tag:blogger.com,1999:blog-33184132455169138892024-03-12T16:08:10.988-07:00The Most Common Syndrome You've Never Heard OfAnonymoushttp://www.blogger.com/profile/03598548849284595605noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-3318413245516913889.post-92004801720886837742015-03-27T13:41:00.000-07:002015-03-27T13:45:43.768-07:00Twins--and Then Colton by Amanda Brown<div class="separator" style="clear: both; text-align: center;">
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We were done. We had 18 month
old twins and we had been assured that we would never conceive on our own. We
were okay with that. We had made the decision to "chance it." We understood that
it was highly unlikely that it would ever happen but we wanted to just let God
make that decision for us. I took my last pill on 10/31. I took a pregnancy test
on 12/11 and found out that our fighter was on the way. What a welcomed
surprise!</div>
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We had no intention of finding
out if the baby was a boy or a girl. We wanted to wait and find out when he/she
arrived. But just like before, this was going to be done how Colton wanted it to
be done. At my 18 week ultrasound, as she put the probe on my growing belly
there it was....his boy parts displayed for all in the room to see. She knew
that we didn't want to know, however this was all little man's doing. It was also
at this ultrasound that we found out that he had a thickened <a href="http://en.wikipedia.org/wiki/Nuchal_scan" target="_blank">neuchal fold</a>. She
told us that more than likely he would have Down Syndrome, or a sever heart
defect. I didn't believe her. We had the amniocentesis only to find out
that it was not Downs. They did a fetal echo and told me it was normal, and fluid on one his kidneys but it was within normal by
the recheck. At 32 weeks I was told there was nothing wrong with the baby and
was sent out to enjoy the rest of my pregnancy. </div>
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<a href="http://4.bp.blogspot.com/-H9F1bKg2-kI/VRXAHRz2HdI/AAAAAAAAATc/58061kg5Yx4/s1600/colton%2Btongue.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://4.bp.blogspot.com/-H9F1bKg2-kI/VRXAHRz2HdI/AAAAAAAAATc/58061kg5Yx4/s1600/colton%2Btongue.jpg" height="200" width="172" /></a>I am a critical care nurse, so I
like to think that I have it together about the human body. But when this guy
was born I was oblivious to the problems. The day after he was born the
pediatrician noticed he had low set ears, a wide nasal fold, wide nipples,one <a href="http://www.mayoclinic.org/diseases-conditions/undescended-testicle/basics/definition/con-20037877" target="_blank">undescended testical</a>, and a
heart murmur. She told me she thought he had this genetic disorder called
Noonans Syndrome. </div>
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I thought the pediatrician was crazy. I've been a nurse for 10 years and
have never heard of that, and besides my baby didn't have all those things she
saw....did he? </div>
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Fast forward 4 months and a failure to thrive diagnosis. What does that mean anyway? He eats fine,
sleeps fine, etc. Once again they must be crazy. I told them they could do their
little genetic testing but we also need to get back to the basics. Maybe he was
just allergic to milk. Testing revealed he was. I cut all dairy out of my diet,
and still he didn't grow. Hmmm maybe they were on to something after all, and its
just me that couldn't see it? Eight weeks later genetic testing confirmed PTPN11. Finally a reason for all the "issues"-- we can move forward and fix them. </div>
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<a href="http://4.bp.blogspot.com/-l0UJ_USTA_8/VRW-8RiYZjI/AAAAAAAAASw/j7UiufALooM/s1600/stpattys%2BBrown.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://4.bp.blogspot.com/-l0UJ_USTA_8/VRW-8RiYZjI/AAAAAAAAASw/j7UiufALooM/s1600/stpattys%2BBrown.jpg" height="200" width="200" /></a>He had <a href="http://en.wikipedia.org/wiki/Myeloproliferative_neoplasm" target="_blank">myeloproliferative</a>
disease that resolved at 11 months. The fluid on his kidney that resolved at
birth. He never ate a lot but we were able to skate around a feeding tube
somehow. (I think he went an entire year only eating green greek yogurt,
chocolate donuts and whole chocolate milk! <b>B</b>ut hey calories are calories right?) He had a 6mm<a href="http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/AboutCongenitalHeartDefects/Ventricular-Septal-Defect-VSD_UCM_307041_Article.jsp" target="_blank"> VSD</a> at birth that resolved, a 8mm <a href="http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/AboutCongenitalHeartDefects/Atrial-Septal-Defect-ASD_UCM_307021_Article.jsp" target="_blank">ASD</a> that had closed to a 3mm <a href="http://my.clevelandclinic.org/services/heart/disorders/congenital/pfo" target="_blank">PFO</a>.
However last Cardiology check said it was now two ASD's with one being 8.9mm and
one at 6.8mm, so we will have to fix that eventually. His pulmonary valve is
just now <a href="http://www.heart.org/HEARTORG/Conditions/More/HeartValveProblemsandDisease/Problem-Heart-Valve-Stenosis_UCM_450369_Article.jsp" target="_blank">stenotic</a>, so they will fix that at the same time. (He needs to be 50lbs, which he may
never hit).</div>
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We started on <a href="http://en.wikipedia.org/wiki/Growth_hormone_treatment" target="_blank">GHT</a> at 18 months
old. I have never regretted this decision. My theory is that when it comes to
growth there are no take backs. You can't take back the years of delayed growth,
and I didn't want him coming to me at 14 years old asking me why I didn't start
sooner. However, in the same instance, if he comes to me at 14 and decides to stop
then that is his decision, and Ill be ok with that. </div>
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He is our 'funny guy"! He keeps
us on our toes, and is the jokester of our family. He really is the perfect
addition to our duo. While I would not change anything about him, I am glad he
was our little "surprise" in every way. I can honestly say I never expected
this.......</div>
Anonymoushttp://www.blogger.com/profile/03598548849284595605noreply@blogger.com3tag:blogger.com,1999:blog-3318413245516913889.post-65049044992758585202015-01-02T12:52:00.000-08:002015-01-02T13:20:40.731-08:00Landen, The Lion Heart<div style="background-color: white; box-sizing: border-box; color: #333333; font-family: 'Noto Serif', Georgia, 'Times New Roman', Times, serif; font-size: 20px; line-height: 1.7; margin-bottom: 1.6em; padding: 0px;">
<span style="line-height: 1.7;">On December 15th, 2014 Tammy Bowers' innovation was highlighted on <a href="http://beehivestartups.com/blog/jw-capital-funds-lion/" target="_blank">Beehive Startups</a> web page. The following is a summary of that interview.</span></div>
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<a href="http://4.bp.blogspot.com/-GIX43hQWQV8/VKcIfBhdv7I/AAAAAAAAAQE/RXs-V0_BqyY/s1600/TammyPIic1.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-GIX43hQWQV8/VKcIfBhdv7I/AAAAAAAAAQE/RXs-V0_BqyY/s1600/TammyPIic1.jpeg" height="320" width="275" /></a><span style="line-height: 1.7;">Just after Landen was born, his father, Joe Bowers, raced to the hospital gift shop, quickly purchased a stuffed lion, and hurried back to the delivery room to place it on the side of his newborn son’s bed. Time was precious. Every second mattered.</span></div>
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Landen was born with LEOPARD syndrome, a RASopathy — a rare genetic disorder with significant cardiac abnormalities, severe hypertrophic cardiomyopathy being the most common. Landen’s doctors didn’t give him much of a chance.</div>
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<span style="background-color: white; color: #333333; font-family: 'Noto Serif', Georgia, 'Times New Roman', Times, serif; font-size: 20px; line-height: 1.7;">When we were taking him home from the NICU after nine weeks of being there, the cardiologist said, "I just want you to know that he’s not going to make it to his first birthday." Tammy </span><span style="background-color: white; color: #333333; font-family: 'Noto Serif', Georgia, 'Times New Roman', Times, serif; font-size: 20px; line-height: 1.7;">didn't want to take him home only to wake up one morning to find him dead. </span><span style="background-color: white; color: #333333; font-family: 'Noto Serif', Georgia, 'Times New Roman', Times, serif; font-size: 20px; line-height: 1.7;">The cardiologist responded by saying, “Well, there’s nothing that anyone’s going to be able to do. It’s going to be quick.” Tammy and her husband were given two choices: </span><span style="background-color: white; color: #333333; font-family: 'Noto Serif', Georgia, 'Times New Roman', Times, serif; font-size: 20px; line-height: 1.7;">enjoy what little time we had left, or hope for a heart </span><span style="background-color: white; color: #333333; font-family: 'Noto Serif', Georgia, 'Times New Roman', Times, serif; font-size: 20px; line-height: 1.7;">transplant.</span><br />
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Tammy Bowers is a believer, even when when hopelessness abounds.</div>
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Tammy Bowers believes in long shots.</div>
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<span style="background-color: white; color: #333333; font-family: 'Noto Serif', Georgia, 'Times New Roman', Times, serif; font-size: 20px; line-height: 1.7;">Landen stayed in the hospital for four weeks while his parents stayed by his bedside, praying for a miracle. As he approached his fourth weekend in the NICU, Landen’s doctors said, come Monday, it was time for the Bowers to go home.</span><br />
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That weekend, in Iowa, a little girl’s heart stopped beating. Although baby Claire passed away, doctors rushed to resuscitate her heart, hoping to use it to save another child’s life.</div>
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A heart that has stopped beating and needs to be resuscitated is considered to be “high-risk” for heart transplants. 17 families turned down Claire’s tiny Iowa heart before it finally made its way to Landen Bowers — just a day before he was supposed to go home.</div>
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<a href="http://4.bp.blogspot.com/-Im1dOtisWHA/VKcKpR2IGeI/AAAAAAAAARA/7lOpoT720f4/s1600/TammyPic4.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://4.bp.blogspot.com/-Im1dOtisWHA/VKcKpR2IGeI/AAAAAAAAARA/7lOpoT720f4/s1600/TammyPic4.jpg" height="240" width="320" /></a>“It ended up being the most absolute perfect heart for him,” said Tammy.</div>
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When the heart first arrived, Claire’s family sent along a gift for Landen--<span style="line-height: 1.7;">a stuffed lamb that had been in her bed. It matched Landen’s lion perfectly. They also received pictures of her holding that lamb. It was just such beautiful symbolism.</span></div>
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<span style="background-color: white; color: #333333; font-family: 'Noto Serif', Georgia, 'Times New Roman', Times, serif; font-size: 20px; line-height: 1.7;">Before Landen was born, Tammy went to college and earned a degree in early childhood development. Starting a company was never part of the plan, </span><span style="background-color: white; color: #333333; font-family: 'Noto Serif', Georgia, 'Times New Roman', Times, serif; font-size: 20px; line-height: 1.7;">but she feels like this is what she should be doing.</span><br />
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<a href="http://1.bp.blogspot.com/-zQGpCa6EnnY/VKcKpodNPlI/AAAAAAAAAQ8/Xvh5JIoSc4M/s1600/TammyPic5.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://1.bp.blogspot.com/-zQGpCa6EnnY/VKcKpodNPlI/AAAAAAAAAQ8/Xvh5JIoSc4M/s1600/TammyPic5.jpg" height="293" width="320" /></a>As soon as her life began to revolve around regular hospital visits and consultations, Tammy was thinking of ways she could help empower caregivers like herself.</div>
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“A huge part of the medical industry is placed on the caregivers,” said Tammy. “Everything that doctors rely upon is what we give them.”</div>
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LionHeart was created by Tammy to provide the right tools and the right information to help caregivers take charge of their medical information, and to ensure doctors receive accurate information in order to make a proper diagnosis.</div>
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You can find Landen at <a href="http://provo.sites.1millioncups.com/" style="-webkit-transition: all 0.2s ease; background: transparent; box-sizing: border-box; color: #333333; font-style: inherit; font-weight: inherit; line-height: 1.7; margin: 0px 0px 1.6em; padding: 0px; transition: all 0.2s ease;" target="_blank">1 Million Cups Provo</a> most weeks; right next to his mom — full of energy, full of life. You wouldn’t know it from spending time with him, but Landen’s battle for survival continues to this day.</div>
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“Heart transplants don’t last forever,” said Tammy. “They say a new heart will only last anywhere from five to 15 years. Transplants are just the start. It’s a trade. You’re trading one disease for the other.</div>
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“Every day we have with our son is a borrowed day. Statistically we have a 50/50 chance of him celebrating his 10th birthday.”<br />
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LionHeart is more than just a startup to Tammy. It’s a rallying cry in a battle she refuses to lose.</div>
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“I am going to fight, and do everything I possibly can to have one more day with my son,” said Tammy. “To have a tool that can help with that is really important.”</div>
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Anonymoushttp://www.blogger.com/profile/03598548849284595605noreply@blogger.com0tag:blogger.com,1999:blog-3318413245516913889.post-80049506355726943892015-01-01T16:14:00.000-08:002015-01-01T16:35:19.826-08:00Looking Back...<div style="background-color: white; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19.3199996948242px; margin-bottom: 6px;">
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Anonymoushttp://www.blogger.com/profile/03598548849284595605noreply@blogger.com0tag:blogger.com,1999:blog-3318413245516913889.post-31394851333323469352014-11-02T14:32:00.001-08:002014-11-02T16:00:58.481-08:00My Son George-Sarah Eastaugh<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">Hi,
my name is Sarah and I am from Essex, England. My sons name is George. He was
born 3<sup>rd</sup> September 2013.<o:p></o:p></span></span></div>
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">The
pregnancy was uncomplicated, though I did find out at 34 weeks I had
gestational diabetes.<o:p></o:p></span></span></div>
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
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<a href="http://4.bp.blogspot.com/-WBpSxTUaWB4/VFavyM7WAPI/AAAAAAAAANs/xb4i_RRrxyo/s1600/10581136_10154812683525440_1267087207_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-WBpSxTUaWB4/VFavyM7WAPI/AAAAAAAAANs/xb4i_RRrxyo/s1600/10581136_10154812683525440_1267087207_n.jpg" height="200" width="150" /></a><span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">George
was born at 36 weeks, a healthy weight of 6lb 4oz’s, but he showed signs of
distress right from the beginning. Immediately
after birth George was taken to the NICU. Further tests indicated he was having
Apnoea’s and desaturations. Treatment
for those uncovered a heart murmur, and later Supravalvular Pulmonary Stenosis.
In total George was in the NICU for 11
days. <o:p></o:p></span></span></div>
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">Our
time in NICU was hard. George is my first child--it wasn’t the start of
parenthood that I had expected.<o:p></o:p></span></span></div>
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">George’s
time in the NICU was a tremendous struggle. For starters the first week we were both in
hospital for an infection, and I was on complete bed rest due to blood loss and
low blood pressure. During that time I would spend the whole day sitting by his
incubator just crying. My husband had to be strong for the both of us as this
tore me apart. I would check his chart over and over for any change or setbacks
and would feel like I had been punched if I saw the dreaded mark. At the end of the week I was able to go home,
which I had mixed emotions about. I knew I would eventually have to leave
without him so wanted to be able to start that routine, but then of course I
didn’t want to leave my son.</span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><a href="http://1.bp.blogspot.com/-TDkkRSCVOow/VFavziIG5gI/AAAAAAAAAOU/s5wXXiPk5XI/s1600/10744932_10154812683505440_674834626_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://1.bp.blogspot.com/-TDkkRSCVOow/VFavziIG5gI/AAAAAAAAAOU/s5wXXiPk5XI/s1600/10744932_10154812683505440_674834626_n.jpg" height="200" width="150" /></a></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><o:p></o:p></span><br />
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">I
spent 2 nights at home without him. After that he was put on a 24 hour breast
feeding trial, which was a success. I
was then able to take my boy home. My family was complete.<o:p></o:p></span></span></div>
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<span lang="EN-GB"><span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 115%;">Being
at home with my son was amazing. Like many new-borns he slept a lot, and </span><span style="line-height: 18.3999996185303px;">wasn't</span><span style="line-height: 115%;"> too fussed on milk. Little and often was just
enough for him. And then when we moved onto bottles it was the same.<o:p></o:p></span></span></span></div>
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">When
George was 3 months old we had an appointment with the paediatrician. The
appointment was straight forward. He was
happy with his progress, but the heart murmur was still there. This is when we
were referred to the cardiologist. At this point we didn’t think anything of
it.<o:p></o:p></span></span></div>
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><span lang="EN-GB" style="line-height: 115%;">When
George was 4/5 months old we went to see the cardiologist. When the tests were completed
and the results in the doctor dropped the bombshell – “‘your son has
Supravalvur pulmonary stenosis and clearly has Noonan’s Syndrome”. </span><span style="line-height: 115%;">My
heart sank.......</span><span style="line-height: 115%;">I
didn’t know anything about this, and of course when I left I got straight onto Google,
and then cried all the way home. My heart felt like it had been broken. My poor
son. Why us? Why him?</span></span></div>
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<a href="http://2.bp.blogspot.com/-8GzQF_2Z8xY/VFavyTUXSII/AAAAAAAAAOw/vsVemB5GZdI/s1600/10656121_10154812683540440_966174321_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-8GzQF_2Z8xY/VFavyTUXSII/AAAAAAAAAOw/vsVemB5GZdI/s1600/10656121_10154812683540440_966174321_n.jpg" height="150" width="200" /></a></div>
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">We
knew we were being referred to see a geneticist but I knew I had to do some
research first, hoping to prepare myself beforehand.<o:p></o:p></span></span></div>
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">I
cried everyday for weeks. I felt liken my whole life had been taken away from
me, and that my son already had a rough start in life. Why did he need another obstacle?
It just wasn’t fair.<o:p></o:p></span></span></div>
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<span lang="EN-GB"><span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 115%;">Our
first geneticist appointment was at 9
months old. By this time we knew George had a slight developmental delay, but I
truly believed it was because he slept so much. Again I </span><span style="line-height: 18.3999996185303px;">wasn't</span><span style="line-height: 115%;"> prepared.<o:p></o:p></span></span></span></div>
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<a href="http://3.bp.blogspot.com/-LgkdotA6U6o/VFav0aA-lkI/AAAAAAAAAOc/fzBxBE4YVGQ/s1600/10799852_10154812683840440_1542053740_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-LgkdotA6U6o/VFav0aA-lkI/AAAAAAAAAOc/fzBxBE4YVGQ/s1600/10799852_10154812683840440_1542053740_n.jpg" height="200" width="150" /></a></div>
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">The
Geneticist said she could see features of NS with George. His eyes, his ears,
and then the slight delay. Bloods were taken and we were told that he was being
tested for PTPN11, and the results would take 3 months.<o:p></o:p></span></span></div>
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">In
this time we had been referred to a group called, “ Portage”. They come to our house once a week for developmental play. George loves it! And he really has come a long way from when he
first started.<o:p></o:p></span></span></div>
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">George
has many friends the same age and younger whom he loves seeing, but I really
struggle seeing them all together because it just highlights how delayed my son
is, and then I have mixed emotions: jealousy, anger, and joy. I can honestly
say that I am jealous of others, angry that it’s my son who has these issues,
but then happy when I see how far my son has come. I speak to my friends when I
have a bad day but sometimes I find the responses upsetting. I am told, “he’s
fine, he’s perfect”, “he’s doing so well”, and “you need to just accept it”.
But unless you are going through it yourself you don’t ever truly understand. I
felt like I had lost the little boy that I was expecting, and then had to plan
a life for the boy I had.</span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><a href="http://1.bp.blogspot.com/-YrZv7956mzc/VFavzrrIpwI/AAAAAAAAAOQ/ZYL4IpA9Wms/s1600/10745119_10154812683660440_181690197_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://1.bp.blogspot.com/-YrZv7956mzc/VFavzrrIpwI/AAAAAAAAAOQ/ZYL4IpA9Wms/s1600/10745119_10154812683660440_181690197_n.jpg" height="200" width="150" /></a></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><o:p></o:p></span><br />
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">We
are still playing the genetics waiting game as the results for PTPN11 came back
negative. His bloods have been re- sent
for another panel of testing that will take until the end of the year. We are
anxious for answers so we can do some future planning for him. We know that
eventually he will need open heart surgery, but that is something I plan to
push to the back of my mind until the appropriate time.<o:p></o:p></span></span></div>
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
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<span lang="EN-GB"><span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 115%;">I still
have days when I cry. George has just started physio. They come once a month
and we have seen them twice. Although he is doing really well, I always cry
after the session. My brain just ticks over and I think “he shouldn’t be
having this" or "he </span><span style="line-height: 18.3999996185303px;">shouldn't</span><span style="line-height: 115%;"> need this”, but then it’s like a flick and I think “but
this is going to help him, this is going to get him to where he needs to be”.<o:p></o:p></span></span></span></div>
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">At
14 months George is a healthy eater-- loves his food, he bum shuffles, commando
crawls and is happy cruising around the sofas. His favourite word (only word)
is dada, and he is my happy, beautiful boy who is my world– I just love him.<o:p></o:p></span></span></div>
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<a href="http://4.bp.blogspot.com/-X6gjEU00ENo/VFavzNvtvnI/AAAAAAAAAOg/5fgXzsAHRco/s1600/10744755_10154812683860440_1969597683_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-X6gjEU00ENo/VFavzNvtvnI/AAAAAAAAAOg/5fgXzsAHRco/s1600/10744755_10154812683860440_1969597683_n.jpg" height="150" width="200" /></a></div>
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<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">Having
a child with Noonan’s has opened my eyes to disabilities, and not just what the
child has to go through, but also the parents. It is a really lonely place. We
have friends and family but being able to speak to those in the same boat is
priceless, and for that I will be forever grateful.<o:p></o:p></span></span></div>
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Anonymoushttp://www.blogger.com/profile/03598548849284595605noreply@blogger.com3tag:blogger.com,1999:blog-3318413245516913889.post-25366116954241741802014-10-08T14:19:00.000-07:002014-10-30T17:30:30.787-07:00If Only For a Moment--Heather Cole<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-ej9tmdtKemg/VDWne4P2CrI/AAAAAAAAAM8/6pdVTQ5fKYo/s1600/CRACKERS%2B10-8-2014%2B5-06-12%2BPM%2B768x1024.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-ej9tmdtKemg/VDWne4P2CrI/AAAAAAAAAM8/6pdVTQ5fKYo/s1600/CRACKERS%2B10-8-2014%2B5-06-12%2BPM%2B768x1024.JPG" height="200" width="150" /></a></div>
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<span style="font-size: 12.0pt; line-height: 115%;">The first
time I peered into the cloudy glass window, through safety bars and clumps of
advertising stickers, I froze. The
American bounty of familiar food filled the shelves—Jif peanut butter, snickers
candy bars, ruffled potato chips, Keebler
crackers and the like. I mentally
tasted each and every one. True, thanks
to an import business that sprang to life sometime within the seventeen years I
had been away from Kenya, obtaining foods similar to those types of American items
was now possible. Even so, the current plethora
of food products weren’t from home. They
weren’t the familiar, comforting tastes I knew so well. And to make matters worse, the store I was
salivating over was ONLY for American government employees (VAT free), not run
of the mill missionaries from America.
All those delightful, pretty boxes and crinkly packages were off limits
to me, no matter what. And every time I
walked by that store my heart… pulled…hard.
We had been living in a rural
area for many months, not to mention sleeping in a spider infested back room of
another missionary’s home, subject to someone else’s preferences in food. Imagining me sinking my teeth into a good ol’
Snickers bar sounded absolutely blissful.<o:p></o:p></span></div>
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<span style="font-size: 12.0pt; line-height: 115%;">It has been
three years since the birth of my son with NS.
As with so many other families the entire first year, and well into the
end of the second year, was wrought with extreme sleep deprivation, high
anxiety levels, endless hospitalizations, procedures, doctors and emergency
visits. Putting it lightly, there wasn’t
a day gone by that didn’t bring something new-- usually unwelcome. My world spun around a little boy and all his
needs, barely making room for two big sisters and a dad always waiting in the wings
for any crumb of attention they could sop up.
And spreading all the love around never really felt possible. In truth Rhyse did get 90% of the attention
in those two years, and I can only hope that I haven’t permanently wounded any
little psyches because of it. A ‘normal’
day couldn’t even be contrived. But I am
so thankful for the word, “grace.” If it
weren’t for grace from all family members to allow me to throw my attentions
where it was demanded most, everyday life would have been a whole lot harder.<o:p></o:p></span></div>
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<span style="font-size: 12.0pt; line-height: 115%;">As I lay in
bed last night thinking about the past three years, beginning October 17<sup>th</sup>,
2011, I saw a picture of myself in front of that ex-pat store. And I realized how much that symbolized where
we are today, and where we will always be.
