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:
Hi my name is Brooke. I came across your blog by a google search looking for children that have SED. My son is 2 and also has SED. It's always nice to have contacts of others in the same boat. Your son sounds like a real trooper and is so adorable. My son has been lucky and has not had as many medical problems as most other SED kids. Next month he will have to get his neck fused but that will be his first surgery. Has your son had this surgery?
Hi ,Im Angie,your family is beautifull!I have never seen another child with SED before,so Im so happy you found my blog.Sounds like hes been doing great,as far as the C-spine thing goes,Aydens is stable to the point where he doesnt need surgery for that,but we are followed by a nerosergeon in buffalo & cincinnati.He can never play contact sports(obviousley)& he gets yearly MRIs too make shure his spine is stable.His c-spine issues are kinda like a chiari malformation,but hes not quite there yet & hopefully will never be.How tall is your little guy?if you dont mind me asking.Aydens SED diagnoses was questioned because he soo small,so our hospital sent all of Aydens info to johns hokins & there top team went over everything & it came back that he has a severe form of it,severe meaning his max height will only be 3 feet.Hes 25 in tall now & 19 lbs,hes been 25 in since he was two.Surgery is a very scary thing but Aydens had 16 so far & hes always done great,good luck to Val Dean & anymore questions are welcome.Aydens noticing the size difference now ,but hes 5 & hes swears he knows everything!Weve had lots of conversations about it already but hes still to young to fully get it.He has gotten upset a few times,on his 5 th b-day he said "mom,does my face look different?" & I told him "yea you look older" & he looked in the mirror & started crying,saying" I look the same!" & I didnt get it untill he said"why does Evan (his cousin) get bigger & I stay the same!".So its getting tougher to explain & if you say"God makes everyone different"he gets mad he doenst want to be different,hes still to young to be ok with it,ya know?........Angie
Thank you for responding. I have not seen very many other SED children either. In our local LPA there are two other cjildren with SED and one adult. A 6 year old boy and 3 year old girl. Their medical problems are similar, how ever the girl is much more severe. She does not talk or walk she has a g-tube and is still on oxygen. She is 21 inches lond and weighs 13 lbs. The boy is so adorable, he has such a cute personality. He calls my little boy "little me". He was on oxygen until three and walked at three as well. He also have severe myopia. He seems to be a little under 3 feet and has not grown since he was about four. He has such a great self worth. He told his mom this year when school started that it's hard to be so popular at school, everyone wants to play with me. I hope my son is as happy with himself at 8 as this boys is. My son is 27 inches and weighs 21 lbs. He has not grown very much the past year he was 18 inches at birth and grew the majority of his height by about seven months. I have made contact with the the mother of the adult (age 29) with SED. She has been very helpful when necessary I have called her for advice. Your son is so adorable. I am worried for the day my son realizes he is different. Right now he is starting to get frusterated with tasks he can't perform, like reaching objects, climbing up on things, or reaching door knobs. All his friends and cousins are tall even for their age. My family is really tall. I am 5'11 and my brothers are 6'4 and 6'6. So he is sorta at a disadvantage that way. On the other hand his is everones favorite. He is spoiled rotten by everyone he knows. Do you go to Cincinatti because that is where your doctors reccomend?
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