Nona

[Guest guest]

Dear Nona,

Welcome to the list!! We have not done the chromosome test, I know that

several people on the list have. I also know that you can be negative on

the chromosome test and still be very CHARGE ) Our son is now 16 1/2

years old.

At the age your son Nick is now I would have described as having been

born with a tracheo-esophageal fistulas, esophageal atresia, patent ductus

arteriosis, possible small retinal colobomas, misshapen ears, micro penis

and testes. He had his esophagus and trachea repaired, his patent ductus

ligated, had a tracheotomy and gastrostomy placed for aspiration, had

laryngoscopy-bronchoscopy-eshophagoscopy-dilatation procedures every four to

six weeks for what seemed like forever. He had tracheal stenosis and

stricturing of the esophagus post repair, growth and developmental

retardation, sensory integration disorders, moderate to severe low tone

issues, chronic dysphagia, reflux, asthma, allergies and upper respiratory

infections. He was in early childhood programs with PT, OT, ST and a case

coordinator for every agency I never knew of before.

Now when I describe I would say he is a Junior in High School. He is

19th in a class of 270 at his magnet school for Technology and the Fine

Arts. He has bilateral behind the ear aids and a full time sign language

interpreter and is fully mainstreamed. He speaks (nearly intelligibly

o) ) and writes in English word order. Medically I would say has a

gastrostomy tube for feeding, a Milwaukee brace for scoliosis and kyphosis,

and eyeglasses for nearsightedness. He takes Prilosec daily for reflux,

daily genotropin injections and monthly testosterone injections for

deficient growth hormones.

His medical history is that he was in the NICU for nine weeks,

rehospitalized once at age three for pneumonia. His surgeries include (in

order) gastrostomy, tracheo-esophageal fistula and esophageal atresia

repair, PDA ligation, tracheotomy, multiple LBE's with multiple PE tubes,

orchiopexy and closure of the persistent fistula post tracheotomy

decannulation.

Everything about your son sounds both normal and wonderful and much better

than it was for us )

We didn't start growth hormone replacement therapy until three years ago

( was 13). He has grown ten inches in the three years we have been

using the injections. Prior to the injections, his growth slowed to 2.2 cm

a year (less than an inch).

Please feel free to ask any questions )

Best of everything to you and your family-

Yuka

p.s. Photos can be viewed at :

http://www.imagestation.com/album/?id=2117043995