<o:p></o:p></span></div>
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<a href="http://2.bp.blogspot.com/-Sn_Y7meeOJk/VDWoHKVrqYI/AAAAAAAAANE/rfiBUjLI-4Y/s1600/LeahTri.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://2.bp.blogspot.com/-Sn_Y7meeOJk/VDWoHKVrqYI/AAAAAAAAANE/rfiBUjLI-4Y/s1600/LeahTri.jpg" height="200" width="165" /></a><span style="font-size: 12.0pt; line-height: 115%;">As parents
we don’t see our children as labels, but on paper labels do exist: Leah, the
adopted daughter, Leah the moderately cognitively impaired daughter, and Rhyse
the son with Noonan Syndrome. And these labels, even though they aren’t worn
around like name-brand symbols on t-shirts and tennis shoes, they do change the
dynamics within a family. And I can say
for me that so much like those can’t have --don’t even think about it—you have no right
to them American foods I salivated over every single time, living life as if
there were no cognitive impairments, or medical complexities and surprises just
doesn’t exist: it isn’t attainable. And
every once in a while I do peer into a world where I don’t have to worry about
my daughter’s sustainable future, nor live on the edge of a medical crises, or
learn of yet another diagnosis, or be sent to another specialist: that world is
out of reach. So I stand and squish my face up against an invisible, dirty
window at a more ‘typical’ family—if just for a brief moment. And then I walk away knowing my life is full,
no matter what. I'm happy to say my heart is NOT tormented. And though I would truly make the CI diagnosis and NS diagnosis
go away if I could, I don’t for a second lament their labels. It's totally normal to "check out the other side of the fence" occasionally, and it's OK! And like any other parent in the world, I wish all
three of my children safety in school, protection from bullies, success in
whatever their hearts desire both now and in their futures, and fulfillment from the inside out!<o:p></o:p></span></div>
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<span style="line-height: 18.3999996185303px;">Heather and Jon are parents to Leah (11), Maggey(8) and Rhyse(3), residing in Allendale, Michigan. Heather is a stay at home mom who enjoys blogging when she has a spare moment at <a href="http://www.lifejourneys.us/" target="_blank">Life Journeys and Such</a>. Jon works for a local manufacturing company. </span><br />
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Anonymoushttp://www.blogger.com/profile/03598548849284595605noreply@blogger.com0tag:blogger.com,1999:blog-3318413245516913889.post-20450568113284064472014-05-31T20:50:00.001-07:002014-08-10T12:16:57.233-07:00To Compare is to Devalue--Heather Cole and Harmony Harkema (SILs)<div class="MsoNormal">
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-3zLF9bk2fiI/U4qd1HSx6MI/AAAAAAAAALk/n88Cb19QS5Q/s1600/sils+5-11-2014+11-49-041.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-3zLF9bk2fiI/U4qd1HSx6MI/AAAAAAAAALk/n88Cb19QS5Q/s1600/sils+5-11-2014+11-49-041.JPG" height="211" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Heather and Harmony and Lili</span></td></tr>
</tbody></table>
<h2>
<b>Harmony's Voice:</b></h2>
<div>
<b><br /></b></div>
</div>
<div class="MsoNormal">
<h1>
The Perfect Family<o:p></o:p></h1>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
“I’m pregnant.”<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
The words came
without warning. She simply dropped them into a lull in the conversation as
though she were making an everyday observation. She might have said it was
supposed to rain the next morning. Her tone was light and perfectly calm, her
expression serious.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
I was stirring
something in a pot on the stove, and I turned abruptly, my wooden spoon leaving
a trail of liquid across the kitchen tile. I looked at my sister-in-law
intently, searching for a hint of humor beneath the surface, a sign she was
messing with us. <o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
There was none.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
“You’re . . .
joking?” I asked, falteringly.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
She shook her
head.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
Heather’s
pregnancy came as a shock. She had thought her family was complete. But God –
he was on another page. He had something special in mind for Heather, Jon, and
their two girls. Or rather, he had <i>them</i>
in mind for someone else.<o:p></o:p></div>
<div align="center" class="MsoNormal" style="line-height: 200%; text-align: center; text-indent: .5in;">
###<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
Seven months
later, after months of morning sickness, a challenging bout with gestational
diabetes, and burgeoning worries when third trimester ultrasounds showed that
Heather’s placenta was calcifying, Rhyse Addyson Cole entered the world. He
came quickly, both during labor and at the end of it, his father catching him
like a football as he exited the birth canal in a rush of life-giving fluid.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
We went to the
hospital the afternoon of his birth, the entire extended family crowding into
Heather’s postpartum room, passing the newest member around like a shared
treat. He was the tiniest baby I’d ever held, a mere five pounds four ounces,
with swirls of surprising red hair that led Heather to joke that maybe he was
really the mailman’s son. Jon smile was the widest we’d ever seen it.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
Rhyse charmed us
all that first afternoon, his tiny, perfect face relaxed and calm, his eyes
seeming to take the measure of each of us like a wise old soul. Both Eli and I
snuggled him close and smiled at Heather’s hints to us that Rhyse needed a
cousin close to his age. We had no idea that we were already pregnant. We drove
home from the hospital feeling nothing more than a deep thankfulness that this
longed-for and deeply loved little boy had safely arrived.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
My phone rang just
before 5 a.m. the next morning, pulling us from deep slumber. When I saw Jon’s
name on the caller ID, I came fully awake with a jolt. Even before I answered,
I knew there could be only one reason for Jon to call so early. <i>Something had to be wrong with Heather or
the baby.</i><o:p></o:p><br />
<i><br /></i></div>
<div class="MsoBodyTextIndent">
The days and weeks that followed were filled with
mystery as the doctors searched for an explanation for Rhyse’s unique medical
state. A fearsome low blood platelet count spurred the hospital OB to rush
Rhyse via ambulance to the nearest children’s hospital. Finally, after six
weeks in the NICU that involved countless tests, numerous platelet
transfusions, and all kinds of other medical intercessions no infant should
have to endure, Heather and Jon received a tentative diagnosis, one that would
require further testing before it could be made formal. Rhyse had Noonan
Syndrome.<o:p></o:p></div>
<div class="MsoBodyTextIndent">
<br /></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
<i>Noonan Syndrome.</i> None of us had ever
heard of it. Heather and Jon had to educate themselves out of necessity, and
they did their best to educate the rest of us in turn. In the end, all we could
really be sure of was that nothing was certain. Noonans looks different on
every child, and we had no idea how it was going to look on Rhyse.<o:p></o:p></div>
<div align="center" class="MsoNormal" style="line-height: 200%; text-align: center; text-indent: .5in;">
###<o:p></o:p></div>
<div class="MsoBodyTextIndent">
It’s been over two years since Rhyse was diagnosed
with Noonans, and it’s safe to say he’s become the light of our collective
family life. He has proven himself hardier than any toughened adult, undergoing
constant assessment and treatment for everything from feeding issues to
breathing problems. He has a team of twelve specialists who are regularly
reassessing his needs. He has a G-tube. He gets twice daily steroid shots to
help him grow and will continue to do so until he’s 18 years old. He gets
nightly breathing treatments and will soon have both his tonsils and adenoids
removed in order to improve his ability to breathe while he’s lying down. But
these medical pieces, while they are a big part of Rhyse’s life, do not define
him. Far from it.<o:p></o:p><br />
<br /></div>
<div class="MsoBodyTextIndent">
What <i>does</i>
define him? The same things that define any two-year-old. Bottomless curiosity.
The desire to make his own place of significance within his family and his
world. That unmistakable toddler mix of courage and timidity. The hunger to be
heard, understood, respected, and valued.<o:p></o:p></div>
<div class="MsoBodyTextIndent">
<br /></div>
<div class="MsoBodyTextIndent">
When we think of Rhyse, we don’t think of Noonan Syndrome.
We think of our spunky red-headed nephew with the unshakable sense of humor.
The one who loves and fights with his older sisters like any little brother.
The one who loves to tease his daddy. The one who, in spite of delayed verbal
development, communicates his needs, wants, and feelings as clearly as can be.
The one who loves cars and trucks as though it’s in his DNA. The one who is
bright and intuitive and can read the atmosphere in a room as well as any
psychologist. The one who wants, just like any other child, to be loved and
snuggled and teased and talked to.<o:p></o:p></div>
<div class="MsoBodyTextIndent">
<br /></div>
<div class="MsoBodyTextIndent">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-1OgHB5sz4c4/U4qgmtfJngI/AAAAAAAAAL0/_cXtcCvbklI/s1600/DSCN6563.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-1OgHB5sz4c4/U4qgmtfJngI/AAAAAAAAAL0/_cXtcCvbklI/s1600/DSCN6563.JPG" height="150" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rhyse and Lili</td></tr>
</tbody></table>
We live halfway across the country now, and most of
our time together consists of sending each other videos or making time to
Skype. When we do, we don’t see a sick child, or a struggling child, or an
abnormal child. We see a happy, active little boy yelling and running and
playing and just having a ball being <i>alive</i>.
He and our daughter, Lili, who is nine months younger, wave to each other
gleefully across the miles, always excited to see each other, even if it’s only
via a computer screen. Indeed, Lili’s favorite “TV show” is Rhyse’s YouTube
channel.<o:p></o:p></div>
<div class="MsoBodyTextIndent">
<br /></div>
<div class="MsoBodyTextIndent">
And his parents? His sisters? No one, <i>no one</i>, could love Rhyse, could care for
him, the way they do. Even at the end of a week wherein there have been gas
bubbles in the G-tube and episodes of throwing up formula all over the minivan,
hours spent in a specialist’s office that end in yet another tweak to the care
plan, and midnight visits to the emergency room - even when it feels like
there’s nothing more that could possibly go wrong, none of it can cancel out
the love shared between the five of them.<o:p></o:p></div>
<div class="MsoBodyTextIndent">
<br /></div>
<div class="MsoBodyTextIndent">
Noonans doesn’t stop them from being a family who
goes to the library and the bookstore and the zoo and the beach. A family with
a swimming pool and a trampoline in the backyard. A family who goes on hikes
and bikes rides and trips to the ice cream shop down the street. <o:p></o:p></div>
<div class="MsoBodyTextIndent">
<br /></div>
<div class="MsoBodyTextIndent">
It’s still not clear what Noonans will mean for
Rhyse long term, what he’ll be able to do or be as an adult. What <i>is</i> clear, however, is that Rhyse is
exactly where God meant for him to be – cradled in the bosom of a family that,
while as imperfect as every other family, is <i>perfect for him</i>.<o:p></o:p></div>
<div class="MsoBodyTextIndent">
<span style="color: red;"><br /></span></div>
<div class="MsoBodyTextIndent">
<b><span style="color: red;">Harmony Harkema is the proud aunt of Rhyse Addyson
Cole, a spunky little boy who just happens to have Noonan Syndrome. She is also
the proud mother of Rhyse’s favorite cousin, Lili. Harmony lives in the
Washington, DC area. She blogs at <a href="http://www.beyondtoast.com/">www.beyondtoast.com</a>.</span></b><span style="color: #134f5c;"><o:p></o:p></span></div>
<div class="MsoBodyTextIndent">
<br /></div>
<div class="MsoBodyTextIndent">
*******************************************************************************</div>
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<h2 style="margin-bottom: .0001pt; margin: 0in;">
<b><span style="font-size: large;">Mom's (Heather) Voice:</span></b></h2>
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<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-vdCg5bdrmbA/U4qiQ7p_sbI/AAAAAAAAAMM/S-PTC8rPnPM/s1600/momandrhysescooter+5-29-2014+10-23-49+AM+4320x3240.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-vdCg5bdrmbA/U4qiQ7p_sbI/AAAAAAAAAMM/S-PTC8rPnPM/s1600/momandrhysescooter+5-29-2014+10-23-49+AM+4320x3240.JPG" height="200" width="115" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mom and Rhyse(PTNP11)</td></tr>
</tbody></table>
When I walked into Meijer, a
mid-western mass retailer, I found myself settling my eyes on a little boy who
has a syndrome. He and his dad were walking along the fresh vegetable
aisle holding hands, and sporting smiles spread from ear to ear.
I didn't have my son with me at the time, but as I sauntered by
these words came to my mind, “I know.” I continued on past the
salty snack aisle, the baking aisle, and the ethnic food aisle and onto the
cleaning aisle to grab some toweling. But all the while I desperately wanted to
run back to that daddy and tell him, “I value your son too.” I grabbed some
toweling and made my way back to the front of the store, purposefully gazing
down each aisle momentarily to look for the boy and his dad. I never
found them. I feel I missed an opportunity to remind that dad he’s not
alone.<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<u1:p></u1:p>According to the
Merriam-Webster dictionary the second meaning of compare means “to look at (two
or more things) closely in order to see what is similar or different about them
or in order to decide which one is better.” The second definition of devalue means
“to cause (something or someone) to seem or to be less valuable or important.”<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
All of our lives we compare who we
are to who someone else is or what we may or may not have as compared to a
friend or a stranger —wondering how being like someone else or having what they
have might define us differently. These comparisons seem inherent to our
nature as humans, though for each of us these may be bent in different ways
according to the culture and sub-culture that we live in, as well as our
personal spiritual journeys.<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
Comparisons can push us to greater
success, or greater failure. Comparisons can be inane, or horrifically
self-defeating. If we could live a life without comparing I truly don’t know if
it would be better or worse! <o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
In the beginning of our journey’s
with Noonan Syndrome I believe many of us could only see the blatant
differences in our children. And those differences were painful.
Most mommies were being wheeled out the door of their birthing center with
their little bundle in arms, overwhelmed with the impending sleep deprivation
and life changes that come with having children. But at least that is
“normal.” For many of us NICU instantly became our “normal”. Instead of
exuding joyous emotion over our new arrival, in between yawns of course, we had
to find a new way to handle both joy and pain in the same moments. We had to
learn quickly to allow strange men and women to handle, cuddle, feed and clothe
our newborns. And trust doctors we had never met. We had to learn
to fore go the expectations of a new parent, and learn to return home from the
hospital each day empty handed. It has been two and a half years since my
journey with Noonans began and the wounds that these things left can easily be
torn open from sheer memories alone. I can only look back for a short time, and
then I must move on to savor the present—to value my son for whom he is.
If I don’t value him, as a parent, for both his differences and similarities to
others I don’t know that he will be able to value himself as he becomes more
self-aware.<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
When others compare our
child/children to the mainstream or to other non-typical children we feel
devalued as parents, and it feels like our child/children are being devalued as
well. But if I could gather all of us parents together in one room I
think we could agree that as our love for our child grows deeper, we focus less
and less on their differences. And whether others compare our children to the
mainstream or we ourselves compare our own children to the mainstream it is fruitless,
and it can devalue everyone. As moms and dads of children who do not fit
into the “typical” category, whether the differences are physically obvious or
not, we know that comparison is<span class="apple-converted-space"> </span><i><span style="color: red; font-family: inherit, serif;">less about
differences and more about commitment:</span></i><span class="apple-converted-space"> </span>commitment to love beyond the imperfections of
humanity, and to love and to value in a new and deeper way.<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-8e1W-MqHlfA/U4qlPhEXI7I/AAAAAAAAAMY/Xf020oSTZls/s1600/threeKidsCropped+5-17-2014+5-16-13+PM+2391x2706.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-8e1W-MqHlfA/U4qlPhEXI7I/AAAAAAAAAMY/Xf020oSTZls/s1600/threeKidsCropped+5-17-2014+5-16-13+PM+2391x2706.JPG" height="200" width="176" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Maggey, Rhyse, Leah</td></tr>
</tbody></table>
I wish I could say I was perfect at
commitment instead of comparison myself, or that the words of others comparing
my children just slip off me like water down a slide. But I can’t.
As of mother of an adopted daughter whose inherited skin color is a deep,
lustrous brown I face the challenge of rising emotions when she is compared to
white folk. Just this past week she came racing off the bus upset that she was
called, “dark chocolate” all the way home. My second daughter is white
and “typical” in every way and truly can’t understand why others tease her
sister—they are the best of friends. My son who not only has Noonan Syndrome
but has spectacular, orangey-red hair--for which he gets gawked at by older
ladies, just plain sticks out wherever he goes! <o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br />
While we do not want to be
hypersensitive to the stares or the questions we get from strangers I will be
the first to raise my hand and admit I get tired of the “he’s so small what’s
wrong with him?” question or “your son looks tired is it nap time?” And don't
complain to me that your child won't eat his veggies! At least he eats!
Ok, see? I, too, have to take a big breath and bite my tongue on
occasion. Rarely does anyone really want to know about a syndrome, and when
I use the word, “ptosis” their own eyes glaze over! There are days where I am tired of feeding
Rhyse through a g-tube, being puked on at the most inconvenient times,
changing bed covers three times a night from med port eruptions,
perpetual sleep deprivation and a long list of diagnoses that only continues to
get longer-- I struggle with feelings of incompetence and uselessness as a
person. And in the wee, wee hours of the morning, when I can’t relax long
enough to ooze back to sleep because the sounds of Rhyse’s asthma are keeping
my nerves sharp and edgy, I desperately wish Noonans away like the whole thing
was just a hokey nightmare from too much pizza. I crave “typical.” Eventually
morning does come, and the brain fog lifts, and there it is, Noonans, still
staring back at me in face of a beautiful little boy that I could not love any
less, no matter what. <o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
So I erroneously compare myself with that mother "out
there" who has healthy kids, who keeps a perfectly clean house, and always
gets the dry laundry out of the dryer before wrinkles set in--and I come up so
far from human. Being a mom of a child with a syndrome makes me feel <i>different too.</i> I
guess we all have to keep reminding ourselves not to compare! We compare
and we make assumptions; assumptions that are usually wrong. And for some
darn reason when we compare and assume we aren't thinking in the best
interest of others! <o:p></o:p></div>
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I feel I must interject an important
point here: this is from a mother’s perspective. <i> </i>I am not the one who is labeled “different.” I am not
the one who has to overcome physical and emotional challenges in a world set up
for “typical” people. I grieve EVERY time I read the many accounts
of kids, written by parents of kids with Noonans,
being viciously bullied because of their small stature. I
am moved by the love of a sister when I watch Alexia Grace Hopkins singing,<span style="color: magenta;"><span class="apple-converted-space"> </span><a href="https://www.youtube.com/watch?feature=player_embedded&v=WRKhO9_1gjU" target="_blank"><span style="color: magenta;">"DifferentThan Everyone Else"</span></a></span>, a song she
wrote in honor of her sister who has Noonans. In a bittersweet way I
enjoy reading and rereading<span class="apple-converted-space"> </span><a href="http://teamnoonanblog.blogspot.com/2014/03/lee-robinson-growing-up-with-soldier.html" target="_blank"><span style="background-color: white; color: magenta; font-family: "inherit","serif";">Lee
Robinson’s blog</span></a><span class="apple-converted-space"> </span>regarding
his beloved brother, Connor. The paradox between resenting Connor because
of how his medical issues inherently brought so much attention as a child, and
yet the fierce love of a little brother for his big brother gets me every time.
I see how this could be playing out in my own kids’ lives. And yet there is
nothing I can do to change those dynamics. I can only love equally and
believe someday all my kids will understand.<o:p></o:p></div>
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Each time kids who have NS speak out
I listen and learn.<o:p></o:p></div>
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So as I take a deep breath and
examine my own coined phrase, “to compare is to devalue”, as a mom who has a
child with a syndrome, I challenge myself to always value him well beyond any
reason to compare him to others, and to teach my other two kids that comparing
themselves to others for any reason is futile. And most of all to help
Rhyse "catch" the understanding that being<span class="apple-converted-space"> </span><i>different</i><span class="apple-converted-space"> </span>doesn't make him less. Not to
mention kicking myself in the pants occasionally and reminding myself of the
same thing!<o:p></o:p><br />
<br />
<i>Heather and Jon have three kids, Leah, Maggey and Rhyse(PTNPII). They reside in Allendale, Michigan. Jon works as a Materials Manager for an international company, and Heather is a stay at home mom--who occasionally likes to blog! <a href="http://lifejourneysandsuch.blogspot.com/" target="_blank"><span style="color: red;">Life Journey's</span></a></i><br />
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<span style="font-size: x-small;"><span style="font-family: Cambria, serif;">DISCLAIMER:</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: x-small;"><span style="font-family: Cambria, serif;"><br />The article above was written by a guest blogger. The opinions and ideas written belong solely to the guest blogger. Noonan Syndrome Foundation DOES NOT endorse political candidates and religion or religious preferences.</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: x-small;"><span style="font-family: Cambria, serif;">This blog is provided for moral support purposes only. This blog is not a substitute in any way for medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have learned from this blog.</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
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<span style="font-family: Cambria, serif;"><span style="font-size: x-small;">The Foundation does not recommend or endorse any specific tests, treatments, physicians, products, procedures, opinions or other information that may be mentioned in this blog. Reliance on any information provided by the Foundation, Foundation volunteers, staff or guest blogger/s is solely at your own risk. You should not rely on information you receive from or through the blog for any personal, medical or health decision, but should consult with a qualified professional for specific information suited to your family member’s case.</span></span></div>
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Anonymoushttp://www.blogger.com/profile/03598548849284595605noreply@blogger.com2tag:blogger.com,1999:blog-3318413245516913889.post-89819935977815160652014-03-12T09:04:00.001-07:002014-03-20T11:23:14.918-07:00Lee Robinson--Growing Up with a Soldier<div class="MsoNormal">
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<span style="font-family: "Tahoma","sans-serif"; font-size: 12.0pt; line-height: 115%;">This is a short story on what growing up with a brother
with noonan syndrome is like from my point of view.<o:p></o:p></span></div>
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<span style="font-family: "Tahoma","sans-serif"; font-size: 12.0pt; line-height: 115%;">I am 22 and Connor is 20. As children Connor and I were the
best of friends. I have little recollection of knowing he was different until
primary school. At that time he was
bullied a lot for being different. I was very protective of him, getting into
fights with those that bullied him. <o:p></o:p></span></div>
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<a href="http://3.bp.blogspot.com/--0ExH4h9ImQ/UyCFVcPRCZI/AAAAAAAAAJU/lGUPtx5Ifwg/s1600/pic+1.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/--0ExH4h9ImQ/UyCFVcPRCZI/AAAAAAAAAJU/lGUPtx5Ifwg/s1600/pic+1.png" height="200" width="133" /></a><span style="font-family: "Tahoma","sans-serif"; font-size: 12.0pt; line-height: 115%;">Eventually Connor changed schools because the school he
was at refused to believe my brother was being bullied. Secondary school was
even harder. During that time he became ill a lot, and I was old enough to
understand how sick he was. I found it
heart breaking to support him while struggling with my own mental health
challenges. I could not get a handle on
things as I felt pushed aside. As a teenager I did resent him, even though I
loved him to bits and would fight for him.<o:p></o:p></span></div>
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<span style="font-family: "Tahoma","sans-serif"; font-size: 12.0pt; line-height: 115%;">When I was no longer in school with Connor he was
bullied by both teachers and other students and I was no longer there to
protect him. He did not tell us he was being bullied until he left school
because he was scared of how I would react.<o:p></o:p></span></div>
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<span style="font-family: "Tahoma","sans-serif"; font-size: 12.0pt; line-height: 115%;">Throughout all the crap he was still suffering from
different health issues. But I continued to support him, trying my best to
understand Noonans. He was also my rock when I was diagnosed with schizoaffective
disorder, even though he doesn’t understand it to this day. He tries his best
and for that I can’t thank him enough. </span></div>
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<span style="font-family: "Tahoma","sans-serif"; font-size: 12.0pt; line-height: 115%;">When our mum took ill a few years back he
became withdrawn. I became the main
caregiver for him. That time was hard--I
had to be strong when I just wanted to cry. I still remember his voice telling
me things would be, “ok.” It’s something
I will never forget because I was the big brother but he was the strong one
that day. Through it all we all came out the other side together.<o:p></o:p></span></div>
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<span style="font-family: "Tahoma","sans-serif"; font-size: 12.0pt; line-height: 115%;">Dad left when Connor was born, and was a part time dad
for 8 years until he got remarried and just disappeared. I struggled with him
leaving, and was always very angry with him. Connor has never had a bond with
him so he has never spoken about him even though it must upset him at times.<o:p></o:p></span></div>
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<span style="font-family: "Tahoma","sans-serif"; font-size: 12.0pt; line-height: 115%;">Connor is the strongest person I know and I look at him
like a soldier. Nothing has ever beat him even though he struggles every day
with his health. He still has a smile for me every day and I love him so much .<o:p></o:p></span></div>
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<span style="font-family: "Tahoma","sans-serif"; font-size: 12.0pt; line-height: 115%;">As I was writing this he came and hugged me for no
reason .<o:p></o:p></span></div>
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<span style="font-family: "Tahoma","sans-serif"; font-size: 12.0pt; line-height: 115%;">I am writing this to let everyone know that you come out
the other end the winner and the struggle is worth it just for that beautiful
smile, or once in a blue moon hug. So for anyone with a sibling with Noonans just remember their struggle is so real to
them, and the best thing you can do is just be there with a smile and a hug
when they want it.<o:p></o:p></span></div>
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<span style="font-family: "Tahoma","sans-serif"; font-size: 12.0pt; line-height: 115%;">Writing this was really hard as I am thinking on the bad
times which is something I try not to do but hopefully someone will realize
when they read this that you can get through it .<o:p></o:p></span><br />
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<span style="font-family: "Tahoma","sans-serif"; font-size: 12.0pt; line-height: 115%;">I am proud when I look at Connor now as I know I helped
make him the man he is today, and I could not ask for a better brother as I
love him to bits.<o:p></o:p></span><br />
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<span style="font-size: x-small;"><span style="font-family: Cambria, serif;">DISCLAIMER:</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: x-small;"><span style="font-family: Cambria, serif;"><br />The article above was written by a guest blogger. The opinions and ideas written belong solely to the guest blogger. Noonan Syndrome Foundation DOES NOT endorse political candidates and religion or religious preferences.</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: x-small;"><span style="font-family: Cambria, serif;">This blog is provided for moral support purposes only. This blog is not a substitute in any way for medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have learned from this blog.</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
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<span style="font-family: Cambria, serif;"><span style="font-size: x-small;">The Foundation does not recommend or endorse any specific tests, treatments, physicians, products, procedures, opinions or other information that may be mentioned in this blog. Reliance on any information provided by the Foundation, Foundation volunteers, staff or guest blogger/s is solely at your own risk. You should not rely on information you receive from or through the blog for any personal, medical or health decision, but should consult with a qualified professional for specific information suited to your family member’s case.</span></span></div>
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Anonymoushttp://www.blogger.com/profile/03598548849284595605noreply@blogger.com0tag:blogger.com,1999:blog-3318413245516913889.post-82748766344072197222014-02-01T14:55:00.000-08:002014-03-12T05:50:19.090-07:00Lina Windheim--Overcoming the Odds<div class="separator" style="clear: both; text-align: center;">
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<span style="background: #F7F7F7; color: #3e454c; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">I'm Lina and I come from Malmoe, which is the third capital
of Sweden. I’m 27 years old and I have an amazing family: my parents, Ingrid
and Sune and my two sisters, Boel (34 years old) and Ellen (29 years old). I
have a little niece, Michaela and she was born on the 1st January 2014. </span><span style="font-family: Cambria, serif;"><o:p></o:p></span></div>
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<a href="http://3.bp.blogspot.com/-F67oHIHELCE/UxO2eSzNynI/AAAAAAAAAHU/vXQV27K0r98/s1600/LindaWadenheim01.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-F67oHIHELCE/UxO2eSzNynI/AAAAAAAAAHU/vXQV27K0r98/s1600/LindaWadenheim01.jpg" height="200" width="124" /></a><span style="background: #F7F7F7; color: #3e454c; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">I was born on the 1st October 1986. I was 51 cm(20 in) long
and weighed 3900 grams(8.5 lbs). I had black hair and ice blue eyes. My parents
were overjoyed that they had three beautiful daughters. They thought it would
be fine for me. But when I was two weeks old I no longer wanted to eat. I threw
up everything, and my parents worked hard to make sure I would survive.</span><span style="font-family: Cambria, serif;"><o:p></o:p></span></div>
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<span style="background: #F7F7F7; color: #3e454c; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">When I was a month, the doctors discovered that I had
serious heart defects. I had a large hole between the atria and ventricles. The
doctor didn’t want to operate on my heart because I had really bad blood coagulation,
and they thought the hole would heal itself.</span><span style="font-family: Cambria, serif;"><o:p></o:p></span></div>
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<span style="background: #F7F7F7; color: #3e454c; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">I continued to vomit so my parents reached out for help. I
moved into the hospital and stayed for three months to survive. After three
months, I came home with an ng tube in my nose. The doctors didn't think I
would live to my one-year birthday: but I survived! My parents knew I wanted to
survive, and not leave my family.</span><span style="font-family: Cambria, serif;"><o:p></o:p></span></div>
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<span style="background: #F7F7F7; color: #3e454c; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">My parents found out I was deaf when I was one year old. My
whole family learned Swedish Sign Language. I started to walk when I was 2 ½
years old. But then my parents again discovered I was different than my
sisters.</span><span style="font-family: Cambria, serif;"><o:p></o:p></span></div>
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<span style="background: #F7F7F7; color: #3e454c; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">My parents and I met a specialist and he immediately knew I
had Noonan Syndrome. My doctor sent me to another specialist in Gothenburg
(west coast of Sweden) where there are professionals on rare diseases. Again,
he told my parents I had Noonan Syndrome.</span><span style="font-family: Cambria, serif;"><o:p></o:p></span></div>
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<span style="background: #F7F7F7; color: #3e454c; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">I was officially diagnosed when I was six years old.
