About Me
- AydenAva
- I am 4 years old & I came into the world early .I was taken to a different hospital because I couldnt breathe.At this hospital I was diagnosed with severe Spondyloepipseal dysplasia congenita,Dwarfism.I needed a tube to eat & breathe.I have gone through 15 surgeries & kicked butt everytime.Mommy says I'm the toughest kid she knows.I was really sick for 3 years so my Mommy & Daddy took me to Cincinnati Childrens Hospital & they made me all better.In May 2008 Dr. Cotton in cincinnati took my rib cartalidge out & put it into my trachea & took my trachy out,now I can breathe all by myself!!!Since getting my trachy out,I went to the beach for my first time ever!!,I had so much fun building venom sand castles.& I got to go camping & fishing & touch a real frog!!!I have another big surgery to go,a third of my stomach is in my chest cavity & sometimes gives me a tummy ache,but mommy & daddy tell me how brave I am,so I know I can overcome anything,just like a real superhero!!.......................SED congenita,tracheomalacia,nissen & G-T,Trach,paraesophegeal hirnea,C-spine instabilities.RESOLVED laringeal,bronco malacia,pierre robin sequence,cleft palate,retching
2 comments:
Oh yes! My son, Val Dean's tummy is always distended. He would wear a much smaller shirt if his tummy was not so big. I asked the mother of the adult SED man and she said when he was little he had this problem, but as an adult he does not really anymore. The little girl does not but she is so small and under weight I am not surprised. The 8 year old boy does a little. I always mean to ask if it was worse when he was younger, but I always seem to forget. I have so many questions when we see them. Soon he will see a pediatric gastroenterologist to try and figure this out. I have noticed that when he throws up he still has food particles from things he ate two days before. this leads me to believe that he just has poor digestion and the food is not moved through easily. I will let you know what they determine after I see them. My son has horrible eyesight as well. We had to get new glasses (this is number 5) because his head is so large. Apparently in the size he needs they don't have the cable arms that wrap around his ears. Now that they are straight he can’t keep them on his head and he absolutely hates the band the ties the two sides together. Because of this he refuses to wear his glasses even though his prescription is -10 in both eyes. What is Ayden's? Did you struggle with him to wear them? It's a constant fight which usually ends with him breaking them. He has to have his neck fused because in November my husband went off a curb too hard in the stroller and his neck collapsed. At the time the Doctors did not believe he had enough neck bone to safely complete the surgery. They are going to check him out again next month. The neurosurgeon say’s he really needs the neck surgery soon but it’s too risky at his young age. The difficult part about waiting is that he has to stay in a neck brace until the surgery is completed. We can take it off to bath him, feed him, and sleep, but other than those time he is supposed to wear it. Again another constant battle. If we are home alone with no other children around doing calm activities I don’t make him wear it, but I probably should. The neurosurgeon here In Salt Lake City @ Primary Children’s Hospital says that he specializes in abnormal neck surgeries and reports that he is the very best and no matter where we lived in the country he would most likely be the recommended doctor for such a procedure but it’s hard to really know if that accurate. Val Dean’s doctors are all so arrogant, nice but arrogant. We also feel so lucky to have our soon. He is just so much fun. I have been trying to talk my husband into adopting another little person, but no luck yet. He thinks we lucked out on Val Dean not needing too many medical procedures and that most likely won’t happen again. Did you know Ayden was going to have a type of Dwarfism before birth?
PS- My email Address is Brookedalling@gmail.com if you would rather reply that way.
Look forward to hearing from you!
Hi there! I love this pic of Ayden. I showed Val Dean the picture and he said “it’s Val Dean”. I noticed that your blog was linked to my friend Chelsea’s son’s blog (Kai). I met her a few years ago while our husbands were in school, before we had our sons. So your son had the acid reflux surgery. Val Dean’s doctors are recommending that he has the surgery, but I have been scared to do it. They say they can never throw-up or burp again. Whenever he has the upper GI they say the reflux is horrible, however he doesn’t seem to be too bothered by it. The 8 year old boy does have a little curving of his spine (sway back). But it’s not too bad as of now. Has your son’s growth been steady? My son grew most of his height by 6 months, but has not really grown much since. Have you ever gone to any of the conventions? Hope all is well.
Brooke and Val Dean
Post a Comment