The Life Story of Hunter Yeider, so far...
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Hunter in 2nd grade
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Although my pregnancy with Hunter gave no indication of his illness, there were two occasions that I can't help but wonder if they caused some complication of some sort in his development. The first was a terrible case of food poisoning when I was about five months pregnant and the second was a horrible case of chicken pox when I was seven months pregnant. The various Dr's have assured us these mean nothing but to me are worth mentioning.
Hunter was born 53 weeks after his healthy big sister, Juniper. He was born naturally, quickly and came out with a 9.9 apgar which by all indications means a healthy baby....at first. His condition quickly deteriorated. He lost weight steadily, threw up all the time and was a miserable, sick baby. I tried desperately to breast feed him as I had Juni but to no avail. He could only take on ounce or so at a time so was just getting the watery stuff and not the fat that comes at the end. His bowels movements were like battery acid, burning holes in his flesh and they smelled just like baked bread. We, along with the Dr's, were frantic. We watched him waste away to barely nothing. He was switched to formula and I fed him constantly day and night to compensate for his constant vomiting. He was put on heavy doses of Propulsid which helped him keep enough food down for him to survive.
Our first pediatrician turned us in to Child Protective Services under the brilliant conclusion that the reason Hunter was starving to death was I was feeding Juniper and starving him. Oh Boy! CPS showed up at our door. We were exhausted, sick with worry and obviously very loving and devoted parents. Jeff and the guy ended up talking about fishing and the case was dismissed. The allegations stayed on our chart though, and continued to haunt us as comments were frequently made as we went from pediatrician to pediatrician seeking help for our sick little boy.
Finally we stumbled on a Dr that would listen to my husband who had a theory that this was possibly a metabolic problem where Hunter was not digesting his food. He ran some tests on Hunter and found extremely elevated liver enzymes. Fearing liver failure he called us up and sent us to have Hunter admitted to UCLA that afternoon. I spent the next 8 days sleeping on the chair next to Hunter as every test known to man was given to him. Panels of experts poked and prodded him. One interesting test showed his resting metabolic rate (he was actually asleep when it was done) was 2 1/2 times average for his age. He was taken off Propulsid for fear of liver damage and happily could eat enough to survive without it. He still threw up a lot, but mostly when ill when the vomit was a constant stream for days.
One unfortunate thing about these experts was that they had seen and treated Nicolas Leonetti for CDG in that same hospital. His parents went above and beyond the call of duty after Nicholas's death and made it their mission to educate the doctors on the symptoms of CDG to help raise awareness and hopefully increase the diagnosis rate of this rare and devastating disease. Apparantly none of these Drs had taken the time to read the info because we saw some of the same Dr's and Hunter was released undiagnosed, very sick and very emaciated.
Our pediatrician was very aware of Hunter's failure to thrive and continued to refer us to experts to seek out what was wrong with Hunter. We naively thought that once it was found there would be a treatment, a cure, a pill or a potion and we would be able to become a normal family doing normal family things. Such was not the case.
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Hunter playing the tunes
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On one trip to UCLA the Dr we were supposed to see was on vacation, so instead we saw Dr Anne Tournay, a quirky nuerologist. I pointed out Hunter's funny little butt, his knobby knees, his cross eyes which wandered at will all directions.
She gasped on inspecting "his funny little bum", told me to go to the cafe and kill a couple of hours. She bustled off to the library. Hunter and I sat and people watched, and waited hoping for an answer. He was 9 mos old.
Back in her office she handed me a volume of copied papers about a Scandinavian disease called CDG. She had seen a slide lecture three years previous on the disease at NIH. I read with horror about children, severly retarded with seizures and spider like bodies who never progressed beyond a crawl and usually died by the time they were 3. I cried hysterically all the way home to tell my husband.
Hunter's blood was sent to Belgium, to Dr Jaaken for confirmation of the suspicion. We waited week after week, hearing nothing. Not being computer people we didn't have one, didn't know how to "go online" or anything of the sort. We went to Best Buy and bought a system, emailed Dr Jaaken and waited. By 3am we had a response, Hunter had CDG. We found the CDG family Network and also found that our only help was "supportive therapy" and trying to help Hunter establish as much nuerological development as early as possible.
Therapy, Therapy, Therapy began. PT, OT, Speech Therapy you name it. We hotlapped it all over and it has paid off. The MOVE organization helped us get started and we learned so much about a world we had never known. We still hope Hunt can walk someday but for now at least, he depends on his Quickie Wheelchair. He is very smart and it helped to use sign language for simple communication. He picked up on it instantly and began to indicate when he wanted more and when he was all done. This helped immensely when he was sick so he could control his fluid intake and keep him from being so dehydrated. Hunter had Strabismus surgery at 1 which was successful in straightening his eyes. His motor skills improved and he looked so much more healthy it helped avoid the "What's wrong with him?" question I had come to dread from strangers. (We later found out that the earlier eye surgery is done, even on a small infant, the greater chances of success.)
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"The Hulk', who else?
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He is in 2nd grade now and is a very busy, outgoing, and popular student. He spends his time between special ed and his regular class. He gets very tired so needs to come home early frequently and rest. He plays sports on the computer, his favorites being Backyard Football and Backyard Baseball. He loves SpongeBob Squarepants and music. He fights with his big sister and is constantly challenging authority of all kinds. He is a wonderful, loving and spirited boy.
We will never be a normal family. Going camping is going to be a challenge but I'm sure we will do it. I reassure our daughter by telling her it's OK, even if Hunter was healthy we are not so normal anyway. I don't believe God chose us because we could handle it. I believe we chose to handle this gracefully because of our Faith in God. We have learned so much from Hunter. How to be patient, how to not expect things, how to be thankful for what we have instead of always wanting more, but most of all what true courage is, and all that know Hunter know that Hunter is full of courage.
The Yeider Family
email yeidz@aol.com
eff: 02/21/05