Shortly afterward I started growth hormone therapy and responded well. I took
growth hormones for ten years. I stopped taking hormones when I was sixteen
years old.</span><span style="font-family: Cambria, serif;"><o:p></o:p></span></div>
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<span style="background: #F7F7F7; color: #3e454c; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">I will now tell you about my schooling. It was one of the
toughest experiences. I started going to the school for the deaf when I was
seven years old. I already knew that I wasn’t like the other pupils. I struggled
a lot and wanted to have the help of the teachers, but I didn’t get much help
from them. I got a lot of help from my parents. Not all teachers believed in me
but I believed in myself!</span><span style="font-family: Cambria, serif;"><o:p></o:p></span></div>
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<span style="background: #F7F7F7; color: #3e454c; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">One of the worst parts of school was the bullying. The
pupils bullied me when I started at the school for the deaf. The bullying never
stopped, but I was stronger every day. I learned to win my own battles by the
time I was finished with elementary school.</span><span style="font-family: Cambria, serif;"><o:p></o:p></span></div>
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<span style="background: #F7F7F7; color: #3e454c; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">After elementary school, I went to high school for the deaf
and hard of hearing in Orebro (between in Sweden) for four years. There is only
one high school for the deaf and hard of hearing in Sweden, which is in Orebro.
I moved alone to Orebro and my family stayed at home in Malmoe. I lived with
friends. It was hard when I didn’t have my family there. But I was more
powerful than ever! All the teachers believed in me! They helped me a lot and I
had a teacher who became my extra father. He supported me and stood by my side
for four years. I found new friends. It was absolutely the best event I moved
to Orebro!!</span><span style="font-family: Cambria, serif;"><o:p></o:p></span></div>
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<br /></div>
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<span style="background: #F7F7F7; color: #3e454c; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">After four years in high school, I moved back to my beloved
family. I looked for different jobs but I found nothing. I began studying to
nurse in intensive level. It was so tough but I did it! April 2009, I found a
job at retirement home for deaf and deaf-blinds, but it wasn’t a steady job.
After 1 ½ years without a steady job, I started to struggle to get a steady job
at the retirement home. I never gave up, until August 2012, I won my fight for
work and I got a steady job there!</span><span style="font-family: Cambria, serif;"><o:p></o:p></span></div>
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<span style="background: #F7F7F7; color: #3e454c; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"> I now live by myself in my own apartment. I bought my
apartment in the fall of 2011. I love my apartment! I don’t need have help with
anything. I can do it all by myself. I learned when I lived in Orebro. My life
with NS is so tough but it's so amazing anyway! I won many battles and now I’m
very happy! I survived two major surgiers (heart, April 1996 and tooth, January
2004). I feel that I'm a true warrior!I feel I can</span><span style="background: #F7F7F7; color: #3e454c; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Tahoma; mso-hansi-theme-font: major-latin;"> love myself and think that I am a beautiful woman!</span><span style="font-family: Cambria, serif;"><o:p></o:p></span></div>
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<span style="background: #F7F7F7; color: #3e454c; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Tahoma; mso-hansi-theme-font: major-latin;"><br />
Part 2</span><span style="font-family: Cambria, serif;"><o:p></o:p></span></div>
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<a href="http://2.bp.blogspot.com/-IKVKDGhpspI/UvfVdxwGC_I/AAAAAAAAAWg/sMkx8eHKl5E/s1600/lina+pic2.jpg"><span style="color: blue; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Tahoma; mso-hansi-theme-font: major-latin; mso-no-proof: yes; text-decoration: none; text-underline: none;"><v:shapetype coordsize="21600,21600" filled="f" id="_x0000_t75" o:preferrelative="t" o:spt="75" path="m@4@5l@4@11@9@11@9@5xe" stroked="f">
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<v:imagedata o:title="proxy?url=http%3A%2F%2F2.bp.blogspot.com%2F-IKVKDGhpspI%2FUvfVdxwGC_I%2FAAAAAAAAAWg%2FsMkx8eHKl5E%2Fs1600%2Flina%2Bpic2" src="file:///C:\Users\Hethcole\AppData\Local\Temp\msohtmlclip1\01\clip_image001.jpg">
</v:imagedata></v:fill></v:shape></span></a><span style="color: #333333; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Tahoma; mso-hansi-theme-font: major-latin;">After my parents found out I had Noonan syndrome they looked for
an association, but they discovered that there was nothing specific for Noonan
Syndrome in Sweden. We thought we were alone. But it wasn't long before we
found a place called Agrenska in Gothenburg. Agrenska provides programs for
children, youth and adults with disabilities, their families and professionals.
In the Summer of 1996 my mother, my sister and I met other children with Noonan
Syndrome in Agrenska--we realized that we weren't alone! It was an amazing time
for us.<o:p></o:p></span></div>
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<a href="http://4.bp.blogspot.com/-H_t0EIBpyI4/UxO2NHvJZRI/AAAAAAAAAHQ/nRj06VCuWO8/s1600/lina+pic2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://4.bp.blogspot.com/-H_t0EIBpyI4/UxO2NHvJZRI/AAAAAAAAAHQ/nRj06VCuWO8/s1600/lina+pic2.jpg" height="200" width="150" /></a><span style="color: #333333; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Tahoma; mso-hansi-theme-font: major-latin;">After
our experience in Agrenska my mother began to think about how life would be if
there wasn't a Noonan Syndrome association in Sweden. In autumn 1996 she sent
an application to form an association. She found another person who had a
grandchild with NS and together they formed the Noonan Syndrome association of
Sweden, with our first annual Noonan Syndrome conference in 1997!<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Tahoma; mso-hansi-theme-font: major-latin;">My
mother formed the association so we wouldn't feel alone! She is an amazing mom
to have been so thoughtful. She worked very hard to make sure the association
would be a success. In the beginning we didn't have very many members, but
today we have 250 members, including parents and siblings! It is so amazing.<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Tahoma; mso-hansi-theme-font: major-latin;">We
usually have Noonan family conference once a year (summer). It is so important
for me to get to the Noonan family conference to meet with others who have the
same diagnosis! <o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Tahoma; mso-hansi-theme-font: major-latin;">My
mother was on the Noonan’s board until last summer--serving families for
seventeen years. My mom is now with another organization called, "Rare
Diagnoses Sweden." All members in our association say that my mother is
the most important person in our association. She helped them so much. I
remember when I lived at home she would sit and talk on the phone for many
hours, encouraging and supporting other families! She has an absolutely big
heart, and she usually has time to talk about anything I need!<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Tahoma; mso-hansi-theme-font: major-latin;">A
lot of love from Lina<o:p></o:p></span></div>
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<br />
Part 3<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Tahoma; mso-hansi-theme-font: major-latin;">Until
recently I had very low self-confidence. I didn’t feel I could help others who
are struggling with the diagnosis. My psychologist in the school for the deaf
tried to help me but it didn’t work. I worked very hard on my self-confidence.
My parents also helped me very much. When I was in Orebro, one of my friends
realized I needed some help.</span><span style="font-family: Cambria, serif;"><o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Tahoma; mso-hansi-theme-font: major-latin;">In
Obrero I found a very good psychologist whom I connected with—that I really
could talk to about my life with NS. One day my psychologist said to me that I
must have a tool that I could use to help deal with my feelings. I worked so
hard for me to be happy and proud!</span><span style="font-family: Cambria, serif;"><o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Tahoma; mso-hansi-theme-font: major-latin;">At
20 years old my self-confidence became stronger--I love my diagnosis more than
ever and I am very proud of myself! I knew I could start helping other children
and youth, and their parents too. It was an amazing moment when I realized I
could start helping others. I have changed a lot after Orebro. I have continued
to help others. In February 2012 I found out I was nominated for David
Lega's scholarship. </span><span style="font-family: Cambria, serif;"><o:p></o:p></span></div>
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<a href="http://4.bp.blogspot.com/-2e6KnjlndYM/UxO2NPWW5gI/AAAAAAAAAHM/KaCW8Aupn1E/s1600/last+ic.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-2e6KnjlndYM/UxO2NPWW5gI/AAAAAAAAAHM/KaCW8Aupn1E/s1600/last+ic.jpg" height="200" width="171" /></a><a href="http://3.bp.blogspot.com/-oWe_N1NjEU4/UxIT_9zUmkI/AAAAAAAAAXI/zaR9yqlKR3g/s1600/last+ic.jpg"><span style="color: blue; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin; mso-no-proof: yes; text-decoration: none; text-underline: none;"><v:shape alt="https://3.bp.blogspot.com/-oWe_N1NjEU4/UxIT_9zUmkI/AAAAAAAAAXI/zaR9yqlKR3g/s1600/last+ic.jpg" href="http://3.bp.blogspot.com/-oWe_N1NjEU4/UxIT_9zUmkI/AAAAAAAAAXI/zaR9yqlKR3g/s1600/last+ic.jpg" id="Picture_x0020_1" o:button="t" o:spid="_x0000_i1025" style="height: 149.4pt; mso-wrap-style: square; visibility: visible; width: 128.4pt;" type="#_x0000_t75">
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has a rare diagnosis, or siblings or other relatives of a person with a rare
diagnosis, and who by their voluntary commitment appears as an inspiration and
role model". There were ten people in the nomination list. I was the only
one deaf on the list. At first I thought that I would obviously win because I'm
deaf, I moved alone to Orebro, and I fought and never gave up. I have a steady
job at the retirement home for deaf and deaf-blind people where I give them a
greater quality of life! But when I sat in the audience I thought, "no, I have
no chance. They are stronger than me”. But when our Swedish Social Affairs,
Goran Hagglund said my name I was really shocked and thought "No, no, not
me!" My mother said, "Lina, it is you! Get up from your chair!”. Both
my parents burst into tears saying, "Lina, we love you!". I won the
scholarship and 25 000 Swedish crowns too. I gave a nice speech to the audience
about my life with NS, my job and other things. That speech helped me begin my
life as a role model for others! I thanked my family and friends who helped me
so much. I was so grateful!</span><span style="font-family: Cambria, serif;"><o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Tahoma; mso-hansi-theme-font: major-latin;"><br /></span></div>
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<span style="color: #333333; font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Tahoma; mso-hansi-theme-font: major-latin;">After
receiving the scholarship I became more powerful than ever, and I want to
continue helping others with NS, and their parents. I’m passionate about my job
to help others! They need my help. I can’t leave them now. I also want to help
other children, youth and parents from other countries, not only in Sweden.
That's the reason that I’m in the group, "Noonan Syndrome Family" and
I’m always here if you need to talk or have support.</span><span style="font-family: Cambria, serif;"><o:p></o:p></span></div>
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<span style="font-size: x-small;"><span style="font-family: Cambria, serif;">DISCLAIMER:</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
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<span style="font-size: x-small;"><span style="font-family: Cambria, serif;"><br />
The article above was written by a guest blogger. The opinions and ideas
written belong solely to the guest blogger. Noonan Syndrome Foundation DOES NOT
endorse political candidates and religion or religious preferences.</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: x-small;"><span style="font-family: Cambria, serif;">This blog
is provided for moral support purposes only. This blog is not a substitute in
any way for medical advice, diagnosis or treatment. Always seek the advice of
your physician or other qualified health provider with any questions you may
have regarding a medical condition. Never disregard professional medical advice
or delay in seeking it because of something you have learned from this blog.</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
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</div>
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<span style="font-family: Cambria, serif;"><span style="font-size: x-small;">The
Foundation does not recommend or endorse any specific tests, treatments,
physicians, products, procedures, opinions or other information that may be
mentioned in this blog. Reliance on any information provided by the Foundation,
Foundation volunteers, staff or guest blogger/s is solely at your own risk. You
should not rely on information you receive from or through the blog for any personal,
medical or health decision, but should consult with a qualified professional
for specific information suited to your family member’s case.</span></span><span style="font-family: 'Times New Roman', serif; font-size: 13.5pt;"><o:p></o:p></span></div>
<!-- Blogger automated replacement: "https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F2.bp.blogspot.com%2F-IKVKDGhpspI%2FUvfVdxwGC_I%2FAAAAAAAAAWg%2FsMkx8eHKl5E%2Fs1600%2Flina%2Bpic2.jpg&container=blogger&gadget=a&rewriteMime=image%2F*" with "https://2.bp.blogspot.com/-IKVKDGhpspI/UvfVdxwGC_I/AAAAAAAAAWg/sMkx8eHKl5E/s1600/lina+pic2.jpg" --><!-- Blogger automated replacement: "https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F3.bp.blogspot.com%2F-oWe_N1NjEU4%2FUxIT_9zUmkI%2FAAAAAAAAAXI%2FzaR9yqlKR3g%2Fs1600%2Flast%2Bic.jpg&container=blogger&gadget=a&rewriteMime=image%2F*" with "https://3.bp.blogspot.com/-oWe_N1NjEU4/UxIT_9zUmkI/AAAAAAAAAXI/zaR9yqlKR3g/s1600/last+ic.jpg" -->Anonymoushttp://www.blogger.com/profile/03598548849284595605noreply@blogger.com0tag:blogger.com,1999:blog-3318413245516913889.post-83364137670700916262013-08-14T15:02:00.000-07:002014-03-12T05:51:01.922-07:00Sarah Farley--Unravelled<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<i><span style="color: #262626; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">“Are you tired? Worn out? Burned out on religion? Come to me.
Get away with me and you’ll recover your life. I’ll show you how to take a real
rest. Walk with me and work with me—watch how I do it. Learn the unforced
rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep
company with me and you’ll learn to live freely and lightly.” (Matthew 11:28-30
MSG)</span></i><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="color: #262626; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">The day of
the ultrasound was the day it all started to <b><i>unravel</i></b>.
Gradually I was able to grasp at the bare threads of what I had called my faith
and cover the nakedness of my reality for a few more months.</span><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<a href="http://3.bp.blogspot.com/-O59SPX8PhSg/UxO4UhO23UI/AAAAAAAAAHg/etaaZvf4_30/s1600/Farley+pic+2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-O59SPX8PhSg/UxO4UhO23UI/AAAAAAAAAHg/etaaZvf4_30/s1600/Farley+pic+2.jpg" height="200" width="150" /></a><span style="color: #262626; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">And then the
preacher said there was a plan. That God had a plan for every one of our days
before we ever drew a breath. Even for this? For me? For her?! </span><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="color: #262626; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">That was the
end of religion as a philosophy, as a way of life for me.</span><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<b><i><span style="color: #262626; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Unravelled.</span></i></b><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="color: #262626; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">I had
experienced God's presence in my life at critical moments. Junctures of crisis.
At my dad's deathbed. Through smokey, sweaty, drunken attempts to fill the
aching void. At my first pregnancy's porcelain funeral. In front of a lonely
post-partum sink full of dishes.</span><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="color: #262626; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">But, then,
here was this precious, fragile, fiery bundle of life with endless unknowns who
had shattered the boundaries of what I thought I had mastered as a mother.</span><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<b><i><span style="color: #262626; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Unravelled.</span></i></b><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #262626; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">A placation,
a momentary salve from a Higher Power wasn't going to cut it this time. If He
was out there and could be found, I had to have real answers, even if they were
not what I wanted to hear.</span><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #262626; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">At my
invitation, He made Himself known. Not how I expected. Not in my time. Beyond
my dreams.</span><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #262626; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Some
questions have been answered</span><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #262626; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">but not
others.</span><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #262626; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">I am still <b><i>unravelled</i></b></span><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="color: #262626; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">but I am at
peace.</span><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #262626; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">I know I am
not alone. And more importantly, she isn't. I don't know yet whether He planned
this for her. I am less certain whether it would be good or bad if He did.</span><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<a href="http://2.bp.blogspot.com/-iBMebUQQL4o/UxO4Un1Iu8I/AAAAAAAAAHo/mwWpIv1IgG4/s1600/pic+1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://2.bp.blogspot.com/-iBMebUQQL4o/UxO4Un1Iu8I/AAAAAAAAAHo/mwWpIv1IgG4/s1600/pic+1.jpg" height="151" width="200" /></a></div>
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<span style="color: #262626; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">I've learned
how to hand the pain to Him, the struggle. How not to have to be in control.
How to rest in the uncertainty of life - both mine and hers. How to sign the
spiritual surgical consent form and that it's my choice. That there is no wrong
question to ask and that there may never be answers.</span><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="background: white; color: #cc0000; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">I've completely <b><i>unravelled.</i></b></span><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<a href="http://2.bp.blogspot.com/-oSHlU_jusl0/UeI5gm2ut_I/AAAAAAAAAMw/VQGb-Q3yUFg/s1600/Farley+pic+2.jpg"><span style="color: blue; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin; mso-no-proof: yes; text-decoration: none; text-underline: none;"><v:shape alt="https://2.bp.blogspot.com/-oSHlU_jusl0/UeI5gm2ut_I/AAAAAAAAAMw/VQGb-Q3yUFg/s320/Farley+pic+2.jpg" href="http://2.bp.blogspot.com/-oSHlU_jusl0/UeI5gm2ut_I/AAAAAAAAAMw/VQGb-Q3yUFg/s1600/Farley+pic+2.jpg" id="Picture_x0020_40" o:button="t" o:spid="_x0000_i1025" style="height: 240pt; mso-wrap-style: square; visibility: visible; width: 207pt;" type="#_x0000_t75">
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<b><span style="color: #262626; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">And that's ok.</span></b><span style="color: #262626; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"> </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<!-- Blogger automated replacement: "https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F2.bp.blogspot.com%2F-oSHlU_jusl0%2FUeI5gm2ut_I%2FAAAAAAAAAMw%2FVQGb-Q3yUFg%2Fs320%2FFarley%2Bpic%2B2.jpg&container=blogger&gadget=a&rewriteMime=image%2F*" with "https://2.bp.blogspot.com/-oSHlU_jusl0/UeI5gm2ut_I/AAAAAAAAAMw/VQGb-Q3yUFg/s320/Farley+pic+2.jpg" --><!-- Blogger automated replacement: "https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F2.bp.blogspot.com%2F-BakmcNKPaSo%2FUeI5a18CpwI%2FAAAAAAAAAMk%2Fu_5cej1wOeE%2Fs320%2Fpic%2B1.jpg&container=blogger&gadget=a&rewriteMime=image%2F*" with "https://2.bp.blogspot.com/-BakmcNKPaSo/UeI5a18CpwI/AAAAAAAAAMk/u_5cej1wOeE/s320/pic+1.jpg" -->Anonymoushttp://www.blogger.com/profile/03598548849284595605noreply@blogger.com0tag:blogger.com,1999:blog-3318413245516913889.post-39476921090718747902013-07-11T14:50:00.000-07:002014-03-12T05:51:30.398-07:00Heather Cole--Ten Day Cancer Scare<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br />
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br /></span></div>
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<a href="http://4.bp.blogspot.com/-2gvPoONDqBE/UxO03jNBlFI/AAAAAAAAAGc/DZhqtoERESQ/s1600/DSCN3985.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-2gvPoONDqBE/UxO03jNBlFI/AAAAAAAAAGc/DZhqtoERESQ/s1600/DSCN3985.JPG" height="150" width="200" /></a><span style="font-family: Cambria, serif; font-size: 12pt;">I will never forget what it
felt like to walk in darkness so dark my mind could not grasp up or down, right
or left, forwards or backwards. With hands outstretched I felt for every limb,
every leaf, trying to navigate through brush and around trees without smacking
into or tripping over them. I was terrified. I knew that if I got turned around
I would get lost, or much worse: I would come across an animal that was only
too happy to have me for a late night snack. I hadn't lived in East Africa very
long, and those National Geographic documentaries I had seen as a youngster
played in my mind. Most kids in the boarding school had lived overseas for most
of their lives and didn't think twice about wandering around in the endless
blackness of an African night. But I was 14 when we moved to the DRC: I was an
unseasoned MK.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
As insidious as sunburn on a cloudy day the process of 'seasoning' takes place
whether you welcome it or not.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
In many ways I feel like I am being seasoned by the many challenges of Noonan
Syndrome, wandering, tripping and grasping for branches along the darkness of
my journey. So many days are full of joy and celebrations of milestones, and
every day family life. But there have been several, dark days where I have
faced terrible fear that seeks to dismantle the ever-changing 'normal' we as a
family so desperately strive to attain.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
May 29<sup>th</sup>, 2013 was one of those dark days…</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
</span><b><i><span style="color: red; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Fevers</span></i></b><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">Rhyse had been having
fevers every day for seven days. Though a nasty, odd lung virus had been
weaving its way through the family, none of us had experienced fevers for more
than a day or two. Further, Rhyse had only had his new appendage (gtube) for
four weeks. It was certainly possible he had an infection in the stoma. On day
seven I called Rhyse's pediatrician, Dr. S, and managed to talk my way into an
appointment that day: not an easy task with the newly installed nurse line
where I am no longer "Rhyse's mom". Instead I am a complete stranger,
treated like a paranoid mom who doesn't know how to handle a fever. With teeth
clenched I calmly educated the nurse on Noonan Syndrome and how it affects
Rhyse, and that, "no, Tylenol is NOT going to be the cure all. And no,
Rhyse can't wait three more days."</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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A few hours later, with a screaming one year old in my arms, I walked into Dr.
S's office. She took one look at him and she knew too, something was amiss. And
even if it was a virus, not an infection, it was overtaking him and he needed
medical supervision, as usual thus another trip to the ER. This trip to the ER
would be no different than all the others, I thought.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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As I left the doctor's office I called my husband, Jon, and let him know he was
going to have to leave work early to be home when our two girls get off the bus
at 4pm. Dr. S had requested he stay overnight for observation-- no matter what.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<b><i><span style="color: red; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Not Just
Another ER Visit </span></i></b><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">Being very hopeful that our
hospitalization days were now off the radar for at least the summer I no longer
had my "just-in-case bag" packed. Because of this I had to stop at
home for maybe five minutes to throw some overnight clothes in a plastic bag. I
didn't even entertain the thought of more than a one night's stay.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<a href="http://3.bp.blogspot.com/-KbIhF8u3tic/UxO04d2HSbI/AAAAAAAAAGo/REJFKIB-Tc4/s1600/RhyseHospBed+5-31-2013+8-54-33+AM.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-KbIhF8u3tic/UxO04d2HSbI/AAAAAAAAAGo/REJFKIB-Tc4/s1600/RhyseHospBed+5-31-2013+8-54-33+AM.JPG" height="150" width="200" /></a><span style="font-family: Cambria, serif; font-size: 12pt;"><br />
My routine trips to the ER are not without stress. Rhyse is once again sick,
uncomfortable, scared of the personnel, and for whatever reason we are usually
arriving in the middle of the night when all sense of normalcy or social
appropriateness is severely lacking! If that isn't enough with every visit I
have to donne my educator hat, always answering that proverbial question,
"so what does Noonans mean medically?" or "what are his
diagnoses?" or my favorite, "how do you spell that?" Are you
kidding me? All that information is in his digital chart! Why on earth do I
have to spell something that's right in front of them? Okay, so I am being
cynical. But truth be told, Noonans seems more like a rare, tropical disease by
the way many medical professionals ask their questions! I'll get off my soap
box now…</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
Rhyse is 20 months old. He knows where he is the second we enter the parking
garage with its green and orange painted walls, signifying where to park for
the Children's hospital (Spectrum, the general hospital is attached to the
Children's Hospital). He knows the sights, the smells, and the bustling chaos
of the hospital. He knows that men and women who hurt him wear scrubs and carry
stethoscopes. His fear is evident: clenched hands, rigid arms and mottled body.
He begins to cry from the get go and begs, with his hands and eyes, not to be
taken out of his stroller. On any other occasion, anywhere else in the world,
he would rather be held. But in the hospital he clings to his stroller for dear
life, finding comfort in the idea that if he's buckled in the seat no one is
going to hurt him. To this day it pains me to pull him out of his place of
refuge to be poked, prodded, and squeezed, knowing he's in utter panic.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
After a quick weight and height check we were escorted to a room. It's an odd
feeling when you walk down the halls of your Children's ER and realize you know
your way around, you know each piece of children's wall art before you see it,
and you recognize most of the staff: and they recognize you. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
I looked up at the clock as I scooted onto the all-to-familiar, uncomfortable
gurney with the thin, plastic mattress made for little butts. The clock showed
three o'clock in the afternoon. I knew it was going to be a long, hard day, and
an even longer night. I had no idea this one day would turn into yet another
tailspin of emotions, confronting the kind of fear I never even imagined would
again be placed before me.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">As we muddled along through
each phase of ER protocol Rhyse became increasingly inconsolable. By the time
we had arrived at the ER his morning dose of Tylenol had long since worn off
and any control over the fevers it previously held was gone. Not wanting him to
be in any more agony than necessary I began pleading with everyone who came in
the door for Tylenol—I was told he had to wait for the IV. Each time we were
alone in the room I was tempted to give him a dose from my diaper bag stash.
But I knew in the long run he would end up with a double dose, so I held off
and tried to keep my nerves in check.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
</span><b><i><span style="color: red; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Calling
Nurse Number Four</span></i></b><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span><br />
<b><i><span style="color: red; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><br /></span></i></b></div>
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<a href="http://4.bp.blogspot.com/-jlEGcaREdZQ/UxO06yKXWbI/AAAAAAAAAGw/8eOQrgahpcA/s1600/RhyseMom.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-jlEGcaREdZQ/UxO06yKXWbI/AAAAAAAAAGw/8eOQrgahpcA/s1600/RhyseMom.JPG" height="150" width="200" /></a><span style="font-family: Cambria, serif; font-size: 12pt;">Throughout Rhyse's 20
months of life he has had numerous platelet transfusions, more blood draws than
I can count, three bone marrow aspirations, a gtube placement, several sedated
EKGs, and of course a sprinkle of unscheduled ER visits and nineteen days in
the NICU. IVs are a 'normal' part of his life. But Rhyse's body isn't so
obliging. Between Rhyse's small stature, petite bone structure,
hypersensitivity to pain, and veins as curly and winding as his gorgeous, red
hair IVs are a terrifying experience. What's more, finding a nurse who can
stick a vein and get a successful flush in less than three attempts is next to
impossible.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
On this day Rhyse endured the worst experience with IVs to date. Already
screaming from the effects of a high fever, complete with shivers and tremors,
nurse number one scanned his limbs over and over, careful to choose the best
site; his left arm. Historically Rhyse's left arm has indeed been the best
donor. But after a year and a half of donations the veins can no longer hold a
flush, and I warned the nurse as such. Nurse one tried anyway. After
nearly twenty minutes of fishing for a vein in two, left arm sites and watching
them blow, Mr. Nurse number one gave up. I reminded Mr. Nurse Rhyse was a hard
stick. I think he was actually relieved I wasn't upset with him for failing:
most nurses do. He bandaged up the two holes and called nurse two from Peds Transport
for help. When nurse two and her helper arrived they were confident they could
"save the day". I wasn't impressed with their enthusiasm. We
needed skill, not pride. True to form nurse two and her helper were overwhelmed
with the challenge and gave up as well. Now two more sites were bleeding, and
two more kiddy bandages were applied.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
At this point I noticed Rhyse's blood was unusually thin. I knew from
experience his platelets must have dropped to about 50k. Only three weeks prior
they were 93K, and had been holding in the 90s for nearly a year. I didn't say
anything to the nurses. I have also learned that if I come across as too
knowledgeable, nurses get offended. I just tucked that notion in the back of my
mind and concentrated on cuddling Rhyse throughout the ordeal, though by this
point my nerves were shot and so was Rhyse.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
With continued screaming and still no Tylenol I was getting overwhelmed with
emotion. I held Rhyse close to me throughout every attempt, but no amount of
mommy love can take away such fear and pain. I can't even say, I've 'been there
too'. I haven't. I can't understand. I can only hold and love.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
When nurse two failed a NICU nurse was called in. Rhyse was now beyond the
point of no return. Each time someone slid open the sliding glass door and
walked in he pointed at them, looked up at me with eyes filled with fear, and
shook his head no. That was the first time I had ever seen him put two
communication pieces together: and the last time. And when they stepped towards
him, he screamed for all he was worth.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">NICU nurse three spent an
inordinate amount of time trying to find a vein that looked straight enough and
large enough for an IV. After much fumbling she made her two attempts, and
failed. Now we were up to six bleeding sites tightly covered with gauze and
daffy duck band aids.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
<br />
Nurse one came back on the scene asked if I knew anyone in particular from
Hematology who could help. I told him, "Mary". Historically she was
the only nurse on the tenth floor who was successful during his twice a week
platelet transfusion days. Nurse one called Hematology, but Mary wasn't on the
floor that day. Another nurse came in her stead. She tried. She struck out. She
left two more holes to bandage.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
Nurse one now at his wits end got the OK to give Rhyse Tylenol orally. Finally.
