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
3 comments:
What a handsome boy! I have a 5 yr. old son with a form of dwarfism called Russell Silver Syndrome. We are blessed that he has no major complications. My mother works at the Olean Medical Group and thought I should contact you. I would really enjoy talking with you if you're interested. We live in Wellsville, NY and my name is Jeanie Kostun
It's has been so long since I have contacted you. Ayden looks great. I wish our little guys could meet. Hope things are going well for you guys.
Val Dean is now almost 33 inches. He was 28 in May. His thigh bones seems to be what grew the most. We are excited. It's funny.... my husband still thinks there is a chance he will grow to be average height. He says, see i told you he would grow. lol. For me it's great either way. Sometimes I like that he is small.... it seem like he wouldn't be himself if he were taller. Other times I think about how hard adolescence will be for them. I just cry thinking of how others may be impolite, stare, laugh, or even be out right rude.
Val Dean has told me a number of times lately that he is going to be tall like mommy and his uncles Brayden, Brett, Brandon and Matt. My brothers are so tall. They are all over 6 feet and I am about that myself. He says, "tomorrow I will be tall okay mommy." Other days he'll say, "I am short huh?"
He is obsessed with moving the chairs and all other portable furniture around the house to get doors open. I really need to get the puppy steps. It's just that at his age I don't want him getting on the counter or in drawers, or opening doors. But I know it's age appropriate so I have to let him try a little.
Yes he had his 1st,2nd,and 3rd vertebrae fused. His neurosurgeon said it was too unstable to go any longer. He was really nervous to preform the surgery because he was so young and so small. After it was over he told us his neck instability was much worse than he ever could have imagined and the vertebrae were far more deformed than he originally thought. In the end it was a miracle it turned out so well. It is fusing a lot slower than they would like so the neck brace needs to be worn for a little longer. We will see this month if he can officially stop wearing it. I don't make him wear it at home all the time. Although I probably should.
So good to hear from you!
Brooke
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