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!
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!
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.
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?
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!
I arrived at the hospital dilated to 7 and moving along fast...and in intense pain. At 11:21am Rhyse Addyson Cole was born.
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.
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.
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.
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
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.
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.
The failed feedings continued until late in the evening increasing my anxiety, but midnight was fast approaching and I was beat with emotion.
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.
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."
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
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.
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."
The doctor walked out of the room and I never saw him again. His shift was over.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
With postpartem hormones flailing about wildly I couldn't contain my emotions. I was a weepy mess.
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."
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.
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.
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.
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.
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?
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.
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.
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."
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!
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.
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.
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!
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!
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.
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.
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.
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 enormous 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.
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.
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.
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.
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!
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.
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.
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.
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.
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 transfusion, was changing the 2x2. That was a night to remember.
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.
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.
Around 9pm that night the nurses finally got the OK to pull the line the rest of the way out. The bleeding stopped.
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!
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.
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!
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.
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.
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.
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!
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.
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.
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.
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.
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!
Update January 2013:
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.
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.
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!
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!
About the Author: 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!
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.
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