I still don't understand why someone let two hours lapse before agreeing but
those aren't answers you get in the ER.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<a href="http://1.bp.blogspot.com/-fkupmJ1DIuU/UxO02LxP4aI/AAAAAAAAAGY/M2NCeNMCDOY/s1600/Hosp01.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-fkupmJ1DIuU/UxO02LxP4aI/AAAAAAAAAGY/M2NCeNMCDOY/s1600/Hosp01.JPG" height="200" width="193" /></a><span style="font-family: Cambria, serif; font-size: 12pt;"><br />
After two and a half hours of IV attempts Rhyse still needed an IV line.
Honestly I don't remember where the fourth nurse came from. The first stick was
a bust, but the second—in the temple—finally held the flush; at least for a few
hours. The nurses left the room leaving behind trash, a bloodied blanket, rolls
of medical tape and used scissors sitting on the gurney. I cleaned up after
them, as usual.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
With IV placed, Tylenol administered, and blood draw sent to the lab the ER
doctor arrived with his game plan. Mind you it was now 6pm, three hours after
arriving and both Rhyse and I were beyond exhausted. I don't remember the
doctors' name. And it doesn't matter. This ER doctor lit up when he saw Rhyse
had Noonans. Early in his career he had interned with Dr. Noonan herself.
Finally a doctor who didn't have to look up Noonan Syndrome on wikipedia before
coming into the room! By the way doctors, if you want to solicit complete
distrust in a patient's mom, just keep telling them that you had to look up
Noonans on the internet! At least pretend you know.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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DR. ER</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
Dr. ERs plan was to start eliminating possible issues from the top. He ordered
a chest x-ray for pneumonia, CT scan for possible stoma infection, and
antibiotics <i>for just in case</i>. In truth neither I nor the ER Dr.
believed anything would come of the tests. Rhyse probably had a virus that
overtook his fragile, petite body and needed more powerful drugs than I could
give him at home.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
After a time transport arrived and wheeled Rhyse and I to the x-ray room. Just
the movement alone distracted Rhyse and he began to calm down just a stitch. By
the time we were in the room he was interested enough in his surroundings that
I was able to put him in the x-ray chair without any fuss. The tech quickly
took two pictures and then wheeled us back to our tiny, stale room with the
ugly pastel curtains with lines and circles.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
Within minutes Dr. ER had the computer images in front of him, and a report
from the tech that said, "slight thickening in the lungs possibly due to
lung virus." Regardless pneumonia was ruled out—as expected.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
Next on the list was a CT-scan. What an ordeal that is. The nurse came in the
room with two, monster size cups of water laced with dye to slowly administer
via Rhyse's gtube. I sucked the fluid up into one of my 60 ml syringes and ml
by ml pushed each cup of water into his stomach, over the course of two hours.
At 7pm he was finally eligible for the scan, but no one came to get us. After
nearly an hour we were still waiting. If I had the energy I would have tracked
down a nurse and inquired. But I was too tired, and didn't want to leave Rhyse
alone on a gurney with side rails so large his entire body could roll through!
Finally a nurse came in saying he over-heard someone on the phone discussing
Rhyse's CT. Apparently the problem was IV number 8, the scalp IV. Up to this
point no one had experience administering the CT-scan dye into a scalp vein:
they didn't know if there would a negative reaction or not. I didn't even know
there <i>was</i> going to be more dye in the first place. Doctor
patient communication in hospitals is rarely up to par. To complicate matters
no one wanted to be personally responsible for the dye push if the dye caused
Rhyse's skin to burn. I assured Mr. Nurse that I would not blame anyone if
there was a skin reaction. Rhyse's immediate health was more important than
suing a hospital over a skin irritation. Fortunately he took the cue and
volunteered to do the push. I was more interested in getting the CT scan of his
belly than fearing what <i>might be</i>.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
When we finally arrived in the CT room it was late evening. We had been in the
ER for several hours and I was wishing we were already in Observation where I
could cuddle with Rhyse and try and get some much craved for sleep. Having been
assured the CT was a quick and painless process I looked forward to getting it
done and getting the results.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
But easy was not to be. As Mr. Nurse was flushing the dye into the right side
of Rhyse's head his head began to balloon. Sure enough, the vein—the eighth
attempt—blew. Thankfully the tech realized the situation wasn't going to get
any easier. He told me to hold Rhyse's arms up while he moved him in and out of
the machine, and we will get what we get! Thankfully the scan was successful.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
At this point Rhyse was so exhausted he was nearly limp in my arms. His eye
lids were lobster red from lack of sleep, and his body pale from trauma. He
needed sleep. I needed sleep. Somewhere along the line he passed out on my lap
while I stared at those pastel colored curtains that covered the glass sliding
door to the room.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
While we were waiting the test results all the shifts had changed, giving us
new nurses and a new doctor. With the shift change came more vitals, more
questions, and more and more waiting. The closer the night drew towards
midnight the louder and more crazy the ER became: it's a zoo in the middle of
the night!</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
Seven hours after arriving to the ER the night shift doctor came in and greeted
us. I was beyond the point of being able to process anything and just needed
peace and quiet to smooth out my nerves, and allow Rhyse some undisturbed rest.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<a href="http://4.bp.blogspot.com/-Jr64A98P1lQ/UxO1Zz_FJQI/AAAAAAAAAG0/L2PJgRNDufc/s1600/DSCN3927.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-Jr64A98P1lQ/UxO1Zz_FJQI/AAAAAAAAAG0/L2PJgRNDufc/s1600/DSCN3927.JPG" height="200" width="171" /></a><span style="font-family: Cambria, serif; font-size: 12pt;"><br />
I was not prepared for what the doctor had to say.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
</span><br />
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<b><span style="color: red; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Emotional Tailspin</span></b><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">In a very kind,
compassionate voice she relayed the news. The CT scan had revealed a
large, long tumor along his spine and sympathetic nervous system: “homogenous
but abnormal posterior mediastinal soft tissue density.” We were to be admitted
to the 7<sup>th</sup> floor for the night and would begin the next day
with an MRI, more blood tests, and a urine catch. “Don’t worry until you
have to” were her words. Yea, ok. She slipped out the door and
tears slipped out of my eyes…I was too tired to think clearly, or keep my wits
about me. It was 1130pm and my emotions were already worn to the
bone. I was alone and tired and I had no resistance to fear.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">When the doctor
walked out of the room I melted. I was suddenly thrust back to the day
Rhyse was born, October 17<sup>th</sup>, 2011 when an attending doctor told me
Rhyse was “probably terminal.” I never allowed myself to go back there
emotionally, nor did I entertain the idea that I would once again be looking at
the word, “terminal.” Of course I didn’t have any information at this
point, but no one was being overly positive. I called my husband, just
like 20 months prior, and told him the news. I can’t speak for him, but
for me it was unbelievably difficult to comprehend the situation.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">In today’s
world any words that even come close to relating to cancer are terrifying:
mass, foreign body, tumor, and the like. When I say my entire body was
trembling from the inside out, I am not exaggerating. It was all I could
do to keep my hands still enough to function normally. I mentally fought
against every thought that would take me down the road to the death of my son.
I have been through just enough in my life to know that there is great wisdom
in, “take every thought captive” found in scripture. If I allowed myself
to venture down the wrong mental path, I would not have been able to withstand
the stress. I had to force myself to wait for all tests to come back and
take the information one piece at a time. I would be lying if I said I wasn’t
overwhelmed off and on throughout those first few days of blood tests, MRIs,
and urine tests. But I did my best to live moment by moment, hanging onto
my Faith, my family, and all the encouragement I received from the RAS
family. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">At 2am Rhyse
was finally admitted to the seventh floor. I have no idea what takes
hours to get admitted to a room: the wait was impossible. When at last
Rhyse was put into his mammoth size crib, and I had the overly firm, orange
love seat with geometric shapes pulled out to a bed I literally passed out in
exhaustion. Not long after getting into the room Rhyse had IV number 9
put in: I didn’t hear a thing. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">The morning is
a blur. I remember finding out that the MRI was scheduled for 11am, and
several doctors, nurses and hematology specialists coming and going throughout
the day. We were once again in a waiting pattern and nothing could hurry
the process along.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">As I stared out
the floor to ceiling windows at the city below, an all too familiar sight, I
felt like I had been swept into a place where a time continuum didn’t
exsit. My entire life was now encapsulated into one little hospital room.
What transpired, what information I would be given, what outcomes there
were—all occurred in one small space, in one small moment in time. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">Thursday was
spent holding Rhyse through raising temperatures, discomfort, and more
waiting. When my husband asked one of the Hem/Onc doctors if she was
suspicious about what they might find, she said, “yes.” He has JMML and
there’s not much doubt he has developed Neuroblastoma. But at this point all we
knew is an MRI would confirm the tumor and give the Tumor Board something tangible
to analyze. The MRI doesn’t diagnose, it just gives a road map for
further tests and an operation.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">Late Friday
afternoon two Hematology doctors arrived with the report from the Tumor Board
meeting that had met early that morning. Both doctors are kind, caring,
truly compassionate people. Helen Devos Children’s 10<sup>th</sup> floor
hematology department never ceases to amaze me with their mix of
professionalism and humanness. I love them all.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">When the two
doctors walked in the room Jon and I were standing next to Rhyse’s crib.
My insides had not yet calmed down from the initial shock two days earlier, and
fear was getting its grip on my heart. As the hematologists calmly gave
their report the room suddenly started turning black, sweat appeared out of
nowhere and I felt myself starting to collapse. Fortunately I was
standing in front of the crazy, modern patterned rocker with the footstool
that’s nearly impossible to put down. I just bent my knees and plopped.
One of the hematologists noticed I didn’t look so good and asked if I was ok.
Choking back tears I said, “We’ve just gone through so much. I wasn’t prepared
for another emotional upheaval.” Truth be told I am never prepared, but
being blind-sided by this tumor was almost more than I could bear. We had no
idea this year would be more difficult than his first year. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">As the doctors
began unfolding their plan for a biopsy, 2 bone marrow aspirations, and testing
his urine for catecholamine’s I could barely soak it all in. Through their
explanation of spinal cancer, and encouragement despite circumstances I was
still completely overwhelmed by the whole scenario. So many thoughts
raced through my mind. The worst case scenarios always rear their ugly
heads first and are the hardest to battle. My most pronounced fear was
losing Rhyse and having two little girls (sisters) broken inside. Rhyse
and his sisters have an unusually tight bond. No doubt from all the trauma and
separations and hospitalizations. My three kids are happiest when they
are all together in one room: I was terrified for my girls. I have
always battled anxiety, and twice in my life it struck with a vengeance.
But through those two difficult times I learned some valuable lessons: one, the
mind is a powerful tool against anxiety and two, without the Lord I have no
power at all. And so as fear and anxiety constantly beat at my door, I
battled back. Sometimes they won, sometimes I won.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">Pictures of all
the babies in the RAS family that didn’t make it (on FB) kept passing through
my mind. Would I lose my baby too? I remember one of the phases I went
through in the first three months of Rhyse’s life. Rhyse was born with
thrombocytopenia so he required near daily platelet transfusions. I spent
long hours talking with moms and dads and grandpas and grandmas whose kids had
cancer. In that time I experienced guilt. I don’t understand
why. I felt guilty that Rhyse was not as “bad” as a child with cancer. It
is not that I wanted Rhyse to have cancer: I just can’t explain where the
emotion came from. It’s completely irrational. But there I was,
facing the reality that now I too might be one of those moms —forced to live in
that black place of unknown, whose child is given some imperceptible percentage
chance of surviving.<o:p></o:p></span></div>
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<br /></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">On Friday,
three days after arriving in the ER, Rhyse’s doctors agreed we should go home
and come back the day after Memorial Day (three days later) to begin the array
of testing. Packing up and leaving was not without emotion.
Usually leaving the hospital is a momentous sigh of relief, not unlike escaping
some sort of mental prison. But this time it was just more time to wait
and pray and believe—regardless of what my emotions were screaming.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
</span><span style="color: red; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Three Day Break</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">Saturday
morning was an odd time. I had two different documents to read and sign
regarding cancer research, and donating the biopsy so others could use it to
‘gain more understanding’ of Neuroblastoma. Cancer: I could hardly wrap
my brain around those words. Rhyse’s doctors were assuming he had cancer
and someone already wanted a piece for research.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">I wanted to
keep things as light as possible for the whole family’s’ sake. Walking
around in a trance wouldn’t help anyone, especially not us parents who knew the
gravity of the situation. So with this in mind I decided we would have an
hour in the morning where each parent would take a child and do something; an
impromptu date. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">I took my six
year old daughter, Maggey, out for breakfast and then just drove. She
kept asking me where we were going, and I really didn’t know. I just
picked a direction. As we were cruising along a familiar route I spotted
an estate sale sign. Being of the frugal sort myself, more forced by
financial constraints than anything else, I decided to stop. I do take great
joy in finding that incredible deal for something I really need. On this
day I was not let down.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">Somewhere
during the week, just a day or two before Rhyse was admitted to the ER and then
the hospital, we had a freak wind storm that caused my six person, inexpensive
glass, outdoor table to explode into a billion shards of shrapnel. I had
tried a few times to sit on the ground and precariously pick them up, piece by
piece. But each time I quit in frustration with the enormity of the job, and with
several bleeding fingers. The only way I could even imagine cleaning the
mess up was with a shop vac. And we didn’t own one. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">To my great
delight I found a large shop vac for seven dollars at the estate sale.
However, I was not just excited, I was truly thankful. The Lord, as
always, found the smallest of ways to remind me He’s there—I am not alone, and
I am loved. That small piece of delight carried me through the weekend,
serving dinner to extended family on Memorial day, and back into the hospital
on Tuesday morning.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">Late Monday
morning my in-laws had arrived from Indiana to stay with our daughters while we
were once again contained in the hospital with Rhyse. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">Thank God for
family.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<b><span style="color: red; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><br />
Return to Hospital</span></b><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">Checking back
into the hospital is no easy task when you had just checked out three days
prior. Rhyse was frantic and unwilling to be taken out of his stroller,
screaming and shaking from fear. The minute we arrived on the tenth floor
he was ready to fight tooth and nail to get back on the elevators. He
pointed at the doors with all he was worth, and it was a wretched feeling
pulling him in the opposite direction.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">By the time we
arrived on the tenth floor the entire staff had heard about Rhyse’s bout with
the IVs a few days prior, and everyone was nervous about repeating the
incident. I did, however, take great comfort in being on the tenth floor—my
‘second home’ since Rhyse’s birth. If there’s anywhere in the 12 story
building I feel most comfortable and encouraged and loved, it’s on the hematology
floor.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">After waiting
over and hour for any signs of life, Mary and Kris walked into the room, two
nurses that have been with Rhyse since birth. These ladies are
fantastic. But what gave me hope and comfort was their attitude and
actions. They stormed into the room saying, “Mary and I just prayed and
asked Jesus to help us get this stick the first time and we believe it!”
Mary is the nurse I had asked for while in the ER, but hadn’t been on shift
that day. And would you believe, she did it! The very first try was
successful! They will never know how much their prayer and their words
meant to me. Those tiny words, “thank you” aren’t nearly enough. A few
minutes after the stick, Dr. F walked into the room, Rhyse’s primary
hematologist, wrapped me up in her arms and just hugged. I forced back
the tears, thankful that Rhyse had such an incredible team of doctors and
nurses. We were in a holding pattern of complete relief behind one door,
or terrifying cancer behind the other; which door would I be thrust through?<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">After the IV
and blood draws Rhyse was admitted to the ninth floor to begin preparation for
a biopsy and bone marrow aspiration on Wednesday. His platelets were at a
12 month low at 53k and he needed at least one transfusion during the night in
order to have the surgery. Jon arrived after work and we spent the evening in
casual conversation, trying not to focus on the worst.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">Late that
evening I left for home, leaving Jon to spend the night with Rhyse so I could
go home and be with my girls, and get some well overdue sleep. We both
know that sleep deprivation and stress are a lethal combination, so we always
make sure we take turns sleeping at the hospital.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: red; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Surgery</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">On Wednesday
morning I returned to the hospital anxious for the surgery to get
underway. Fortunately he was scheduled fairly early so the wait wasn’t
too long. I don’t know much about biopsies and what information the
doctors have immediately, and how long it takes to get comprehensive
results. But waiting seems to be the underlayment of our lives with a
child who has a genetic mutation. No fast-food answers, ever.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">After a couple
of hours we were called into the parent meeting room to meet with Dr. D, the
surgeon who had just finished the biopsy. He handed us a picture of the
procedure, and explained that although he didn’t have any immediate answers,
neither did he find what he expected. We were left puzzled by that
comment. I stared at the photo page he handed me, trying to figure out if this
was a good ‘unexpected’ or a bad ‘unexpected.’<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">As soon as
Rhyse was awake and stable we were escorted back to our room on the tenth
floor. While I concentrated on comforting Rhyse who was in great pain
from the three incisions, and add on circumcision we requested, nurses, doctors
and surgeons flowed in and out of the room to do their evaluations and
vitals. Apparently while being under the anesthesia some fluid pooled in
his lungs and made it difficult for him to breathe. His chest and tummy were
thrusting up and down, trying to get enough oxygen to function. The
nurses were very concerned. Soon the order was given to start him
on O2. Slowly his sats climbed back into the 90s.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">As we have
experienced in the past, Rhyse’s ability to handle pain is slim to none.
With Rhyse on morphine, and then vicodin, he was slipping in and out of a drug
induced stupor. As crazy as it sounds, being partially sedated with pain meds
is a blessing after surgery.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">Like the
previous night, I went home to sleep while Jon remained at the hospital.
My girls need mom just as much as my son so I’m always trying to find that
balance during Rhyse’s hospitalizations. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<a href="http://3.bp.blogspot.com/-LOgCMJZVtGQ/UxO1p60NvMI/AAAAAAAAAG8/arK_9V5Bwxo/s1600/RhyseWindowHosp+5-24-2013+2-18-44+PM.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-LOgCMJZVtGQ/UxO1p60NvMI/AAAAAAAAAG8/arK_9V5Bwxo/s1600/RhyseWindowHosp+5-24-2013+2-18-44+PM.JPG" height="150" width="200" /></a><span style="font-family: Cambria, serif; font-size: 12pt;">Thursday
morning I arrived to find that Rhyse’s bloods had come back with elevated liver
cells, but the bone marrow aspiration was normal: two conflicting
results. Why elevated liver cells? The doctors never did figure
this one out.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">Hearing that
the bone marrow results were normal was a huge mental relief. In my mind
if the bone marrow wasn’t showing early blasts, then maybe the tumor was going
to be benign. At least that was my hope and my prayer. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">As the mental
battle for peace waged on we continued to hold tight for the big results to
come in. Mental pictures of chemo infusions, more surgeries, more
biopsies, a port, and more waiting were beating me over the head. “Take
every thought into captivity.” My mantra. My Faith.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">When I woke up
Friday I was both excited and terrified to know the final results of the
biopsy. The previous week’s emotions had played havoc on my outlook on
life, and I needed a peak into hope. I wanted to put the word,
“Neuroblastoma” away forever! I wanted to go on living with the mundane
ER visits, and sickness, and complications; just not cancer! Selfish? Oh,
yea. There are a few times in life where being selfish is indeed
warranted.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;"><br />
</span><span style="color: red; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Results</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">Friday
afternoon Dr. F, Rhyse’s primary hematologist walked into Rhyse’s room with a
big smile. She walked up to me and hugged me and said, “it’s not cancer!”
We don’t know exactly what it is or where it came from or what we are going to
do medically going forward, but at least we can tell you what it’s NOT!
She was so excited she asked for the Dr. S’s phone number, Rhyse’s
Pediatrician, so she could personally tell her the wonderful news! When
she hung up she said there were tears on the other end of the line.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">Jon and I
hardly knew how to act. For seven days our emotions were blasting full
steam ahead down a dark, dreary, scary track and back again! You would
think I would have jumped up and down with joy. But I didn’t. I found
that putting my mind in reverse was harder than I anticipated. I smiled,
but my mental anxiety took much longer to dissipate. I was relieved, but
I found myself needing to sort out my emotions one by one before I could fully
grasp what I had been told!<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">For the
remainder of the day and into late Saturday afternoon Rhyse was in recovery
mode, and so were we!<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Cambria, serif; font-size: 12pt;">Rhyse was
released Saturday afternoon and suddenly everyday life had to begin where it
left off a week earlier. If there’s such a thing as mental whiplash, that
is it! Packing up and leaving the hospital with more medical trauma behind us,
more medical jargon learned, physical scars, and emotional scars was once again
life changing. With each new medical issue we confront we increase the
foreign language only a few speak: the language of pain and fear, joy and
sorrow, blessings</span><span style="font-family: 'Times New Roman', serif; font-size: 18pt;"> </span><span style="font-family: Cambria, serif; font-size: 12pt;">and victory—all
wrapped up in a child with a syndrome. Maybe I'll call it the Language of
Noonans.<o:p></o:p></span></div>
<span style="font-family: Cambria, serif; font-size: 12pt;">
<br />
</span></div>
<!-- Blogger automated replacement: "https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F2.bp.blogspot.com%2F-5qJSpFy2Dx4%2FUe9loclGqlI%2FAAAAAAAAAM8%2FbRYcFY6KJ_Q%2Fs320%2FDSCN3927.JPG&container=blogger&gadget=a&rewriteMime=image%2F*" with "https://2.bp.blogspot.com/-5qJSpFy2Dx4/Ue9loclGqlI/AAAAAAAAAM8/bRYcFY6KJ_Q/s320/DSCN3927.JPG" -->Anonymoushttp://www.blogger.com/profile/03598548849284595605noreply@blogger.com0tag:blogger.com,1999:blog-3318413245516913889.post-69191089577881664962013-06-01T14:35:00.000-07:002014-03-12T05:52:08.487-07:00Yesil Cruz--Baby Brother Ivan<br />
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<span style="font-family: Cambria, serif; font-size: 12pt;">My baby brother
passed away 18 years ago, when I was 11. I never understood why he was always
sick and why such a small baby had to go through so many medical procedures.<o:p></o:p></span></div>
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<a href="http://2.bp.blogspot.com/-e1gqmwfyu_s/UxOx29qxIqI/AAAAAAAAAF0/NdaNlqmSFVg/s1600/IMAG2124.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-e1gqmwfyu_s/UxOx29qxIqI/AAAAAAAAAF0/NdaNlqmSFVg/s1600/IMAG2124.jpg" height="200" width="111" /></a><span style="font-family: Cambria, serif; font-size: 12pt;">Recently, while
going through some paperwork, I found an autopsy report and a letter thanking
my parents for allowing the autopsy. All this time I thought my baby brother
had one purpose in life--to change our lives in some way. But reading that
report made me realize he had a bigger purpose in life. Because of him doctors
could study this rare condition. So in some way he made a difference not only
in our lives, but he also contributed back to society. That was his purpose in
life.<o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"><br />I could never
thank Dr. Alvaro Galindo enough. He made things so much easier for us. He
was compassionate toward my family.</span><span style="font-family: Cambria, serif; font-size: 12pt;"> </span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">I didn't know
back then what I know now. Ivan was diagnosed with Noonan Syndrome and had gone
through surgery the day after he was born. He had an aortic valve graft. He
spent most of his days at UCLA. When he got to come home he was always
surrounded by home health nurses, and around the clock medications. In two
occasions we had to call 911.<o:p></o:p></span></div>
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<a href="http://3.bp.blogspot.com/-xArKCZNVtAM/UxOx2AuSs5I/AAAAAAAAAFs/BIzqZDSqYKM/s1600/63415_4075336620169_1159527144_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-xArKCZNVtAM/UxOx2AuSs5I/AAAAAAAAAFs/BIzqZDSqYKM/s1600/63415_4075336620169_1159527144_n.jpg" height="200" width="200" /></a></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">At that time we
lived near Northridge Hospital. My mom was told that if he was ever to have an
emergency Northridge Hospital did not have the necessary equipment to take care
of him. The day he passed away I remember my mother was concerned about him
because his lips and nails were bluish. And knowing she had no other choice
took the next bus available to UCLA. Unfortunately she got there too late. He
passed away of a heart attack.<o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">Though there
are sad memories there are good ones too. I heard him laugh. I never knew a
baby could be so happy and able to smile while still going through all kinds of
medical procedures.<o:p></o:p></span></div>
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<a href="http://4.bp.blogspot.com/-bYcWz3hQrHU/UxOx3EmA75I/AAAAAAAAAGI/M9KuxP0fOm4/s1600/me.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-bYcWz3hQrHU/UxOx3EmA75I/AAAAAAAAAGI/M9KuxP0fOm4/s1600/me.jpg" height="200" width="143" /></a><span style="font-family: Cambria, serif; font-size: 12pt;">I know there’s
hope to finding a cure. Maybe God brought him here for the sole purpose of
making people more aware of this condition. I didn't know about Noonan
Syndrome. I had to do research in order to know what my brother had.<o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">My brother
lives in my heart. This is why I decided to contact you to somehow contribute
to this cause. I have nothing to offer but my support. I know that many things
have changed and the medical field is well advanced now. I never lost hope
while Ivan was alive. I still have hope that one day we will be able to find a
cure. Ivan changed my life those 5 months he was on earth. Because of him I
want to become a registered nurse.<o:p></o:p></span></div>
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Anonymoushttp://www.blogger.com/profile/03598548849284595605noreply@blogger.com0tag:blogger.com,1999:blog-3318413245516913889.post-45609560121739352722013-05-01T14:21:00.000-07:002014-03-12T05:53:14.699-07:00Katie Thorstenson--Drew Boo<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Cambria, serif; font-size: 12pt;">November 7<sup>th</sup>,
2011… and I remember it like it was yesterday. This marks a day that by
far was one of the most heart wrenching moments in my life and never before did
I ever feel that time just stopped and everything else was moving in slow
motion. Before this date, I honestly didn’t invest much thought into this
genetic test because I never thought for a minute something would be
“wrong.” Selfishly, I opted for this test because it was another chance
for me to see my beautiful child live on screen…. Little did I even think of
what could possibly be wrong…. It couldn’t…. I mean why would it????<o:p></o:p></span></div>
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<a href="http://1.bp.blogspot.com/-NyNz8mOm2QQ/UxOukIBI_jI/AAAAAAAAAFI/SYQCVQyXuk0/s1600/pic+2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-NyNz8mOm2QQ/UxOukIBI_jI/AAAAAAAAAFI/SYQCVQyXuk0/s1600/pic+2.jpg" height="200" width="151" /></a><span style="font-family: Cambria, serif; font-size: 12pt;">We were brought
back into the ultrasound room. I was so anxious and excited to see my
little one moving around. As I laid back on the table, the technician began
the ultrasound. It was honestly surreal to see Jake’s little
brother/sister kicking away. She began to point out different parts of my
little one’s body and it was pure joy….. Then, she pointed out what she
referred to as a “halo.” I explicitly remember her saying…. Do you
see this???? Foolish me… in the most excited and pure way says YEAHHHH…
thinking it was something fun… she then follows up by saying… this shouldn’t be
here…. This is fatal… It was in that moment that time stopped… What do
you mean it shouldn’t be there… Fatal… WHAT???? What does that even
mean…. I can still remember that cool feeling take over my body and
I am about ready to pass out…. The technician quickly escaped the room to
go get the doctor and I began to wail. I couldn’t do anything but
sob… I had waited for another baby for what seemed like an eternity and
after a couple years of trying with a miscarriage… WHY ME??? WHY
AGAIN??? <o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">The time
following this a doctor sat us in a consultation room and everything that came
out of his mouth seemed so foreign to me at the time. It was a lot of
genetic talks about chromosomes and cystic hygromas, fluid, etc….
Basically, at this point the diagnosis was that my unborn child had a large
cystic hygroma developing at the base of his brain. They described this
as often times due to a chromosomal problem and they strongly advised that we
do a CVS testing to confirm this finding. I was heartbroken… My heart had
been shattered into thousands of pieces and I didn’t even know how to pick them
up. The suggestions they made to me at the time were absolutely
terrifying… <o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">The next week
was a blur. I was immediately taken in for a CVS testing which would
confirm the findings if there was a chromosome abnormality. I immediately
got the FISH results that proved their initial theory wrong… My child didn’t
have any chromosome abnormalities…. I waited for the full panel and also
showed no abnormalities…. At this point it was when I decided I will
leave this in God’s hands. They had given my child a 5% chance to make it
to the 20 week ultrasound…. It was also at this time I decided to find
out if it were a boy or a girl…. <o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">This was the
happiest news I had been given to date…. A boy!!!!!!!!! Drew
Michael Thorstenson…. How wonderful did that sound. I now knew who
I was fighting for… A little brother for Jake to love… Another boy to fill this
house with his muddy feet… I couldn’t wait!!!! This little boy was going
to be a fighter….<o:p></o:p></span></div>
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<a href="http://1.bp.blogspot.com/-yzSVxR7KmFI/UxOujqkE5oI/AAAAAAAAAFE/oNgH2wm3IFs/s1600/drew+4.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://1.bp.blogspot.com/-yzSVxR7KmFI/UxOujqkE5oI/AAAAAAAAAFE/oNgH2wm3IFs/s1600/drew+4.jpg" height="149" width="200" /></a><span style="font-family: Cambria, serif; font-size: 12pt;">The weeks that
followed this time period were grueling… Every day I wondered if I would be
able to carry him to term. If it wasn’t a chromosome abnormality… What
was it??? Was it nothing…. Were we all worried for nothing… The
ultrasounds that followed… 14 weeks… 16 weeks…18 weeks…. All were showing a
resolving cystic hygroma… It got to the point that it was almost
non-existent…. In the meantime… we did opt for a full panel of genetic
testing including a test for Noonan’s Syndrome…. Each week… the news kept
getting better… It was the day I turned 19 weeks that I received a phone call
from the genetic counselors department to change my appointment to another
hospital… It was at that point… the last test we were waiting on… I knew it
from the minute I heard them on the other line…. My suspicions were confirmed
moments later… My baby boy had Noonan’s Syndrome… I was a wreck again..
The emotional roller coaster that I had been on for 2 months… The ups and
downs… Everything again came crashing down…. I felt weak again…. And crushed….<o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">This was the
day that forever my life changed…. I was not going to give up on my baby… He
deserved every chance and I swore to myself I would become his advocate and
learn everything I could about this syndrome so he could have the best chance
at anything life wants to throw his way. I studied…. And hard…. I found
every support group that the social media had to offer… I found an amazing
community online on Facebook that I will be forever grateful for… I found this
special network who was nothing but completely supportive of my situation and
sharing stories of their kiddos and some adults and seeing this world I was
about to come into. I would be lying to say I wasn’t scared but if there
was one thing I was…it was prepared…. Everybody always uses the word…
“normal…” I suppose I don’t like the use of that word anymore… What is
“normal.?” I certainly am not “normal…” And it was then when I coined my
favorite phrase… This is my “new normal,” and I was going to embrace the last
of this pregnancy with nothing but smiles and anticipation for my beautiful son
Drew Michael to enter into this crazy and wonderful world….. He had defied all
odds up until this point… He had something to prove… and I couldn’t have been
more proud that God chose me as his mommy….. This little being had already changed
me…. In ways at the time I couldn’t even begin to comprehend…. And I was
excited… Sooo excited….<o:p></o:p></span></div>
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<b><span style="font-family: Cambria, serif; font-size: 12pt;">Part 2<o:p></o:p></span></b></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">Finding the inner strength you never realized you had…. <o:p></o:p></span></div>
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<a href="http://2.bp.blogspot.com/-_ckMTrVFzEE/UxOujsXfr5I/AAAAAAAAAFM/J5AI-1lFsXU/s1600/drew+3.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-_ckMTrVFzEE/UxOujsXfr5I/AAAAAAAAAFM/J5AI-1lFsXU/s1600/drew+3.jpg" height="148" width="200" /></a></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">The time was
finally upon us… The anticipation of carrying a child with a syndrome that you
can’t quite yet grasp was undeniably difficult. The spectrum for Noonan
Syndrome is so large that you truly are unaware of how your child will be
affected and there are times that the unknown is a scary place. But with the
support and friendships that I had already built proved invaluable…. And
truth be told, as I mentioned in Part 1… We chose this…. We left it up to our
faith and God who chose us to be this little guy’s mom and dad and that was a
deliberate action and I now get it… I might not have at the time, but gosh do I
understand why we were chosen NOW!!!! Our life was forever changed by
this amazing little boy who has so much fight, and is such a strong and
inspirational little boy. <o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">I was scheduled
for an induction on May 21<sup>st</sup>, 2012 with the understanding that I
would likely give birth to our baby boy sometime on the 22<sup>nd.</sup> It
was such a special day because this is also my mother’s birthday. My mom
is my best friend and I feel so lucky that Drew shares this day with her.
After some long, tortuous hours, it was finally time to have our baby….
Drew Michael Thorstenson was born at 7:20PM… Shortly thereafter, I went
into a state of shock…. All I wanted was to hear him cry and I was so consumed
by the emotional roller coaster that we had already been on… I just remember
everything flashing by and the anxiety that I had as he was being whisked away
by the doctors and nurses. It was one of the most terrifying experiences I had
ever encountered…. For fear that I will sound shallow, I was worried as to what
he would look like, but more importantly is his heart okay because 80% of
Noonan’s kiddos have congenital heart defects. There was so much emotion
built up to this moment I couldn’t even process anything…. I was honestly the
most scared I have ever been. Can I handle this??? Will I be able
to tend to his special needs?? So many thoughts and questions that seem
so silly now but at the time were so raw and real.<o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">After several
hours of recovering I finally was taken in to my recovery room. Drew
Michael was brought in to our room and I just remember gazing into those sweet
precious baby blue eyes. I was consumed with pure love and joy and if there was
a second I questioned anything, it was that moment that reaffirmed everything.
After some extensive testing, we were surprisingly released from the hospital
the normal 2 days later. His ECG had shown some mild pulmonary stenosis
and also an ASD that would be closely monitored by the Lurie Children’s cardiac
department and other than that, we were blessed with a wonderful little
boy. <o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">The first few
weeks were certainly tough and extremely frustrating from an eating
standpoint. While Drew was born 8lbs 11 oz… he wasn’t in any way shape or
form gaining any weight. Noonan’s kiddos have a tendency to have FTT
(Failure to Thrive). While we understood this a little, it definitely
didn’t make us feel that much better. We really wanted to figure out a
way to help him as best as we could. <o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">It was during a
routine ECG when Drew was 2 months old that will forever be etched in my
memory. My sister in law Jackie joined me as these appointments can be
quite long. She was there for much needed support to keep me sane. The
appointment was unusually long. During the ECG the technician saw what
appeared to be fluid surrounding Drew’s lungs…. I remember vividly the
doctor asking if he had been sick, or anything unusual. He absolutely
wasn’t sick but as a precaution Drew was sent to get a chest x-ray. Once
we did the chest x-ray we went back into our room to wait. Later the
doctor came in to let us know that the preliminary results were negative for
plural effusion and pneumonia. She sent us on our way. It seemed to be a
lot of anxiety for nothing. <o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">While it was a
long and emotional appointment, I was glad to have my sister with me and we
left the hospital to go hang out with Jakester and my niece and nephew,
enjoying the last parts of summer vacation before I had to go back to work…I
can remember it like it was yesterday…. My phone rang while I was waiting in
the parking lot at Jewel while Jackie ran into grab a few things…. It was
Drew’s cardiologist. The words that came out next seemed like a bad
dream… She began to say that I don’t know how to say this but the preliminary
findings on Drew’s chest X-ray were incorrect. We believe that he has a
small plural effusion surrounding his lung and we need to admit him immediately
down to Lurie Children’s hospital. TIME STOOD STILL!!! I hung up
and the waterworks began like never before. I broke down in tears in
frustration and just pure anger that this went misdiagnosed… That my emotional
state was being tested yet once again…. When my sister in law came back to the
car, I don’t believe she knew what could have possibly happened. I was so
distraught and trying to explain to her that there is something seriously wrong
with my baby… WHY is this happening???? How could the radiologist miss
this??? It all didn’t add up and I was just so incredibly sad and felt so
defeated… I was crushed… <o:p></o:p></span></div>
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and went back to the hospital to be transported via ambulance down to a place
that I had only seen in a magazine, “Lurie Children’s hospital.” They had
opened these new doors a little over a month before the date that Drew was
admitted… It was July 24, 2012. It blows my mind on how my story
had just begun the minute that we were rushed into this place…..<o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">This place has
forever changed my family and I and has played an instrumental piece in this
puzzle I call life…. <o:p></o:p></span></div>
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<span style="font-size: x-small;"><span style="font-family: Cambria, serif;">DISCLAIMER:</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
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<span style="font-size: x-small;"><span style="font-family: Cambria, serif;"><br />
The article above was written by a guest blogger. The opinions and ideas
written belong solely to the guest blogger. Noonan Syndrome Foundation DOES NOT
endorse political candidates and religion or religious preferences.</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
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<span style="font-size: x-small;"><span style="font-family: Cambria, serif;">This blog
is provided for moral support purposes only. This blog is not a substitute in
any way for medical advice, diagnosis or treatment. Always seek the advice of
your physician or other qualified health provider with any questions you may
have regarding a medical condition. Never disregard professional medical advice
or delay in seeking it because of something you have learned from this blog.</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
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<span style="font-family: Cambria, serif;"><span style="font-size: x-small;">The
Foundation does not recommend or endorse any specific tests, treatments,
physicians, products, procedures, opinions or other information that may be
mentioned in this blog. Reliance on any information provided by the Foundation,
Foundation volunteers, staff or guest blogger/s is solely at your own risk. You
should not rely on information you receive from or through the blog for any personal,
medical or health decision, but should consult with a qualified professional
for specific information suited to your family member’s case.</span></span><span style="font-family: 'Times New Roman', serif; font-size: 13.5pt;"><o:p></o:p></span></div>
<!-- Blogger automated replacement: "https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F2.bp.blogspot.com%2F-GxAwNo0zPR4%2FUoefxbvZpAI%2FAAAAAAAAAT8%2FUrM32kR8G3E%2Fs320%2Fpic%2B2.jpg&container=blogger&gadget=a&rewriteMime=image%2F*" with "https://2.bp.blogspot.com/-GxAwNo0zPR4/UoefxbvZpAI/AAAAAAAAAT8/UrM32kR8G3E/s320/pic+2.jpg" -->Anonymoushttp://www.blogger.com/profile/03598548849284595605noreply@blogger.com0tag:blogger.com,1999:blog-3318413245516913889.post-84696320489733185362013-04-27T14:18:00.000-07:002014-03-12T05:53:26.488-07:00Cyndy Hartman--Struggles with Behavior Issues<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
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<span style="font-family: Cambria, serif; font-size: 12pt;">After my
husband and I were married our discussions were frequently about children and
how we would raise and discipline them. When we were out and about, we
would comment to each other on other peoples parenting styles and how their
children were behaving…good or bad. We had a clear cut image in our heads
of how we were going to parent and discipline our children and how they would
be model citizens and be courteous and well-behaved in public.<o:p></o:p></span></div>
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<a href="http://1.bp.blogspot.com/-1QDYLPOYQ3U/UxOt8Cv-e6I/AAAAAAAAAEs/h6te5DlQSkU/s1600/pic+1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-1QDYLPOYQ3U/UxOt8Cv-e6I/AAAAAAAAAEs/h6te5DlQSkU/s1600/pic+1.jpg" height="150" width="200" /></a><span style="font-family: Cambria, serif; font-size: 12pt;">That all
changed when we had our first son, Austin, in 1998. He was intelligent
and funny but he was also so energetic and defiant that it became difficult to
manage him. In the years since his birth he has been diagnosed with
Asperger’s Syndrome, Sensory Processing Disorder, ADHD, Anxiety, OCD and
Tourette’s syndrome. Our world became very different.<o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">In 2004, we
began another new and difficult journey as we had our second son, Blake.
It would not be until he was almost four years old and many health and behavior
issues later that we found out that he also had ADHD, OCD, Sensory Processing
Disorder and Tourette’s syndrome, however he also something called Noonan
Syndrome.<o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">Behavior issues
are very common with Noonan Syndrome and by the age of two, Blake’s behaviors
were out of control. We had high locks and chimes placed on all of our
doors as he became an escape artist. There was nothing worse than waking
up from a dead sleep to hear the front door chime at 6:00 am, knowing that it
was Blake opening the front door making a beeline for the street. The
majority of the time, he was able to make it all the way to the street before I
could catch up to him, which was terrifying. It was difficult to have my
boys run away from me in the store or to decide to have a melt down because I
told them they couldn’t have a toy. It was even harder to become the
epitome of the “bad parents” we had always discussed in our conversations of
how our children would not behave!<o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">The “normal”
world that we had envisioned pre-parenthood has now changed to a world of
experience, patience and understanding. We no longer pass judgment on
other parents because they may just have a child with behavior issues not bad
parenting. I can’t count the number of times I have had to leave
groceries in the store, have packages unsent, errands not finished because my
boys could not handle the sensory overload that day. I can’t count the number
of times that I have had one or both of my sons have a meltdown in the checkout
line and proceed to hit and kick me, bite me and call me names in front of
anyone that is willing to watch.<o:p></o:p></span></div>
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<a href="http://2.bp.blogspot.com/-xuXCiJOQSrw/UxOt8O8EnZI/AAAAAAAAAEw/J1KGGaSTAgo/s1600/pic+3.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-xuXCiJOQSrw/UxOt8O8EnZI/AAAAAAAAAEw/J1KGGaSTAgo/s1600/pic+3.jpg" height="200" width="150" /></a></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">Out of all the
mental health and medical issues that my son’s have, I would have to say that
the most difficult issue to deal with is the behavior issues that are
associated with Noonan Syndrome. We are currently going to be ordering
the fifth pair of eye glasses (in less than a year) for Blake because he has
broken all of his other pairs into pieces during melt downs. We always
have to find a fine balance with all of his medications and have to be careful
not to give them too early, too late, or forget to give them at all so that we
can try and avoid a meltdown. It’s hard to fathom that even after all of
these years, I have not gotten used to the glares, stares and comments from
other people because they do not understanding the situation and judge us as
parents. I do have to admit that I still get embarrassed at times because
of this too.<o:p></o:p></span></div>
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<a href="http://1.bp.blogspot.com/-R1Ia_6R_1j8/UxOt8HGq-yI/AAAAAAAAAE0/e3rsVQIy3sI/s1600/pic+2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://1.bp.blogspot.com/-R1Ia_6R_1j8/UxOt8HGq-yI/AAAAAAAAAE0/e3rsVQIy3sI/s1600/pic+2.jpg" height="200" width="150" /></a><span style="font-family: Cambria, serif; font-size: 12pt;">It is very stressful
to me as a parent to always be on guard, to get ready for the next behavior
issue that is coming and to prepare emotionally to go through yet another
meltdown without having one yourself. Somehow I manage (most of the time)
because I know they can’t help it and it is my job as their parent to do my
best for them. So I will do it over and over again, as long as they need
me to, because they are my children. I love who they are and despite all
of the ups and downs of the behaviors we deal with, I would not change anything
about either one of them.<o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">Cyndy has been
married to her husband doug for 17 years. She has two sons, Austin (15) and
Blake (9). She works full time but in her spare time she enjoys camping,
hiking, painting, arts and crafts, sewing and spending time with her
family.<o:p></o:p></span></div>
Anonymoushttp://www.blogger.com/profile/03598548849284595605noreply@blogger.com0tag:blogger.com,1999:blog-3318413245516913889.post-77480693326673117712013-04-01T14:15:00.000-07:002014-03-12T05:55:08.310-07:00Lynda Robinson -- Connor<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
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<a href="http://2.bp.blogspot.com/-52gGseZuiaU/UxOrbqxHndI/AAAAAAAAAEA/N-P9XnO5_U0/s1600/connor+pic+2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-52gGseZuiaU/UxOrbqxHndI/AAAAAAAAAEA/N-P9XnO5_U0/s1600/connor+pic+2.jpg" height="155" width="200" /></a><span lang="EN-GB" style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ansi-language: EN-GB; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"> I was
married to my husband for a few years and although our marriage was a stormy
one, we were taking care of our first born son Lee together. I had
suffered an ectopic pregnancy before getting pregnant with Lee. Dr’s weren't
sure if I would be able to have any children as I had lost one of my Fallopian
tubes and they could not tell whether my other tube was OK or not. We were
really lucky to have our first born miracle. Then when Lee was eight months old
I had a miscarriage. Just more stress to add to the already worrying Mum whose
biological clock was ticking as I was already 31 years old. I wanted so much to
have a sibling for Lee. On April fool’s day 1993 I found out that I was
pregnant, so I got my wish and I was over the moon. Pity my husband didn't feel
the same way. This only put more strain on our marriage and my husband caused
huge arguments about not being able to afford another baby. For the following
few months our marriage became really strained and my health wasn't good. I
worried about my unborn child and the thoughts that were going through my head
were not good. I was scared that I wouldn't be able to bond with my baby, but
for now I couldn't do anything but try and see if I could salvage what
was left of our marriage. I had to make a decision; after all I was responsible
for my baby boys’ happiness, my unborn child’s health, and also my own well
being. I was going to have the baby no matter what..</span><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span lang="EN-GB" style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ansi-language: EN-GB; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"> When I was four and a half months pregnant my husband woke up one
morning and told me that he just wanted to be a part time dad. I knew things
were bad but I never knew that he felt that way, and of course I only wanted
what was best for all concerned, so I agreed to the split and he began to pack
his bags. It was devastating to think that he didn't want to be a family any
more, but I wasn't going to beg him to stay. I needed to be sensible, so I told
myself that things were going to be alright-- after all my kids needed me. Life
had to go on. Life as a single parent was difficult and daunting but I was so
lucky that I had the support from my parents, sisters and a few good friends.</span><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<a href="http://1.bp.blogspot.com/-bJMITd9ySA4/UxOrbYnUKhI/AAAAAAAAAEQ/QVtXx-IAJk4/s1600/connor+pic+1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://1.bp.blogspot.com/-bJMITd9ySA4/UxOrbYnUKhI/AAAAAAAAAEQ/QVtXx-IAJk4/s1600/connor+pic+1.jpg" height="132" width="200" /></a></div>
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<span lang="EN-GB" style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ansi-language: EN-GB; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">The pregnancy had its ups and downs having recurring chest and kidney
infections --I seemed to be on antibiotics forever. Then late into the
pregnancy I was diagnosed with asthma and was given inhalers. At 7 and a half
months into the pregnancy, on one of my routine clinics, bloods were drawn.
The results:I had protein in my urine, my blood pressure was high and I
had the most horrible headaches. These were some signs of pre- eclampsia and my
consultant wanted me to be admitted ASAP. After my appointment I went home to
settle Lee with one of his aunts and collect my bag. I had no choice but to let
my family share the responsibility of my little man for a while as I didn't
know what lay ahead with the little one who was kicking inside me and causing
so much disruption. As the next few days passed I was becoming sicker. My head
was pounding and some tests were showing that my kidneys were not functioning
properly so I was sent to another hospital that had more up to date scanning
equipment. There detailed scans of my kidneys were carried out and it showed
that my baby was lying on them but they could not tell if there was going to be
any permanent damage. They also revealed that I was going to have a wee boy,
but for now I had to keep the surprise of gender to myself. As long as he
was healthy that was the main thing, or so I thought.</span><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span lang="EN-GB" style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ansi-language: EN-GB; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">On the morning rounds a Dr whom I had never met before told me that I
would be staying until my due date, which was 6 weeks away. Oh! Boy I was not a
happy bunny. No way, I couldn't believe what I was hearing. I called my Mum
with tears running down my face and talking through the sobs. She tried so hard
to calm me down but nope I was frustrated and angry, after all I could not eat
as there just wasn't room anymore. I was crunching ice cubes and I was in a lot
of pain. I couldn't even put a sheet over my legs as I was leaking fluid from
my pores when pressure was applied. While on the phone my consultant popped his
head round the corner and waved me over. He then asked me did I want to have my
baby in my arms tomorrow. Yes please I said, I was nervous but excited.</span><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<a href="http://4.bp.blogspot.com/-87Y1ZKmOjxo/UxOrcMfZ9AI/AAAAAAAAAEc/ZGx02SKcOnU/s1600/connor+pic+3.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-87Y1ZKmOjxo/UxOrcMfZ9AI/AAAAAAAAAEc/ZGx02SKcOnU/s1600/connor+pic+3.jpg" height="156" width="200" /></a><span lang="EN-GB" style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ansi-language: EN-GB; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">On the 26<sup>th</sup> October 1993 my labour was induced. My water
broke . I was advised to have an epidural as my blood pressure was high and
they would be able to have more control over it. My labour lasted 6hrs 13
minutes and at last my second miracle entered the world. My Mum was with me
every step of the way and we both got such a shock when we looked at my baby
boy. He was blue, filled with fluid and was struggling to breathe. In fact he
looked just like his last scan photo that was taken only a week before. After a
quick cuddle he was whisked away so that the staff could clear his airways. I
didn't hear him cry so I knew that things weren't good and I began to worry. A
few minutes later they asked me if he had a name yet before taking him to SCBU.
I named him Connor John Robinson. He weighed 7lbs 3ozs which was remarkable for
being six weeks early. My Mum went with him to SCBU and on her return I
must have scared the living daylights out of her as I had my very first asthma
attack as she walked through the door. Staffs were good and managed to control
my attack, but I had lost about four units of blood so I needed a blood
transfusion and had to stay in intensive care. I couldn't believe that he had
arrived and I was one happy and proud Mummy. During the night a Pediatric Dr
came to tell me that Connor had been moved to Intensive care and was in an
incubator and that he was being given fluids and antibiotics through an IV
drip. </span><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<b><span lang="EN-GB" style="font-family: Cambria, serif; font-size: 12pt;">Diagnosis</span></b><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<a href="http://2.bp.blogspot.com/-lcEEvA7nX7k/UxOra4P2wiI/AAAAAAAAAD8/28WS5qG2xOw/s1600/connor+04.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://2.bp.blogspot.com/-lcEEvA7nX7k/UxOra4P2wiI/AAAAAAAAAD8/28WS5qG2xOw/s1600/connor+04.jpg" height="200" width="164" /></a><span lang="EN-GB" style="font-family: Cambria, serif; font-size: 12pt;">At 17mths Connor got a clinical diagnosis
of NS. I wasn’t sure how I felt as I had watched my wee man go through some
horrific tests, but now at least he had a name to his difficulties, maybe I
could plan for our future. After all I had been blessed with two beautiful
miracles and I knew that my life had been changed for ever. Raising my two
special boys was difficult but I was up for the challenge. My emotions were
flying high but every little achievement that my boys made let me see how
blessed I was and that the hard work and sacrifice was well worth it. Our
schedule was hectic as Connor seemed to have lots of different hospital and
therapist appointments, not to mention visits from health visitors or nurses. I
had never felt so isolated and I had thought the worst about whether my baby
boy would be with us for long, I couldn’t stop worrying about what the future
held for my boy but for now all I could do was take one day at a time and thank
God for every precious moment that I spent with Connor. Life with my boys
was busy but I took things in my stride. There were times that I wanted to have
a little bit of my life back and just as I thought it would happen Connor would
be referred to another clinic. More appointments and time spent worrying about
upcoming surgeries, not something that I was comfortable with but could not
escape. For now I had to pray and hope that the surgery went well. His bowel
was the first op, my poor baby was always constipated and it broke my heart to
watch him squirming and screaming in pain when he needed to go. He was on Senna
and Lactulose but they didn’t seem to work and Connor would only have a bm
every three weeks so he was having an anal stretch done. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<b><span style="font-family: Cambria, serif; font-size: 12pt;">Connors Journey</span></b><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-GB" style="font-family: Cambria, serif; font-size: 12pt;">Mum and Dad invited the three of us to
stay with them until I got on my feet and because it was just a few weeks until
Christmas, they didn’t want me to be on my own. My baby boy was losing
weight fast and was projectile vomiting after every feed. He slept through
feeds and I was getting really worried. Then one day as I looked at his legs,
from the knee down to his toes were a very deep purple, by luck we had an
appointment with his Paediatric consultant later that day. I was told that he
would need a cauterization done to see what was going on with his heart, news that
I wasn’t prepared for. It was scheduled for the following week at
Yorkhill hospital. The day of his surgery came and all sorts of thoughts were
going through my head. As I carried him into the Operating Theatre and kissed
him before putting his life in the surgeon’s hands, my emotions were all over
the place and I thought the worst. Little did I know that our journey had only
begun?</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-GB" style="font-family: Cambria, serif; font-size: 12pt;"> I waited anxiously for my wee
miracle to return to the ward. The relief that I felt when I saw him being
wheeled towards me down the corridor. Again he looked so helpless attached to
wires and monitors. My baby had pulmonary valve stenosis an ASD and a VSD. He
would need heart surgery before the age of 4. For now he would be monitored
closely by the cardiologist, but his valve had been stretched to allow his
heart to function better.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-GB" style="font-family: Cambria, serif; font-size: 12pt;">Connor’s first year was a difficult one.
He didn't meet any of his milestones on time and his immune system was so low
that he seemed always to have an infection or virus. He was still being tube
fed and wouldn't tolerate solid food at all. He would gag at the thought of
solids. Vomiting was a huge problem and he was still losing weight. He was
diagnosed as failure to thrive but still no one knew why. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<b><span style="font-family: Cambria, serif; font-size: 12pt;">Going Home</span></b><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-GB" style="font-family: Cambria, serif; font-size: 12pt;">I learned to replace his NG tube which I
grew to hate and stayed in the family room to take over his care full time. While
I was there an eye specialist came to see Connor. He did explain what he would
be doing to his eyes and gave me the option to leave the room or stay, I chose
to stay. He proceeded to place a clamp on my baby’s eye, it wasn’t nice to
watch or hear as my wee lamb was screaming. Dr G was checking for bleeds as
Connor had blown blood vessels in both eyes and they didn’t look like they were
getting any better. The tests were over and he was given the all clear to go
home. I was excited at the prospect of being home and being Mum to both
miracles, but for now I had to stay another night and after all he had been
there for seven weeks and they wanted to make sure I could cope.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<b><span style="font-family: Cambria, serif; font-size: 12pt;">Mystery</span></b><span style="font-family: Cambria, serif; font-size: 12pt;"> <o:p></o:p></span></div>
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<span lang="EN-GB" style="font-family: Cambria, serif; font-size: 12pt;">The following day I couldn’t wait to see
my baby boy but it wasn’t good news as I stood there watching the monitors,
beeping of the alarms, and the needles and tubes that were in my wee man’s
hand? The good news was that he was breathing his own air. I dreaded going to
SCBU as there seemed to be something else that was going wrong with my precious
baby boy. The consultant that was dealing with Connor had come to tell me that
he had a heart murmur but that hopefully it was just because he was premature
and that it would resolve its self. As the days passed he was not getting any
better. He had a large liver, kidney and spleen. He was being fed by a NG tube,
and he would no sooner be fed when he would vomit. Dr’s weren’t sure what was
going on with him and many tests were carried out. He was low on potassium and
needed a supplement. He wasn’t making any improvement and on many occasions he
gave everyone a fright. As I walked into SCBU the nurse that had been looking
after Connor came to give me the usual update. Looking at his chart there seemed
to be a lot written. The nurse had told me that through the night Connor had
stopped breathing many times and that he was having sleep apnoea. They couldn’t
say for sure what was going on but had noticed that his liver was measuring
6cms when it shouldn’t have measured anything at all and that they wanted to do
a liver biopsy. I was devastated and all sorts of thoughts were going through
my mind, was he going to die? He certainly had all the Dr’s baffled and for
three weeks after all negative tests results had returned. I said to his
consultant that I wanted my baby boy to be moved to Children’s Yorkhill
Hospital in Glasgow.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<a href="http://2.bp.blogspot.com/-o8yelyQ32hQ/UxOraU7KyRI/AAAAAAAAADs/AO95weNjgcc/s1600/Connor+05.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-o8yelyQ32hQ/UxOraU7KyRI/AAAAAAAAADs/AO95weNjgcc/s1600/Connor+05.jpg" height="200" width="171" /></a><span lang="EN-GB" style="font-family: Cambria, serif; font-size: 12pt;"> It was arranged for us both to go to
Yorkhill the next day. We were there for a week during which scans and x rays
were carried out on his liver, heart and kidney. His heart had two holes in it
and his pulmonary valve was thick. His liver and left kidney was still
enlarged. He had a visit from one of the leading geneticists Dr
Stevenson. He and his colleagues examined Connor closely but he didn’t talk to
me and I could feel myself becoming really anxious, I wanted so much to know
what was going on with my baby. The next day as I was preparing to get ready
for the move back to our local maternity hospital, a young Dr came to have a chat
with me. She started to tell me about what they had found, my stomach was doing
somersaults and then I heard Noonan Syndrome and that it was the next one to
Down syndrome. I had never heard of it. She began by telling me that he has all
the clinical signs which consist of low set ears, rotated ear lobes, eyes too
far apart, wide spaced nipples, a concave breastbone, heart problem, eating
problem, large liver and kidney. As she spoke I wanted so much to cry and I had
so many questions but couldn’t find the words to say. I couldn’t take it in and
oh! How I needed my Mum right now.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-GB" style="font-family: Cambria, serif; font-size: 12pt;">Being with Connor had been good after all
he only had me to support him. His dad didn’t want to know and to be honest he
wouldn’t have been any support to me. My emotions were all over the place and I
was missing my 1<sup>st</sup> born miracle Lee. I couldn’t even be with
him on his 2<sup>nd</sup> birthday and it was tearing me apart. There
wasn’t any clear date of when I was getting my baby home for good so for now I
would just have to be patient. I have learned to be more patient over time.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-GB" style="font-family: Cambria, serif; font-size: 12pt;"> We arrived back at our local
hospital and Connor was settled back into SCBU. I had been discharged so I went
to stay with my parents as they were looking after Lee. Oh! I had missed him so
much and I needed to bridge the bond that I felt had been split. I visited
Connor every day to take over his care for the next few weeks. He was still
being fed by a NG tube and one day when I walked in I was asked did I want to
take my baby boy home but in order to do so I had to learn to replace his tube.
I was told to take him home, love him as they were not expecting him to see his
first birthday. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<a href="http://3.bp.blogspot.com/-3sUWWvGsipU/UxOrbCyqEdI/AAAAAAAAAEY/9foIwXio5dg/s1600/connor+06.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-3sUWWvGsipU/UxOrbCyqEdI/AAAAAAAAAEY/9foIwXio5dg/s1600/connor+06.jpg" height="200" width="158" /></a><span lang="EN-GB" style="font-family: Cambria, serif; font-size: 12pt;">Connor has had 16 surgeries over the
years. He had four eye ops because he had squints in both eyes and his surgeon
didn’t know which muscles were responsible for controlling the movement of his
eyes. He has had four Botox injections into the left eye as surgery was no
longer an option. He has astigmatism so wears glasses. At age 4 he had a hernia
and testis- repair done, he went on to have his tonsils out and a few sinus
flushes because of the recurring throat and sinuses infections. At age 14 he
had to have 7 teeth removed because of overcrowding and because he didn’t want
to wear braces. His last surgery was when he was 18, though he hadn’t been well
for a long time. He was constantly complaining that his tummy was hurting and
he would vomit continually. Many times the GP would fob him off by telling him
that he had a bug. He couldn’t stand it any longer and he got very sick, so bad
that he had to be taken to hospital by ambulance. He was in hospital put on an
IV as he couldn’t hold even a sip of water down. Scans were carried out and
they showed that he had an inflamed gallbladder and some stones, but they could
not operate until the inflammation and infection had gone. He stayed in
hospital for a week and was sent home with strong a pain reliever until his
surgery was scheduled. On the 23<sup>rd</sup> December 2011 we got a call
to say that there was a cancellation for surgery and asked was he able to go
in? </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-GB" style="font-family: Cambria, serif; font-size: 12pt;">There was a complication with his
gallbladder surgery though we were never told exactly what it was but it was
worrying to think that something was not right. Connor was allowed home on
Christmas Eve but I wasn’t sure that he was ready. He still hadn’t passed any
urine and was in an awful lot of pain. Early on Christmas morning he had to be
readmitted to have a catheter inserted. His bladder had went into shock and it
would take some time to get back to normal so until then he would have to stay
in hospital. He wasn’t happy as he didn’t get to have Christmas dinner. It was
never easy to watch my baby in so much pain for whatever the reason and Connor
has had his fair share of struggles but he has always got there with help and
support from all that is involved in his life. He has always got there in his
own time.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-GB" style="font-family: Cambria, serif; font-size: 12pt;">Connor has checked out ptosis surgery but
has decided no more surgery as it involves transplanting bone from his thigh to
transplant onto his cheek bones as his are flat. He’s had enough and unless
it’s life threatening then wants to be left alone. He still struggles every day
but he is my brave soldier, I admire how strong and courageous he has been and
I wouldn’t change him for the world.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-GB" style="font-family: Cambria, serif; font-size: 12pt;">Connor suffers with so many conditions
that affect him on a daily basis. He has contractures of both elbows that seem
to be getting worse over time. He has scoliosis in his spine and his muscles in
his legs have become so tight that he is in constant pain. He is very sensitive
to so many meds that he now has to use a pain patch. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<a href="http://1.bp.blogspot.com/-kwJabt5RRA8/UxOraeNFRhI/AAAAAAAAAD4/XhVKJ4ae5QE/s1600/Connor+08.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://1.bp.blogspot.com/-kwJabt5RRA8/UxOraeNFRhI/AAAAAAAAAD4/XhVKJ4ae5QE/s1600/Connor+08.jpg" height="188" width="200" /></a><span lang="EN-GB" style="font-family: Cambria, serif; font-size: 12pt;">When I was first told that he wouldn’t see
his 1<sup>st</sup> Birthday I told myself that I would love him, fight and
support him every minute that God blessed me with him. That was 19 years ago.
Connor struggled through mainstream school despite the support that I had
fought so hard for already being in place. His High school didn’t honour his
statement or IEP. Connor was bullied at school so he developed low self-esteem.
He has spent years on and off seeing a clinical psychologist and doing CBT. He
did have a lot of time off school because of all the hospital, Dr and therapist
appointments. When he was 9yrs old things got so bad at his first Primary
school that I had no other option but to move him to another primary to
continue his education in mainstream school. He came on leaps and bounds, the
classes were smaller and the classroom was a closed class which was a lot
better, fewer distractions. I wasn’t sure how he would cope at High School but
I was determined to make sure that he would get all the help and support that
he needed. Despite Connor having dyslexia and Mearse Irlin syndrome, it didn’t
stop him though; he passed all of his exams and went on to do Business at
college. He has just completed his HNC in Business this year and will graduate
at the end of this year.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<a href="http://1.bp.blogspot.com/-IjhHMcCL4is/UxOraSafT3I/AAAAAAAAAD0/Gp2KtOXU2GA/s1600/Connor+07.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-IjhHMcCL4is/UxOraSafT3I/AAAAAAAAAD0/Gp2KtOXU2GA/s1600/Connor+07.jpg" height="200" width="171" /></a></div>
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<span lang="EN-GB" style="font-family: Cambria, serif; font-size: 12pt;">
Just when we thought Connor was finished being diagnosed he was given a
diagnosis of ADHD, Absence Seizures and his gene mutation was identified as NS
SOS1 gene. Connor’s health hadn’t been good so we had an appointment again with
Dr T the geneticist and he was given another diagnosis of Cardio facio
cutaneous (CFC) syndrome. It was like fitting all the pieces of the puzzle
together and we began to understand why Connor had all the unusual things wrong
with him, but it didn’t matter for me as we had always lived one day at a time.
He has taught me so much through the years and I am so proud to be his Mum.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-GB" style="font-family: Cambria, serif; font-size: 12pt;"> He has overcome
so many obstacles in his life but has always been determined to do and succeed
in whatever he puts his mind to. Who would ever have thought that he would defy
all odds and achieve so much? I used to worry about his future and what it
would hold for him but he is just like any other teenager trying to do what
teenagers do and I do believe he has been given life for a reason.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-GB" style="font-family: Cambria, serif; font-size: 12pt;">Raising my boys has been a difficult
journey and I have got to meet so many lovely people. It has made me appreciate
not only our close family but also our extended family.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-GB" style="font-family: Cambria, serif; font-size: 12pt;"><br />
<br />
<br />
</span><b><i><span lang="EN-GB" style="color: #134f5c; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ansi-language: EN-GB; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">AUTHOR</span></i></b><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<br /></div>
<br />
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<span style="background: white; color: #333333; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Lynda lives in Scotland. Lynda is a full time caregiver to her son,
Connor and her older son Lee who was diagnosed with Schizoaffective Disorder at
the age of 15. Lynda says she keeps her sanity by studying at a college or
adult community centre, performing voluntary work. She likes to spend her free
time drawing, painting or writing poetry. She has had two of her poems
published. Lynda remarks, “I have survived I think because I have a very
close knit family and they have always supported me through the difficult
times. They are my rock.” Because of this her boys have a close knit
relationship with their grandparents.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-size: x-small;"><span style="font-family: Cambria, serif;">DISCLAIMER:</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
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<span style="font-size: x-small;"><span style="font-family: Cambria, serif;"><br />
The article above was written by a guest blogger. The opinions and ideas
written belong solely to the guest blogger. Noonan Syndrome Foundation DOES NOT
endorse political candidates and religion or religious preferences.</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
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<span style="font-size: x-small;"><span style="font-family: Cambria, serif;">This blog
is provided for moral support purposes only. This blog is not a substitute in
any way for medical advice, diagnosis or treatment. Always seek the advice of
your physician or other qualified health provider with any questions you may
have regarding a medical condition. Never disregard professional medical advice
or delay in seeking it because of something you have learned from this blog.</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
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</span></span></div>
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<span style="font-family: Cambria, serif;"><span style="font-size: x-small;">The
Foundation does not recommend or endorse any specific tests, treatments,
physicians, products, procedures, opinions or other information that may be
mentioned in this blog. Reliance on any information provided by the Foundation,
Foundation volunteers, staff or guest blogger/s is solely at your own risk. You
should not rely on information you receive from or through the blog for any personal,
medical or health decision, but should consult with a qualified professional
for specific information suited to your family member’s case.</span></span><span style="font-family: 'Times New Roman', serif; font-size: 13.5pt;"><o:p></o:p></span></div>
<!-- Blogger automated replacement: "https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F1.bp.blogspot.com%2F-h3a6KLbQzJk%2FUgp3N0LsUnI%2FAAAAAAAAARU%2FKyI5rniT2uI%2Fs320%2FConnor%2B05.jpg&container=blogger&gadget=a&rewriteMime=image%2F*" with "https://1.bp.blogspot.com/-h3a6KLbQzJk/Ugp3N0LsUnI/AAAAAAAAARU/KyI5rniT2uI/s320/Connor+05.jpg" -->Anonymoushttp://www.blogger.com/profile/03598548849284595605noreply@blogger.com0tag:blogger.com,1999:blog-3318413245516913889.post-53256961250278191322013-03-01T14:00:00.000-08:002014-03-12T09:07:17.041-07:00Cari Jack--Baby Judah<br />
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<b><i><span style="color: #0b5394; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Lessons I learned from God, my husband Brian, my daughter Blair
and my son, Judah</span></i></b><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<i><span style="font-family: Cambria, serif; font-size: 12pt;">Usually
you learn life lessons at the end of a story. I am going to tell you what
I learned from the very beginning.</span></i><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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When I found out I was pregnant with our second child, I was a little
shocked. We had planned on trying after we got home from our Las Vegas
trip for a friend’s wedding but instead, a week before we were to leave, I got
the positive sign. It took a little over a year to get pregnant with our
first child so naturally we didn’t think that the second one would happen so
easily. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<b><i><span style="font-family: Cambria, serif; font-size: 12pt;">Life
lesson #1: Things always happen when you least expect them to.</span></i></b><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<a href="http://4.bp.blogspot.com/-cdByViaFZG8/UxOpdNrBaXI/AAAAAAAAADI/DCzrdgCKp5Q/s1600/carjackpick2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-cdByViaFZG8/UxOpdNrBaXI/AAAAAAAAADI/DCzrdgCKp5Q/s1600/carjackpick2.jpg" height="152" width="200" /></a><span style="font-family: Cambria, serif; font-size: 12pt;">
Things were going along as they did in my first pregnancy, I was sick as a
dog. Although it seemed a lot worse this time, I was not able to function
as well as before. I didn’t really think too much of it other than I was
just not made to handle pregnancy well which was quite the disappointment
because for the most part, I loved being pregnant. My husband, Brian, was
a full-time student in seminary going for his Masters of Divinity degree and
our 2 ½ year old daughter, Blair Lillian, was quite the handful. Since I
was so sick, most of the responsibilities fell to Brian. Dinner, school,
cleaning, parenting. He was my savior during that time, and often still
is.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<b><i><span style="font-family: Cambria, serif; font-size: 12pt;">Life
lesson #2: God will bring you true love if you let Him.</span></i></b><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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When we went in for our 20 week ultrasound I was so excited. Would it be
a boy or a girl? As we looked on the screen, it couldn't have
been more obvious. If we didn't want to know it got spoiled
right then and there. I looked at Brian with a gleam in my eye and got
one in return. We explained to Blair what we were looking at but I don’t
think at that age she had the full understanding. She was excited to have
a baby brother, or at least, she thought she was.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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When I went in for my next checkup that is when the ball dropped. There
was fluid on the baby’s lungs. They had caught it on the
ultrasound. They didn't explain to me very well what exactly
that meant other than I was going to need an ultrasound every week from there
on out. I had a different doctor that day as my regular was on maternity
leave but soon to return. I was worried but felt that the doctors had it
all under control. It wasn't until my doctor returned that I
knew what exactly this all meant. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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I had to go to this appointment by myself as Brian had other commitments.
I figured it would be fine. When I got to the office and they called me
back to the exam room, my doctor came in with a worried look on her face.
She asked if the substitute doctor had explained the situation to me. I
had told her that the baby had fluid on his lungs and they wanted to do weekly
ultrasounds to keep an eye on it. She looked at me with those dark brown
eyes and said, “Cari, in these situations, sometimes the babies don’t make
it.” I was instantly terrified and angry that I had been there alone that
day.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<b><span style="font-family: Cambria, serif; font-size: 12pt;">Life
lesson #3:</span></b><span style="font-family: Cambria, serif; font-size: 12pt;"> <b><i>Never
go to any doctor’s appointment alone, even if you think it is routine.</i></b></span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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On my way home, crying hysterically, I called Brian and relayed the
message. He could barely understand what I was talking about through my
sobbing. When I got home, we embraced, cried, talked, cried more, and
decided on two things. One, we would get through this as a family.
All three of us. And we were going to love that baby no matter what
happened. And two, that we were going to pray about it, hard.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">The weeks went by, going in
for my ultrasounds regularly. In the meantime we were trying to decide on
a name. This is harder than it may seem. My husband and I could
never agree on anything when it came to our daughter so I knew this would take
some time! So, we decided that we would both come up with one that we
liked and wait and see when the little guy came out which one fit the
best. We had decided when we were expecting with our daughter that we
were going to stay away from the “J” names as I didn’t want anyone calling him
“JJ” since our last name is Jack. So naturally, I heard a
name on TV that I instantly fell in love with, Judah. Going through my
baby name book I also came upon Reece. And thus became Judah Reece.
I now had to decide how to tell my husband that I wanted to name our baby a “J”
name. He laughed at me as always and told me the name he had picked out,
Lane Ezra. As we both liked our respective names, now it was just a
waiting game.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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As the time got closer to my due date, which was January 19<sup>th</sup>, the
more complications arose. I was getting huge. Like gigantic.
I couldn't walk, sleep, or breathe without pain. This was
definitely different than my first pregnancy! The doctors told me that
since the baby had fluid on his lungs, he couldn't cycle the amniotic
fluid correctly which meant that it just kept building up. And building
up it did. December came rolling around and the doctors had a plan of
doing an amniocentesis on the 21<sup>st</sup> and depending on if the baby
was ready, scheduling a c-section for Christmas Day. That sounded like a
great plan as I was definitely ready to have this baby out of me as quick as
possible with as little complications as we could muster. He had other
plans though. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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On December 10<sup>th</sup> Brian’s middle brother, his wife and their two
children came to visit as we had plans to go to a family Christmas the next
day. But the next morning we could see that nobody was going
anywhere. The meteorologists predicted that we would be getting 10 inches
of snow that day. We ended up getting 14-16 inches.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<b><span style="font-family: Cambria, serif; font-size: 12pt;">Life
lesson #4: <i>Meteorologists have one of the hardest jobs in my
opinion, and more often than not, they just don’t get it right.</i></span></b><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<a href="http://3.bp.blogspot.com/-cdByViaFZG8/UxOpdNrBaXI/AAAAAAAAADU/39Dnjcj_xnc/s1600/carjackpick2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-cdByViaFZG8/UxOpdNrBaXI/AAAAAAAAADU/39Dnjcj_xnc/s1600/carjackpick2.jpg" height="152" width="200" /></a></div>
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The roads were not good for travel and we were stuck inside. Since we had
time on our hands, my brother- in- law, Shawn, asked if I could give him a
haircut. I had been attending cosmetology school before I got pregnant
but had to take a leave of absence due to all the complications. It ended
up being the longest haircut that I have ever given anyone. I kept having
to sit down because of back pain. It got to be so bad that finally my
sister-in-law, Vanessa, decided to start timing how often I sat down and how
long it lasted. I can honestly say that labor didn’t even cross my
mind. Why would I be going in to labor over a month early and in the
middle of a blizzard? </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<b><span style="font-family: Cambria, serif; font-size: 12pt;">Life
lesson #5: <i>Even though you are a woman, you can’t always tell
what is going on with your body and that is ok to admit And refer
back to lesson #1: things always happen when you least expect them
to. Always.</i></span></b><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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We decided to call the doctor’s office to see what I was supposed to do.
Pretty much they told me that if I thought I needed to come in we could try to
get there but all they would be able to do if I got there was try to stop the
labor. After seeing cars stuck in the parking lot outside of our
apartment building, I decided to wait it out. Luckily I got to sleep that
night and only two contractions woke me up. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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The next day, the roads were clearer and we decided to go in to the hospital
while we had family there to watch over our daughter, Blair. Once we got
there, they tried to stop the labor to no avail. I will never forget the
look on my doctor’s face when he came waltzing into my tiny room. “This
isn’t what we had planned, “he said with that stern look on his face. I
just told him that I just really didn’t want to do that amniocentesis because
quite frankly, that freaks me out! </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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They took me back to surgery and with my husband by my side, we waited to hear
that oh so important cry. It took quite a while to get him out however
because of all the fluid, the assisting doctor said she thinks I broke a record
for all of her deliveries to date! Finally, I heard a sound. It
wasn’t really a cry, more like a “meow”. The baby was also retaining much
fluid and at 34 weeks he weighed in at 6 lbs. 1 oz. They were able to
drain the fluid off of his lungs right away with a syringe. I was going
to be in surgery for a while yet as this was my second c-section and they go
through and check for excessive scar tissue. I sent Brian with the baby
to make sure he was fine and to figure out what his name was. When I got
into recovery, Brian was waiting for me. The baby was doing ok, they were
getting him hooked up in the NICU. I asked Brian what his name was going
to be. He said, “He definitely looks like a Judah.” On December 12,
2010 at 8:04 pm we welcomed Judah Reece Jack into the world.<span style="background: white;"> </span></span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">He was the second most
perfect thing I have ever laid my eyes on. Contrary to other newborns in
the NICU, Judah was huge. With all of the fluid he was retaining he
couldn’t even open his eyes. He also couldn’t breathe on his own so he was
intubated right away. Judah had all kinds of tubes and wires coming out
of him, it was so overwhelming. Having just had a baby, seeing him like
that and not really knowing what was going on, I couldn’t hold it
together. I stared and cried. I asked the nurses what his risk was
like. I didn’t know if this was all standard procedure or if we were
about to lose him. They told me it was all precautionary but couldn’t
tell me whether or not he would be all right. We just decided to stand by
him as long as we could, try to get some rest and let the doctors and nurses do
their jobs.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<b><span style="font-family: Cambria, serif; font-size: 12pt;">Live
lesson #6: <i>You will surprise yourself at how strong you can be in
certain situations.</i></span></b><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">
The NICU experience is a whole different world. All of the sounds, the people
moving in and out, the overwhelming sight of your struggling baby, the medical
terms being thrown at you and trying to keep them all straight in a sleep
deprived state of mind. But the very great thing is the nursing
staff. We were blessed with some of the best NICU nurses in the
world. Without them I don’t think we would have made it through.
That next week was strange, trying to see if Judah would be able to breathe on
his own, pumping and freezing my breast milk for when he no longer had to be
intubated, learning all of the medical terms, watching them give him multiple
medications to relieve the fluid build- up he had retained, remembering to wash
your hands and arms every time you wanted to get remotely close to your own
baby, learning how to change the smallest diapers I have ever seen and getting
peed on every single time, and that is no exaggeration. I got peed on
every single time! We had many friends and family come in to see
him. But the most important person we wanted to be there couldn’t
be. Since it was December and the middle of cold/flu season, Blair was
not allowed to enter the NICU. Anyone under the age of five was not able
to enter because of their germy little beings. We tried to explain to her
what was going on and show her pictures of Judah, but at age three it didn’t
really come together for her.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">
Judah was finally put on a c-pap machine for breathing, which meant he didn’t
have to be intubated anymore. We were constantly watching his oxygen
levels to make sure they didn’t go down. They had taken it out once and
had to put it back in because his levels were too low. He had a feeding
tube going down his throat, the c-pap machine, goggles because he was a little
jaundice, wires going into his bellybutton, a pic line, an IV and a heart
monitor. We would try to make light of it and when he had his whole getup
on we would say he looked like a fighter pilot. This was when I had
learned the significance of Judah’s name. As I had mentioned before, my
husband was attending seminary to become a Lutheran pastor. What I didn’t
know at that the name Judah comes from the fourth son of Jacob and this is the
ancestral line of King David and Jesus. Jesus was called the Lion of
Judah as the savior of God’s people. This gave us hope that God was
watching over our little Judah and our family. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">
Finally the day came; they were opening up one weekend for children five and
under to visit the NICU. We had anticipated this day, the day when the
big sister could finally meet the little brother. It was and still is one
of the happiest days of my life. I can’t even put into words the
experience that we had- so you will have to watch for yourself </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<b><span style="font-family: Cambria, serif; font-size: 12pt;">
Life lesson #7:</span></b><span style="font-family: Cambria, serif; font-size: 12pt;"> <b><i> Children
really are God’s miracles and I was blessed immensely with the ones I got to
mother.</i></b></span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<a href="http://4.bp.blogspot.com/-XfQ6eLMvOaI/UxOpdBhFAHI/AAAAAAAAADY/ZVgB12XpKJc/s1600/CariJackPic1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-XfQ6eLMvOaI/UxOpdBhFAHI/AAAAAAAAADY/ZVgB12XpKJc/s1600/CariJackPic1.jpg" height="150" width="200" /></a><b><i><span style="font-family: Cambria, serif; font-size: 12pt;">And
thus became the inseparable duo of Blair Lillian and Judah Reece. </span></i></b><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">It’s funny where life takes
you sometimes. I never had imagined what it was like having a baby in the
NICU. I don’t know how parents do it when their babies have to stay there
for an extended period of time. Mid-January we got a visit from a
geneticist. She was explaining that she wanted to send in a blood test
for Judah. She said that she noticed a few things about him that pointed
to something called Noonan Syndrome. As she stood there pointing out all
of the physical “abnormalities” about our perfect to us newborn, I was in a
state of shock. How could someone be so insensitive to a couple of
parents trying to figure out why our baby couldn’t come home, what to do with a
toddler while trying to be at the hospital, and trying to do school work and a
job on top of that! If I could ever be capable of hating someone, she was
on the top of my list. She continued to tell us that the test results
would take two months to come back, maybe longer and that if it came back
negative, that didn’t necessarily mean that Judah didn’t have Noonan Syndrome
and that they would probably still treat him as if he did. We agreed to
the test but were still so confused. Everything was a blur for the next
couple of months. We decided not to tell anyone about the test until we
knew something for sure. Why stress everyone else out when it wasn’t
necessary. So we held it all on ourselves.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<b><span style="font-family: Cambria, serif; font-size: 12pt;">Life
lesson #8: <i>Don’t ever hold something that important to
yourself. Ask for help and guidance when needed. We are only human
believe it or not.</i></span></b><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">
I can’t speak for Brian, but I couldn’t take it. I am not a patient
person to begin with so this was killing me. What did they mean that even
if the test came back negative that didn’t mean Judah didn’t have it?
Would they really treat him for something that he didn’t have? What if it
came back positive? What did that mean exactly? What were we
supposed to do from there? So many questions. I knew if I didn’t
focus on something else, this would eat me alive. So, we focused on
getting Judah to eat and get home. Well, we got one accomplished
anyway. Judah ended up getting a Gastrostomy Tube (g-tube) placement at
the end of January. We learned how to care for that, he was breathing on
his own, we had his reflux issues somewhat controlled, so we were able to bring
him home the second week in February. This means we spent about two
months in the NICU. Blair was bounced from apartment to apartment in the
seminary family housing with volunteers to watch her while we were at the
hospital with Judah. If it wasn’t for all of those people, we would not
have survived that two months as well as we did.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<b><span style="font-family: Cambria, serif; font-size: 12pt;">Life
lesson #9: <i>God will surround you with great people, if you let
Him. And refer back to Life Lesson #1.</i></span></b><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">
Life at home was crazy as you could about imagine. Working on trying to
get him to eat on his own and failing most of the time and then what he did eat
he just threw back up. Going through the motions and taking him to so many
doctors’ appointments I had lost count. After being in the NICU for so
long Judah developed torticollis and couldn’t move his head to the left and
thus didn’t really move his left side at all since he couldn’t see it. We
started going to physical therapy for that as well as a chiropractor. We
were getting in-home care for occupational therapy and a nurse came once a week
to check on him. We were seeing a cardiologist because they found that
Judah had a mild pulmonary stenosis. We were seeing the surgeon for
check-ups, a gastroenterologist for his g-tube and nutrition, his pediatrician
regularly, the geneticist wanted to keep an eye on him as well. And I
probably have forgotten some by now. March finally came and we got the
call. Judah’s blood test came back positive for Noonan Syndrome on the
PTPN11 gene. I never realized how relieved I would be when I heard the
news. Although I was sad that this had happened to my baby, I was glad
they knew what it was so they could treat him correctly. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">
I didn’t know until we joined the Noonan Syndrome Support Group how lucky we
were to have a diagnosis. There are many families out there that
don’t. We told our families and told them that we didn’t really know what
this meant for Judah, and we still don’t. We just take day by day and are
grateful for the progress that he has made.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;">
Judah is now 2 ½ years old and is doing wonderful. We are three months in
for not having used his g-tube and are waiting to hear when he can get it
removed. He has been attending the Spokane Guild School in Washington
State and receiving physical, occupational, and speech therapies. We have
found out that he not only has a mild pulmonary stenosis but an atrial septal
defect (ASD) as well. We are seen regularly by the cardiologist,
ophthalmologist, pediatrician, orthopedist, nutritionist and
endocrinologist. We have not, as of yet, decided to put him on growth
hormones but is being monitored to see if this is something that will be a part
of his future. Judah has grown tremendously just in the last several
months; we are amazed at his progress. We are proud parents to have such
a smart, loving, funny, playful little man. And he has the best big
sister in the world who teaches him something new every day.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<b><span style="font-family: Cambria, serif; font-size: 12pt;">Life
lesson #10: <i>Every day and every one is a miracle, no matter who
they are.</i></span></b><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: Cambria, serif; font-size: 12pt;"> We can’t wait to see
what kind of a man Judah matures into and will be ready for any challenges that
might come along. We know that God is with us and are grateful for the
support we get from family, friends, and the support groups we are a part of
online. Thank you so much for the Rasopathies foundation, the Noonan
Syndrome support group, and to all the families that participate and lend
advice and prayers. We are forever blessed. ~ The Jacks</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span><br />
<span style="font-family: Cambria, serif; font-size: 12pt;"><br /></span>
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<br />
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<span style="font-size: x-small;"><span style="font-family: Cambria, serif;">DISCLAIMER:</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
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<span style="font-size: x-small;"><span style="font-family: Cambria, serif;"><br />
The article above was written by a guest blogger. The opinions and ideas
written belong solely to the guest blogger. Noonan Syndrome Foundation DOES NOT
endorse political candidates and religion or religious preferences.</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: x-small;"><span style="font-family: Cambria, serif;">This blog
is provided for moral support purposes only. This blog is not a substitute in
any way for medical advice, diagnosis or treatment. Always seek the advice of
your physician or other qualified health provider with any questions you may
have regarding a medical condition. Never disregard professional medical advice
or delay in seeking it because of something you have learned from this blog.</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
<br />
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<span style="font-family: Cambria, serif;"><span style="font-size: x-small;">The
Foundation does not recommend or endorse any specific tests, treatments,
physicians, products, procedures, opinions or other information that may be
mentioned in this blog. Reliance on any information provided by the Foundation,
Foundation volunteers, staff or guest blogger/s is solely at your own risk. You
should not rely on information you receive from or through the blog for any personal,
medical or health decision, but should consult with a qualified professional
for specific information suited to your family member’s case.</span></span><span style="font-family: 'Times New Roman', serif; font-size: 13.5pt;"><o:p></o:p></span></div>
</div>
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<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">I
found out I was pregnant with my second child around my son’s fourth
birthday. It was not a happy event.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<a href="http://2.bp.blogspot.com/-Qm8gfXKFMik/UxOnvSEJurI/AAAAAAAAACk/3xmNpTgaGl0/s1600/Pic1.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-Qm8gfXKFMik/UxOnvSEJurI/AAAAAAAAACk/3xmNpTgaGl0/s1600/Pic1.JPG" height="150" width="200" /></a><span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">I
was almost 41 years old. My son is high functioning autistic, but
his special needs had taken a toll on my energy in the preceding
years. I had completed a difficult dissolution of a relationship
with his dad, starting when my son was three months old, and had only briefly
entered into a very short relationship with another man. I was single,
with no financial means to properly support us. And now, I was
unexpectedly pregnant again.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">I
did not know what I was going to do. I made an appointment with my
doctor for early January, 2012. Until that time, I decided to wait
and see what Mother Nature had planned for me. Perhaps this would
not be a ‘sticky baby’.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">The
baby stuck, and I was referred for a high risk ultrasound (because of my age,
and because I had miscarried prior to the birth of my son) in early
February. By that time, I had, with psychological support, decided
to continue with the pregnancy, irrespective of finances and life
obstacles. When I went to my ultrasound, I chatted with the
technician and the antenatal specialist. I noticed that the
technician was watching the monitor for the results, and kept turning and
looking at the doctor. When the ultrasound was concluded, the doctor
took me into her office and closed the door.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">They
had observed multiple issues with the baby. She had cysts in her
brain; abnormalities in the heart; her kidneys were grossly enlarged; her
fingers did not seem to be properly positioned; and she had severe cystic
hygroma (build up of lymphatic fluid), on her neck. The doctor
advised me that this could be one of several different conditions, and briefly
reviewed them. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">I
was under severe strain and completely broke down in the office. I
did not know what to do. This was an unexpected situation – first
coming to terms with the pregnancy, waiting to see if I would miscarry, making
the decision to have the baby without spousal support, and now, finding out
there was something seriously wrong and having to reconsider all my options
again.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">We
decided to proceed with an amniocentesis. It was difficult waiting
for the results, but when they all came back, they were clear for the usual
disorders. I was again thrown into a state of uncertainty – what did
this mean for the future of my child?? How would I cope with all of
this alone?? What should I do??</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">I
consulted with medical genetics in our region. They reviewed my family’s
health history and saw no evidence of other possible conditions. I
also spoke with the neonatologist at the hospital. She advised me
that the kidneys were continuing to grow at an alarming rate. There
was a strong possibility that they would absorb too much of the amniotic fluid
and thus the baby’s lungs would not properly develop, and in this case,
post-birth death was inevitable. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">I
decided to take it week by week. As the pregnancy progressed, the
baby’s brain cysts diminished. Her hands seemed to be OK, although
she was holding her fingers in an odd manner. I met with a
cardiologist who stated that although there were abnormalities, they were not
extremely severe and seemed to be stabilizing. Her kidneys also
stabilized, although they were still distended. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">I
was going for bi-weekly monitoring at the hospital, which took a long time,
because I had also developed a condition where I was producing too much
amniotic fluid (I was actually drained twice during the
pregnancy). The baby was swimming and swimming constantly so a
thirty minute session turned into two hours with this baby! At 36
weeks, I went for my monitoring, and they could not get consistent
results. I went back the next day, and the antenatal specialist came
to speak with me. Although it was not a medical ‘emergency’, we
decided that due to the sudden disparity in results, it would be best if the
baby was being monitored outside of me.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">Our
goal during the pregnancy was for Eden to bake in my belly until the end of
June. On June 29, I was induced, with an eventual emergency
caesarean being performed. Eden Grace Christine was born at 4:22 am
on July 1, 2012. She had met her first goal – she had baked until
the end of June. Surely this meant that everything would be all right.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
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<div class="MsoNormal">
<br /></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
<div class="MsoNormal">
<a href="http://1.bp.blogspot.com/-jDru2zg-xZA/UxOnvT51pII/AAAAAAAAACs/v9EdIIBPYY0/s1600/DSCN1348.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://1.bp.blogspot.com/-jDru2zg-xZA/UxOnvT51pII/AAAAAAAAACs/v9EdIIBPYY0/s1600/DSCN1348.JPG" height="150" width="200" /></a><span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">The
birth was very difficult and Eden was taken to NICU immediately. I
did not realize it at the time, but it was four minutes to her first breath;
she had to be resuscitated repeatedly; and her APGAR scores were very low
(two/three). She remained in NICU all day. I wanted to
see her, but was advised to not get up due to the risk of
hemorrhaging. I waited until my son came to visit that evening with
his dad. I said, “get the wheelchair, I’m going to see her.” He
wheeled me into NICU with my son.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">When
we entered, I noticed the nurses were looking at each other as we
approached. When we got to her incubation cot, she was
completely swaddled, with only facial features showing. I peered
anxiously at her. She seemed to look normal. I was
extremely relieved. My son reached in and tickled her foot and told
her he loved her. It seemed that all my worries were alleviated.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">I
went back to my bed and after my son left, tried to sleep. In the
middle of the night, the NICU nurse came to get me. The
neonatologist was in NICU and wanted to see me immediately… </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;"> </span><span style="font-family: Cambria, serif; font-size: 12pt; text-align: center;"> </span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">The
nurse got a wheelchair and took me in to see the neonatologist. She
greeted me with “I don’t think you understand how serious this is” and
proceeded to review a litany of problems the baby was having. She
was having both silent and visible seizures, and her brain was growing too
quickly. She had apnea – her heart and respiration were stopping
intermittently. Her liver and spleen were grossly enlarged, and they
didn’t know why. Her kidneys and bladder were anatomically
incorrect. She was holding her hands and fingers in an unusual
position. She had jaundice. She was not responding
normally. She was struggling to survive.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">I
looked down at my little baby, swaddled in an incubation cot. There
were tubes everywhere, monitors blinking and beeping. I was in a bad
dream – no, I wasn’t, this was reality.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">The
next morning when I went in to see Eden, she was not swaddled. I
froze in horror when I saw her little body exposed for the first
time. She was completely puffed up and swollen. She
looked reptilian. Her ear lobes were so swollen they were touching
her shoulders. Huge beads of yellowy fluid were growing out of her
pores and running across her skin. She was shaking; she was
trembling; you could see her little chest trying and trying to push up with her
breath. I stood beside her cot, and put my hand in and stroked her
head. I started to cry, silently. Huge tears ran down my
face and I could actually hear them plop on the floor. The nurse
came over and I said, “she doesn’t look good”. She just looked at me
and stood there, in silent agreement and comfort.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">I
went back to my room and cried, and cried, and cried. I did not want
my baby to suffer like this. My whole being, every ounce of myself,
was in pain.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">After
this, I felt myself change. I wanted nothing to do with this
baby. I did not want to see her. I did not want to be
with her. I did not want to hear anything about
her. While I had no real intention of abandoning her, I recoiled at
the thought of having anything to do with her. I forced myself to go
into the neonatal unit and hold her. The first time I held her in
the rocking chair, every hair on my arms and the back of my neck stood up;
every fibre in my body was rigid; I walked away with a huge jaw and head
ache. I forced myself to get onto a schedule where for three days, I
would go and hold her for an hour at a time, morning, afternoon and night.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="font-family: Cambria, serif; font-size: 12pt;"><br /></span></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">By
the end of the second day, I was able to look past the tubes, her pain and
suffering, and see her features. Those comical eyebrows – long and
unruly. The tiny, transparent fingers – little veins no bigger than
a pencil mark. Little toes, so long that and curled under, touching
the bottom of her foot. The rows of curls, plastered to her
head. A turned up nose and rosebud lips. The scrunched up
newborn face, a little monkey and little old man at the same time. I
felt my heart start to crack. By the end of the third day, I had
started to love this baby and vowed to do what I had to so that she would not
suffer.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<a href="http://2.bp.blogspot.com/-0g0E29UaCag/UxOnv1EZ85I/AAAAAAAAAC8/LJ1xBGrtUd0/s1600/pic3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://2.bp.blogspot.com/-0g0E29UaCag/UxOnv1EZ85I/AAAAAAAAAC8/LJ1xBGrtUd0/s1600/pic3.jpg" height="133" width="200" /></a><span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">Eden
spent 25 days in NICU. Over that time, she got off oxygen, started
on phenolbarb for her seizures, adjusted to tube feeding, and was also
breastfeeding as well as she could. She had made great gains, but
little did I know our adventure, with lots of setbacks, was just starting.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">The
month and a half after discharge was like being in baby hell. I was
the walking dead, breastfeeding, tubefeeding, administering medication,
changing diapers, and tending to my son. The doctors still did not
know exactly what was wrong with Eden, and an appointment was scheduled with
medical genetics for early September. Between discharge and the
genetics appointment, Eden’s health started taking a down turn. She
started vomiting intermittently. Her stools were completely
liquid. Her colour was poor, her face drawn, black circles under her
eyes. Her disposition even worse.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">When
we eventually attended the genetics appointment, the geneticist said she
thought that Eden was either a Noonan’s or Cardio-facio-cutaneous (CFC)
child. We would have to wait until the results came back to be
sure. On our trip back home from this hospital, Eden got very sick
and started vomiting incessantly. She was admitted to another
hospital and transferred back to our home hospital, where she was diagnosed
with septicemia and having a UTI. She spent another ten days in
hospital, and although she did not at first respond to the antibiotics,
eventually she shook off this first medical scare and was sent home on a
prophylactic antibiotic.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
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<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">The
next six weeks were a blur of appointments, and eventually another downturn in
Eden’s health. She was taken off the phenolbarb, which was
positive. She had started to gain weight while in hospital, but
about two weeks after discharge, it tapered off, and then she started losing
again. The incessant vomiting started; the liquid, foul smelling
stools; and her disposition again took a turn for the worst. She
didn’t appear to be able to see anything; her eyes were rolling constantly.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">She
had terrible diaper rash; her skin was ulcerated and sores getting
deeper. I tried every possible solution; every barrier cream,
keeping her bottom dry and in the sun; bathing her, not bathing her. I
could not get it cleared up.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">And
to make matters worse, she would NOT keep the tube in. She would rub
her head, sneeze, cough, vomit, grab it out. If I turned my back,
went to the bathroom, or left her for more than a few seconds, she would have
that tube out. I was constantly running to the hospital to have it
put back in, as I couldn’t do it myself due to her high, narrow nasal passages.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">In
November, Eden was again hospitalized with a UTI. She responded to
the antibiotics in five days, and was discharged on a higher dose of
prophylactic antibiotics, as well as iron.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">We
again went home, and started this routine again. Weight up; weight
plateaued; weight down. Stools, diaper rash, and head to toe
eczema. Eden cried incessantly. The only way to keep her
calm was to hold her very still, and tight, all day, all night. I
thought I was going to completely lose my mind, between caring for this baby
and trying to give my son the attention and care he required. Going
to appointments. Waiting for weekly weigh-ins with extreme
anxiety. Not being able to understand why she was doing so poorly,
when she was eating. I was starting to lose my grip.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">In
January, we had a consult with medical genetics via
teleconference. When we started the discussion, I was sitting back
on the couch. By the end, I could see myself on the screen - I was
leaning forward, elbows on knees, mouth hanging open.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">The
geneticist said that Eden had some duplicated material on chromosome
22. It was an uncommon finding, and there was limited information in
the medical literature, so the significance of this was not
clear. She also had a specific mutation in the NRAS gene that
had not been reported in the literature before. Because of this, it
was clear that she was a RASOpathic child. She had some
physiological characteristics of Noonan’s Syndrome, but also some of
CFC. The diagnosis was not clear, and as such, there was no
prognosis. The only things they could say was that her physiological
development was going to be significantly delayed, and that they had no idea
regarding intellectual development.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">I
was dumbfounded. I had been waiting for seven months for a firm
diagnosis, so I could know what gene was disrupted, and the extent of it, so
that I could have some expectation for her development and treatment
plan. I was completely shocked. My baby did not ‘fit’
into any group. The doctors were unfamiliar with her condition – the
children’s hospital had never seen this type of thing before. I was
scared and upset. How could I be sure my baby would get everything
she needed to reach her full potential? What was going on with her
health?</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">By
mid February, Eden’s health had continued to go down. I was beyond
frantic. For four days, I tube fed her drip by drip
manually. I was not sleeping at all, just holding and trying to feed
my baby. After this particular weekend, she was admitted to our
local hospital and then transferred to the children’s hospital by
ambulance. This trip normally takes five hours; due to a snowstorm
and health complications during transit, it turned into an 11 hour
trip. By the time we got to this hospital, I was exhausted. She
again had septicemia and a UTI. I spent the next three days trying
to get myself together.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">We
spent two weeks at the children’s hospital. Eden had consults with
nephrology, urology, immunology, hematology, opthamology, endocrinology,
cardiology, and so many others I can’t remember. She had minor
surgery on her ureters (she has four ureters instead of two; and two of them
were completely blocked). She had adrenal
insufficiency. But overall, she was now going to be followed by specialists
every two months for the long term future. I was so relieved and
happy. Finally my baby was going to be OK.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<a href="http://2.bp.blogspot.com/-KLbpmqJ5nns/UxOnv2MJz0I/AAAAAAAAAC0/IhSHAvmeDGE/s1600/pic4.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-KLbpmqJ5nns/UxOnv2MJz0I/AAAAAAAAAC0/IhSHAvmeDGE/s1600/pic4.jpg" height="191" width="200" /></a><span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">Eden
is now almost nine months old, but physiologically is at about a four month
development stage. She is transitioning to a bottle (whether she
wants to or not </span><span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;"></span><span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;"> ). She
is still not growing the way she should, even according to the Noonan’s growth
chart. She has had extensive brain and eye testing, and it seems
that everything is wired and firing, although she does not
track. She receives physiotherapy every two weeks to develop body
awareness and movement. She will have more brain testing, as it
appears her adrenal insufficiency is originating in her brain/pituitary
gland. She is being followed closely by all her
specialists. For a nine month old baby, she has quite a full medical
file.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">Eden’s
health is up and down, seemingly daily. I truly am at a loss to
explain why she is not gaining any weight at all. This is the last
big piece of the puzzle I must solve immediately. But I am so tired.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;"><br /></span></div>
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<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">I
am looking ahead into the future, and I don’t know what I see. I
hope I see a baby that is growing, albeit slowly. I hope I see a
baby who starts to laugh and smile and respond to her mom and big
brother. I hope I see a young child who can see and move and
walk. I hope I see an older child, healthy and happy.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;">I
live in hope. I hope you do too.<o:p></o:p></span><br />
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;"><br /></span>
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;"><br /></span>
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;"><br /></span>
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;"><br /></span>
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;"><br /></span>
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: 12pt;"><br /></span>
<br />
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<span style="font-size: x-small;"><span style="font-family: Cambria, serif;">DISCLAIMER:</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
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<span style="font-size: x-small;"><span style="font-family: Cambria, serif;"><br />
The article above was written by a guest blogger. The opinions and ideas
written belong solely to the guest blogger. Noonan Syndrome Foundation DOES NOT
endorse political candidates and religion or religious preferences.</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: x-small;"><span style="font-family: Cambria, serif;">This blog
is provided for moral support purposes only. This blog is not a substitute in
any way for medical advice, diagnosis or treatment. Always seek the advice of
your physician or other qualified health provider with any questions you may
have regarding a medical condition. Never disregard professional medical advice
or delay in seeking it because of something you have learned from this blog.</span><span style="font-family: 'Times New Roman', serif;"><o:p></o:p></span></span></div>
<span lang="EN-CA" style="font-family: Cambria, serif; font-size: x-small;">
</span><br />
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<span style="font-family: Cambria, serif;"><span style="font-size: x-small;">The
Foundation does not recommend or endorse any specific tests, treatments,
physicians, products, procedures, opinions or other information that may be
mentioned in this blog. Reliance on any information provided by the Foundation,
Foundation volunteers, staff or guest blogger/s is solely at your own risk. You
should not rely on information you receive from or through the blog for any
personal, medical or health decision, but should consult with a qualified
professional for specific information suited to your family member’s case.</span></span><span style="font-family: 'Times New Roman', serif; font-size: 13.5pt;"><o:p></o:p></span></div>
</div>
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<span style="font-family: inherit;"><span style="color: #45818e;">Last night I laid in
bed unable to sleep--so many thoughts on my mind. Not one thought, not one
particular anxiety, just thoughts. Frustrated, I decided to see if Netflix is
Android enabled on my new itty, bitty Galaxy 3.6 Note. If Netflix was possible,
I would bring up my account and find something to watch in bed. Really, the
idea seemed incredulous. In my 70's childhood, I never even dreamed that
someday I might be able to lay in bed and hold a three inch "TV" in
my hand, minus any cords or antennae, and watch a movie!</span><o:p></o:p></span></div>
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<a href="http://3.bp.blogspot.com/-_clCjD3wqXE/UxN0lW2-QII/AAAAAAAAAAw/xhvZxE_d0uM/s1600/Rhyse3+009.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" src="http://3.bp.blogspot.com/-_clCjD3wqXE/UxN0lW2-QII/AAAAAAAAAAw/xhvZxE_d0uM/s1600/Rhyse3+009.JPG" height="150" width="200" /></span></a><span style="font-family: inherit;"> </span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">But I did. I watched a
movie that I had recently added to my instant queue--knowing it would be my
"kind of movie." The clean, girly, sappy kind of movie. BBC makes the
best!</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">Within the first
couple of minutes I was in tears. Not just tears, but rolling, strolling down
the cheeks kind of tears. This movie hit me on all kinds of levels, and opened a lid allowing months and months, not to mention years, of mom emotions to come
flooding out.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">Fourteen months ago, I
delivered a beautiful five pound, four ounce, full term baby boy! Beautiful I
say, but admittedly I was dumbstruck the first few moments after his birth
because I wasn't expecting such a tiny baby! I had experienced gestational
diabetes (due to my uhh, "over 40" status) and carried to 39.2 weeks.
How could this baby be so small?</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">The birth happened so
fast, as I knew it would. My first daughter, Maggey, came in only a couple of
hours and I was warned this one, being the second, would come much faster. True
enough. At 7:59am, while standing outside with my daughters waiting for
the bus, my first contraction hit. Within minutes I knew I wasn't going to last
long. I was scheduled for an induction the following day, but the Time was now!</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">I arrived at the
hospital dilated to 7 and moving along fast...and in intense pain. At 11:21am
Rhyse Addyson Cole was born.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">The attending OB who
delivered Rhyse was only in the room about 10 minutes from push to
delivery--then he was gone. At that point the attending hospital doctors were
in charge.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">Rhyse's Apgars were
good. He was small. But there was no immediate indication that something was
very wrong . . . at first. But after being cleaned up and bundled up and
smeared with eye cream it was time to attempt his first feed.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><a href="http://3.bp.blogspot.com/-DgaK_bH5dDw/UxOlNSIv3sI/AAAAAAAAACU/AGjVlvihzxg/s1600/Rhyse3+020.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-DgaK_bH5dDw/UxOlNSIv3sI/AAAAAAAAACU/AGjVlvihzxg/s1600/Rhyse3+020.JPG" height="150" width="200" /></a></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">The feed didn't go
well. In fact, Rhyse didn't give any indication at all that he wanted to suck.
My daughter Maggey, seconds after birth, was like avacuumcleaner! And she still
is! But Rhyse's first feeding and subsequent attempts completely failed. I had
no idea at that moment that feeding was not only going to be an ongoing
challenge, probably for years to come, but the medical package was only going
to get bigger and bigger and heavier and heavier as the days drew on.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">By late afternoon it
was obvious Rhyse wasn't going to feed. Not terribly concerned the nurses
informed me that babies are born with all the extra fluid in their cells to
keep them hydrated in the first few days of life. If he went 24 hours without
feeding, he would be ok. But that wasn't OK with me. I knew that a baby's
natural inclination to feed was immediate. Not 24 hours later, unless
something </span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">was amiss.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">Exhausted and whirling
from the birth and the high of delivering another baby (one of those,
"over 40 surprise babies") I was so incredibly excited to add a boy
to my pettite passel of two girls, Leah who was 8 and adopted from Kenya and
Maggey who had just turned 5.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">By evening a few
family members had come and gone, husband went home to be with our girls, and I
was left alone with Rhyse, ready to sleep--or at least make a valiant attempt.
My husband and I had filled out our, "celebration lunch" form for the
next day courtesy of the hospital, complete with steak and salad, and I was
ready for a good night and a two day lay in.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">The failed feedings
continued until late in the evening increasing my anxiety, but midnight was fast
approaching and I was beat with emotion.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">A nurse came in to
take Rhyse to his protocol blood sugar check, assuring me he would be back by
my side in an hour. In two hours the nurse would wake me up for another
feeding, well failed feeding probably. My lights were turned off.
Finally.Though I tried desperatelyto stay awake until Rhyse returned,
I succumbed to sleep.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">A few minutes before
5am the third shift Doctor walked into my room, turned on my light and startled
me out of a deep, deep sleep and said he needed to "talk to me."</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">With blurry eyes and
slow brain I tried very hard to make out the clock, look around the room for
Rhyse, and look at the doctor all in one fell swoop. Through </span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">the fog I
instinctively knew my life was on the verge of changing. My son never came back
from the mid-night blood check, no one woke me up for a feeding, and doctors do
not enter your room at 5am for any reason but to deliver unwanted news.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">I will never forget
his words. "Your son is very, very ill. His condition is deteriorating
(failing to thrive) and his blood counts are bad. His white blood cell counts
are in the 150Ks and blood platelets are 9K. The exact opposite of what they
should be. There is one probable explanation for this: Leukemia. Your son may
very well be terminal, but we are sending for an emergency transport to Helen
Devos Children's Hospital (closer to my home than the hospital I was in). We
are not equipped for this kind of situation."</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">The doctor walked out
of the room and I never saw him again. His shift was over.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">After all those words
quietly slid out of his mouth I was overcome with nausea. I burst out of my bed
and dashed to the bathroom and puked. No pretty way to say it. I had never
tossed my cookies from emotion in my life: but now I have.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">Alone and hardly able
to talk I called my husband on the phone and told him to come now instead of
later. Rhyse was sick. Very sick.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">Within a very short
amount of time my husband, Jon, arrived. We clung to each other for support. We
have been through a few other intense circumstances in life together, and we
were rooted deeper because of it. But this was every parents nightmare:
something was wrong with our baby and we had no idea what the future held. This
was more traumatic than anything we had ever encountered.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">At less than 12 hours
old Rhyse had already been moved to the "special babies" part of the
nursery and hooked up to those soon to be all--too--familiar monitors. I could
no longer hold him freely.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;"><br /></span></span></div>
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<br /></div>
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<a href="http://2.bp.blogspot.com/-YDmgPgQQLl0/UxOhYbLsLaI/AAAAAAAAABY/P321t5mCsyQ/s1600/Rhyse3+026.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-YDmgPgQQLl0/UxOhYbLsLaI/AAAAAAAAABY/P321t5mCsyQ/s1600/Rhyse3+026.JPG" height="150" width="200" /></a><span style="font-family: inherit;"><span style="color: #45818e;">By 8 am Rhyse was
transported by EMS to Devos Children's Hospital, and I was discharged. I could
barely walk without intense pain, and I couldn't stand up straight at all.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">Jon and I drove in
silence to Devos:my mind didn't know what to focus on. I had already cried my
eyes dry, how much more could I cry.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">As we pulled in the
parking ramp my husband very wisely said, "let's not let this tear us
apart. Let's believe today is the worst day: each day will get better."
With the Lord as our backbone, we promised each other no matter how painful
this experience is going to be and no matter where it leads, we will be each
other's strength, not enemies.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">I had never been in
the Children's hospital before. Devos had only been open for one year, a
massive and picturesque building filled with the best of the best specialists.
But the layout was confusing. From the very beginning we went the wrong way down
one way lanes in the parking ramp and got turned around in the elevators. When
we finally figured out how to get to NICU we were required to stand in line at
a desk and show IDs and get permanent passes. A pass to see my son? It was
surreal.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">In intense angst we
rode the elevator up to the third floor NICU. Using our new passes we were
admitted into the unit, told we had to watch some sort of NICU etiquette video
and upon every entry, scrub in. I understood the reasons for washing up to our
elbows with each entry, but every second away from my son seemed like hours.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">Mommy sonar is
powerful. Even more powerful than I knew. As I watched the electronic doors
open to the inner court of the NICU I heard my son crying, squeaking was more
like it. I had only heard him make a noise a few times in the first few hours
of his life as his tiny, wet lungs at birth didn't allow for much noise. But
through the maze of rooms before me I instantly knew where he was. It was the
most amazing sense of motherhood. We did not know his room number, but I walked
straight to his room, following his noises.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">Rhyse was all alone in
the room, with many doodads and gadgets either strapped, taped or stuck to his
body, and echoes of beeps and alarms sounding above him. I was overcome with
emotion, and I cried, again. Only 12 hours ago I was still pregnant and greatly
anticipating this new, little life. Now this precious little life was attached
to something else: it felt like he was torn away from me and I was left wounded
and bleeding.</span><o:p></o:p></span></div>
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<span style="color: #45818e;"><span style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: inherit;"><b>PART 2</b></span></div>
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<span style="color: #45818e; font-family: inherit;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e;"><span style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">With postpartem hormones
flailing about wildly I couldn't contain my emotions. I was a weepy mess.
</span><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">I planted myself in
Rhyse's room. I told the nurses I wasn't leaving. I would spend the first
night with Rhyse--no matter what. How could I not? Although time
with baby is highly encouraged in the NICU, sleepovers not so much. I
could tell the nurses were not happy with my decision: "Moms need their
sleep, too" they said. And I said, "I just had my son
yesterday, I cannot abandon him." </span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">Strangers. That is
how I saw the multitudes of nurses that came and went and poked and prodded and
crammed ng tubes into his nose and IV's into his small, frail body.</span><o:p></o:p></span></div>
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<span style="font-family: inherit;"><a href="http://3.bp.blogspot.com/-DuB99a1L-1A/UxN1nI9IIoI/AAAAAAAAAA4/mhB_ZkRGuYM/s1600/Rhyse3+003.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-DuB99a1L-1A/UxN1nI9IIoI/AAAAAAAAAA4/mhB_ZkRGuYM/s1600/Rhyse3+003.JPG" height="200" width="150" /></a></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;">The first couple of days
are marked on my mind forever. My little 5 pound, 4 ounce baby was
instantly coined, "Mystery Man" by the specialists and other doctors.
At first the doctors administered a couple bolus's of IVIGs, thinking his
blood type was simply colliding with mine.</span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">Some sort of protein
mis-match would have been an easy answer. But after a couple of days
Rhyse's platelets and white blood cells were still out of wack, and he was
diagnosed with Failure to Thrive. From this point on, the underlying
diagnosis hung in the air: we just didn't have any answers. </span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">At seven days old, Rhyse
underwent his first bone marrow aspiration. Did he have Leukemia or not?
Rhyse's hematologists and geneticist batted this conundrum back and
forth, back and forth. The hematologists couldn't come to
a definite diagnoses of Leukemia. The geneticist could not come
to a definite diagnosis of Noonan syndrome. Rhyse didn't 'look
like' a Noonan baby--at least not for sure. And not yet.</span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">For me cancer wasn't the
worst diagnosis: the worst was the "unknown." I didn't even
know which answer to hope for, if I had to choose: Noonan syndrome or
Leukemia. I knew that Leukemia is a blood cancer; but Noonan syndrome?
What in the world was that? </span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">Those 19 days in the NICU
might as well have been 90. Each day was emotionally exhausting, and
never a clear answer. Not to anyone's fault. As I have since
learned, Noonan syndrome comes in all sorts of sizes and shapes, and is
packaged completely different for each child. </span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">I must pause here and
interject a few words on the NICU experience itself, apart from the medical
mystery we were trapped in at the time.</span><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<a href="http://3.bp.blogspot.com/-Z7iKT5WclDQ/UxOjtxr8IrI/AAAAAAAAACM/pFw0p6cZ1uE/s1600/Rhyse3+031.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-Z7iKT5WclDQ/UxOjtxr8IrI/AAAAAAAAACM/pFw0p6cZ1uE/s1600/Rhyse3+031.JPG" height="156" width="200" /></a><span style="font-family: inherit;"> </span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">Each moment of every day
was a myriad of emotions and anxieties and downright fears. I don't know
how to put these things that moms feel into words. I can only imagine that
those who have gone through this kind of experience, "get it." </span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">Each morning I would see
my two girls off to school at 8am. The moment Maggey and Leah were on the
bus I left for the hospital. I was often the first NICU parent to sign in
for the day. </span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">Driving to the hospital
was an experience itself. Never in my wildest imagination did I dream
that I would be driving each morning to see my newborn son. I ached with
my entire being to get the hospital, wash up, push the oversized rocker next to
his bin, scoop him up and hold him for the next 8 hours. Some days I
would eat . . . many days I never left the room. I talked to him, I
rocked him, I sang to him, I read him scriptures, I hugged and kissed and loved
him. </span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">Words cannot contain the
pain I experienced each day as I walked away from him, down the first set of
elevators, around the corner, through the massive bridge across Michigan
street, down the parking ramp elevators and into the parking ramp. </span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">I cried every step of the
way. I cried every single day. I couldn't walk across that bridge without
tears streaming down my face. I felt guilty for being so emotional.
But then I couldn't seem to feel otherwise.</span><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<a href="http://2.bp.blogspot.com/-KQgbghbCGbs/UxOg5D7eg9I/AAAAAAAAABI/Uziytko_5Ak/s1600/Rhyse+021.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-KQgbghbCGbs/UxOg5D7eg9I/AAAAAAAAABI/Uziytko_5Ak/s1600/Rhyse+021.JPG" height="200" width="171" /></a><span style="font-family: inherit;"><span style="color: #45818e;">Each evening I returned
home to my family so that my husband could take the evening shift with Rhyse.
I always said, "Please hold him. Don't put him down."
Rhyse rarely laid in his bin. I couldn't bear to see him all alone
in a clear tub with no human: no warmth from a mom or dad.</span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">When I walked into my
house I always went straight into my room, dropped to the floor and sobbed and
sobbed. My daughter Maggey would always come in and ask, "Are
you going cry again tonight?" I would always say, "Yes."
I love Rhyse just as much as I love you and I miss him. She would
tell me she would "be there" for me, whatever I needed.</span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">Rhyse's crib is in my
room. I think that made my heart bleed all the more. I got to the
point I could not look at the empty crib at the end of my bed anymore. It
just tore me up inside.</span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">While Rhyse was in the
NICU he had two bone aspirations and two heart ultrasounds. The heart
ultrasounds did show two ASD's and cardiomyopathy. But the heart defects
were minor and merely needed to be monitored. It was the bone aspirations
that were critical in their findings. By the second bone aspiration, the
doctors determined Leukemia was looking less likely and Noonan syndrome more
likely as the answer. Although his white blood cells continued to be sky
high and his platelets low, there was no evidence of Leukemia in his bone
marrow. But again, nothing was 100% ruled in or out. These findings
gave us a small breath a relief.</span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">After many, many platelet
transfusions and being fed by ng tube, the overarching issue that rose to the
surface was feeding. Rhyse could receive his transfusion on an out-patient
basis. But Rhyse could not consume 50ml of breast milk in 15 minutes.
That is the requirement for being released from the NICU. Every time he
failed the requirement the ng tube was put back in.</span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">Before long Rhyse figured
out how to pull the ng tube out of his nose! As fast as the nurses would
get it fed in, he worked his little arms until he grabbed the tube and yanked
it out again. It was sort of a game, and the nurses were not amused!
I did find it amusing though! It was our first peek at Rhyse's
little personality coming to the surface!</span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">So with each day
presenting feeding challenges, a lack of definitive answers, and Thanksgiving
fast approaching the days drug slowly on. Every day seemed like a week.
The world was going on its merry way all around me. But my world had
stopped on October 18th when this saga began.</span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">Our parents and brothers
and sisters-in-law were a wonderful support system for us. They did all
they could to keep visiting and loving and encouraging us as best they could.
We knew they couldn't understand, but they helped us not feel so alone in
the endless journey.</span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">On November 4th, Jon and
I were sitting in our living room discussing how we were going to work out the
logistics of another week of NICU and kids school and Jon's job, as my in-laws
has gone home to Indiana and Rhyse still wasn't home. In mid-discussion
the phone rang. A nurse asked for me. The previous day we had requested a
meeting of all the doctors involved with Rhyse's care so that we may get a
better picture of what was going on in their minds and what the next week would
look like. But evidently someone had decided that Rhyse was ready to go
home that weekend, so the meeting did not need to occur! </span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">The elation we felt was
palpable! We lit up with excitement, calling up all family members to
share the good news! Rhyse was coming home the next day! </span><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: inherit;"><a href="http://3.bp.blogspot.com/-fE9RLxVVbGc/UxOhHZtX1mI/AAAAAAAAABQ/2PE0K3ApF1c/s1600/Rhyse+015.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-fE9RLxVVbGc/UxOhHZtX1mI/AAAAAAAAABQ/2PE0K3ApF1c/s1600/Rhyse+015.JPG" height="150" width="200" /></a></span></div>
<br />
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">Though Rhyse was released
on November 5th, 2011, we had miles of questions to be answered and obstacles
yet to be overcome. He was released without any official diagnosis and
insurance approval pending for the genetic testing that would hopefully provide
an answer. I say, "Hopefully" because even a genetic test, we
were told, may not reveal Noonan syndrome. Many of the Noonan genes had
been identified, but then many have not. He may show signs of clinical
Noonan syndrome, but we were praying for a genetic confirmation that would
guide Rhyse's specialists and us in the right direction for medical
management: and most importantly rule out Leukemia for good. </span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">Rhyse
was released with a JMML diganosis, but we were hopeful it was,
"Noonan syndrome related JMML" (because that would mean it would be a
more mild case). No one was sure.</span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;">Two days after Rhyse was
released I had to bring him back to hematology for a blood check and subsequent
transfusion. This process thrust me into the next phase of the new
journey.</span><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: inherit;">My biggest fear in the
NICU was that Rhyse would not be able to properly bond with me as his mom.
Many of the spilled tears were because of this anxiety that wouldn't go
away. I had heard and read of so many children who were permanently
defunct in some ways because of the loss of bonding time with a mother. I
am also an adoptive mother: I know first-hand what happens to a child who has
never been able to bond to their biological, God-given parent and have to
transfer that powerful need to another. Though I will always advocate for
adoption, there are intrinsic issues with bonding that plague both adoptees and
adoptive parents for life. And I didn't want my son to deal with those
pains because of NICU time. Maybe this was irrational, but it was an </span><span style="color: #45818e;">enormous</span><span style="color: #45818e; font-family: inherit;"> burden at the time. And one more anxiety that threatened to
overtake me. If it were not for the Lord, and the constant reminding through
his Word that we must cast our cares on Him and receive his Peace, I don't know
how I would have made it through. Every evening I would be overrun with
anxiety; each morning I would take up His peace, again. </span><span style="font-family: inherit;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;"><b><br /></b></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;"><b>PART 3</b></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;"><br /></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;"><span style="color: #45818e;"><br /></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Our English language
includes a plethora of words to choose from. But still I feel I
cannot find the words that adequately convey the depth of emotion I as a mom
feel for my child. Yes, my child is broken. My child is not the
"perfect, healthy child" that we/I anticipated. But in many ways Rhyse
is no more broken and imperfect than I am, just in different ways. Loving
him in spite of his genetic mutation and subsequent suitcase of medical
challenges, is no less wonderful than any other child.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<a href="http://3.bp.blogspot.com/-wF7nEiiMlvU/UxOiHQDB6qI/AAAAAAAAABk/W5qIK8KPzBw/s1600/Rhyse_Jan+001-003.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-wF7nEiiMlvU/UxOiHQDB6qI/AAAAAAAAABk/W5qIK8KPzBw/s1600/Rhyse_Jan+001-003.JPG" height="150" width="200" /></a><span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">I had spent nearly three
months living in a state of complete, emotional upheaval. My journey began
with a jolt into the world of NICU babies: preemies, critically ill, and
those with major and minor birth defects. I didn't know from one minute
to the next whether I was supposed to be prepared for losing my
son, or not. I held onto the words of each doctor and specialist,
but because of the mystery involved, one day their words seemed to
soothe my fears of losing my son, and others their words seemed to hint at
loss. Again, my Faith in the Lord kept me going a midst the emotional
battle. I cried, and I cried some more. But as I realized early on,
I couldn't hold the emotions in: that would have destroyed me from the inside
out. Those tears had to move. And once a tidal wave of emotions
came and went I could actually get a hold of my brain and think clearly again.
</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">So my little mystery man
came home from 19 days in the NICU having finally reached his birth weight of 5
pounds and 4 ounces -- every ounce a victory. He had no underlying
diagnoses just the secondary diagnosis of JMML, thrombocytopenia,
cardiomyapathy, and ASDs. These four labels still didn't add up to
anything but a mystery until a genetic test could reveal the answer; hopefully.
</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">At first I couldn't
believe Rhyse was finally home. For the first time since he was one day
old I was able to hold my son without leads beeping out his vitals, an ng tube,
and an oximeter-- all keeping me from taking more than one step in any
direction away from his plastic bed. In the NICU I would ache to be able
to walk down the hall with Rhyse in my arms just to feel 'normal' for a few
precious minutes. As it were the day Jon and I snuggled Rhyse into his
seemingly oversized car seat and began walking down that hall into the
elevators, around the corner and across the bridge we felt like escapees from
some form of prison! We could hardly wait to get out of the building
with our baby contraband!</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">A very different sort of
daily life started the minute Rhyse was home. It was my turn to be mom and
nurse and aid all rolled into one. I had no idea what was ahead.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Three days after being
released from the NICU Rhyse and I were back at the hospital on the 10th floor
for a blood draw and platelet transfusion. And again three days later.
And for the next two and a half months, twice a week. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">I quickly became
acclimated to protocol on the tenth floor of Helen Devos Children's Hospital.
My days revolved around what I called "transfusion" days.
Either it was the day of, the day after or the day before transfusion
day. The in between days are a hazy blur. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">In mid-December 2011
Rhyse's hematologists decided it would be better for him to have a broviac
because his veins were no longer able to support an IV--they had all collapsed,
unable to heal before the next transfusion. The nurses had used up all
the possible sites from scalp to ankle; all would blow.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: Cambria, serif; font-size: small;">One week after having the
broviac placed Rhyse pulled it out. Thus we were back in the hospital for
another three day stay for a second broviac to be placed. Two weeks later
it slid part of the way out while a nurse, post </span><span style="color: #45818e; font-family: Cambria, serif;">transfusion</span><span style="color: #45818e; font-family: Cambria, serif; font-size: small;">, was changing
the 2x2. That was a night to remember. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">The broviac partially
dislodged and Rhyse began to bleed profusely. Because it was near the end
of the work day doctors were already off shift, leaving the nurses to finish.
And without official say-so they couldn't pull the line the
rest of the way out. We would have to wait for a doctor to be contacted
and give orders. So myself and two nurses held Rhyse down on a utility tray
while keeping pressure on his chest to stop the bleeding. The
bleeding would not stop. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<a href="http://3.bp.blogspot.com/-mQDLawoRuBM/UxOigReL_DI/AAAAAAAAABs/Yc2l0K2HyQE/s1600/Rhyse+007.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-mQDLawoRuBM/UxOigReL_DI/AAAAAAAAABs/Yc2l0K2HyQE/s1600/Rhyse+007.JPG" height="200" width="150" /></a><span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">By late evening we had
been holding Rhyse in one position,and our bodies in one position for several
hours: we were beyond stiff and fatigued. Throughout the entire time I
rested my head next to Rhyse's and talked to him, telling him over and over
again how much I loved him. Rhyse, however, didn't find my small act of love
too endearing: he just screamed.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Around 9pm that night the
nurses finally got the OK to pull the line the rest of the way out. The
bleeding stopped. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Two weeks after the
second broviac was dislodged Rhyse's platelets suddenly leveled out above 20K
and ever so slowly, began climbing. On December 29th, 2011 he had his
last platelet transfusion to date! Guess we didn't need that broviac
after all!</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">On December 21st, 2011
we received Rhyse's genetic test results. I will never forget the
doctors face as he told me. I could tell he didn't know how I was going
to react to the news. Was this going to be good news or bad news? Was I
going to slip to my knees and sob for all I was worth, or would I be OK.
Well, little did he know that any diagnosis beyond death was a good
diagnosis! I was overcome with relief. At least for a few days.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">I smiled and thanked him
for all his amazing attention to detail and pushing and pushing my insurance
company to approve for the test that would steer him as a hematologist, Rhyse's
cardiologist and geneticist all in the right direction. I didn't care
about a birth defect label. I cared that we had an answer and his medical team
now had a plan!</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
</div>
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<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Thanksgiving had passed
and now Christmas was only days away. Panic began to settle in as I
realized I had not been able to physically or financially "make
Christmas" come to life for my other two kids. Christmas 2011 is not
one to be remembered. We slid through the holidays with few gifts for the
girls and nothing for Rhyse. My only consolation was, "Kids are
young and won't remember." And it is true. They don't remember. I
do.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: inherit;">PART 4</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-vL4DGMwZiGc/UxOjOnWVyxI/AAAAAAAAAB4/RRA72FbG-AQ/s1600/July_2012+005.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-vL4DGMwZiGc/UxOjOnWVyxI/AAAAAAAAAB4/RRA72FbG-AQ/s1600/July_2012+005.JPG" height="200" width="150" /></a></div>
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<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Rhyse and I sat down in
the ophthalmologist’s minuscule waiting room inconveniently
shaped like a triangle. There were only nine chairs tightly squeezed
together within that triangle, leaving no room for a stroller. We were
back for a simple check up: Rhyse had begun to wear glasses at 11 months old.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">It's not too often a
visit to a specialist doesn't include a blood draw or shot of some sort, so
this appointment was a reprieve for both of us. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">As I looked around
the room, at all the other toddlers sitting on their moms' laps, I realized
they were ALL eating some sort of dry cereal out of a kiddy bowl. I wasn't
prepared for the fleeting jealousy. Sitting there watching the other kids
eat twisted my insides into a deep aching for my son to be able to munch on a
bowl of cheerios; an ache for normalcy that I continue to deal
with. Not for myself, but for Rhyse. I admit, some days I do get tired of
the question, "Why is he so small?" But then I look into those
beautiful gray eyes and know that no matter what, through all the medical
challenges, the Lord has been good!</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<br /></div>
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<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">SKIN. That is the name of
the Netflix movie that toppled over the monstrous vats of tears that were lined
up in my eyes. This true narrative takes place in South Africa where
history is deeply embedded with violent acts of racism, even to this day.
The main character is a young girl born to two white Afrikaans
(Afrikaaners are white, dutch Africans in the movie). The sting of her
birth was her color; she wasn't white, her genetics coded black, curly hair and
creamy brown skin. In the age of apartheid, dark skin
meant segregation and alienation. The immediate implication was infidelity.
But such was not the case. She was the child of two white parents.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<br /></div>
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<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Today we know why the
baby was born with dark skin; genetics. During the time of the
colonization of South Africa by Europeans the gene pool changed. Sandra
Laing, the main character, was called "a shame" in the movie.
Throughout the narrative Sandra is terribly cast aside by both her father and
society because of her skin color and curly, black hair -- no other reason.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">I'm taking a deep breath
as I write this. Rhyse isn't "a shame", nor an outcast,
obviously. He's my pride and joy forever. But we do live in a world
of cruelty, now politically named, "bullying." As I watched
this dramatic movie, I cried for Sandra whom I don't even know. I cried for my
adopted daughter, Leah, whose cognitive constraints will always keep her out of
the mainstream, "norm." And lastly I cried for my little Rhyse, who
is the size of a 6 month old (14 pounds at 15 mos old, and 25.75 inches long),
and can't chew real food. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"> </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">All my protective
instincts for his future, and the fears from our scary beginnings
melded together and then burst as I watched Sandra Laing's precious life
crumble, and become the brunt of every bully. It’s like during the movie
she somehow became my daughter. The pain that Sandra’s mom went through
was palpable. I could taste it. I could feel it. In some way,
I could understand. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">These past fifteen months
have not been easy, finding new little medical issues around every corner and
learning to read his cues to meet his needs. But I can honestly say that
since Rhyse’s entrance into our lives, we as a family have experienced more joy
than we ever could have imagined!</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Update January 2013:</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
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<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><br /></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">To date Rhyse has just
begun feeding therapy, and remains on Peptamen Jr. as his main source of
nutrients. Until two weeks ago, Rhyse was only taking in 8 -11 ounces per
24 hour period. When his intake suddenly changed to 24 ounces his development
also took a giant leap forward! He has become much more vocal, active and
instead of wanting to be carried everywhere he wants to use my fingers and
walk! A g-tube has been seriously considered to keep him on a steady
stream of nutrients, but his thrombocytopenia and JMML disqualify him as a good
candidate, except as a last resort. </span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<br /></div>
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<a href="http://2.bp.blogspot.com/-T16sDTB4L1o/UxOjl5_-iaI/AAAAAAAAACA/baMHAbYWArQ/s1600/DSCN3325.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-T16sDTB4L1o/UxOjl5_-iaI/AAAAAAAAACA/baMHAbYWArQ/s1600/DSCN3325.JPG" height="200" width="150" /></a><span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Rhyse’s platelets have
held steady all year in the 50-70K range (not great but not bad), and we only
had one ER trip last year, for dehydration. We keep Rhyse on a pulmacort
neb treatment daily to decrease his bronchial congestion (from aspirating), and
out of the public arena as much as possible to avoid at least some germ
exposure, especially during this terrible outbreak of an epic, flu virus.</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">I conclude this four part
series with these thoughts: be encouraged. For those who just received their
child’s diagnosis, or just wonder if they’re the “only one” who feels both joy
and upheaval on a daily basis — you are not alone! We truly are ALL
human, and do walk in similar paths as others. Never forget the
amazing joy it is to be a parent, no matter what. No matter the
good, no matter the bad. Every time I walk into the room to get
Rhyse out of bed, my heart still leaps with love for him. I don’t know
what he will go through, in his life going forward, but my husband and I pray
wisdom and strength over him daily. For all three kids, we have this
blessing EVERY single night, without fail. They repeat each phrase; “I
love you(repeat back to parent); I love you the whole world(repeat); I will
always love you (repeat); You are beautiful (I am beautiful); you are
gorgeous(I am gorgeous); I love you so much(repeat). May the Lord bless you and
keep you, may the Lord shine upon you and be gracious to you. May the Lord show
His favor and give you His peace!” I cannot wait for Rhyse to be able to
talk!</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<br /></div>
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</div>
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<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">Even before Rhyse was
born, from the moment I knew I was pregnant my little girls prayed this
blessing over him every night, laying hands on my belly. And I have no
doubt, Rhyse is BLESSED!</span><span style="font-family: Cambria, serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><br /></span></div>
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<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><br /></span></div>
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<span style="color: #45818e; font-family: "Cambria","serif"; font-size: 12.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><br /></span></div>
<br />
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<span style="font-family: inherit;"><b><span style="color: #45818e;">About the
Author: </span></b><span style="color: #45818e;">Jon and I have three
kids: Leah(9) who is adopted from Kenya, Maggey(6) and Rhyse(14 mos,PTNPII). We
live in Allendale, Michigan. Jon is a materials supervisor at a small HVaC
company, and I am a full time mom, working only four days a month as a CENA at
a local nursing home. We enjoy a very close family relationship, and have found
life with a NS baby even more enriching. The challenges are many, but we face
each one head on together!</span></span><span style="font-family: 'Times New Roman', serif; font-size: 13.5pt;"><o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;"><br /></span></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;"><br /></span></span></div>
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<span style="font-family: inherit;"><span style="color: #45818e;"><br /></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: Cambria, serif;">DISCLAIMER:<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: Cambria, serif;"><br />
The article above was written by a guest blogger. The opinions and ideas
written belong solely to the guest blogger. Noonan Syndrome Foundation DOES NOT
endorse political candidates and religion or religious preferences.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: Cambria, serif;">This
blog is provided for moral support purposes only. This blog is not a substitute
in any way for medical advice, diagnosis or treatment. Always seek the advice
of your physician or other qualified health provider with any questions you may
have regarding a medical condition. Never disregard professional medical advice
or delay in seeking it because of something you have learned from this blog.<o:p></o:p></span></div>
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</div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: Cambria, serif;">The
Foundation does not recommend or endorse any specific tests, treatments,
physicians, products, procedures, opinions or other information that may be
mentioned in this blog. Reliance on any information provided by the Foundation,
Foundation volunteers, staff or guest blogger/s is solely at your own risk. You
should not rely on information you receive from or through the blog for any
personal, medical or health decision, but should consult with a qualified
professional for specific information suited to your family member’s case.<o:p></o:p></span></div>
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