[tri-med] Re: Baby Faith and surgery

HI, Wendy. I'm Nan and welcome to the list. I am here because of my son 
Dominick. He has Trisomy 18 Mosaic. We adopted him when he was two years old 
and he turned 19 this past September. Dom has done extremely well. He 
completed his high school program this past June and is now working part time 
in a YMCA child care program. He was attending a child development class at a 
local junior college, but since he has some rather significant learning 
disabilities, reading being one of them, he has decided not to finish this 
semester. He is in the process of getting a room mate and an apartment 
through an agency that provides supported independent living. The agency is 
doing a living skills assessment right now and based on what the results are 
is what level of help he will need to get into an apartment. He will have to 
eventually get a full time job, and I think the day will come when he will be 
able to pretty much take care of himself. 

Dom was born with a club foot, club hand VSD and he developed idiopathic 
scoliosis. His scoliosis has been corrected as much as it can be by a spinal 
fusion and Harrington rods to keep his spine save. His foot was corrected 
when he was an infant and he has also had several surgeries to correct and 
improve function of his right hand. His VSD has never caused any problems. 
His prognosis at birth was the same as anyone other T 18 child. By the time 
he came into our home at 21 months, he was obviously doing much better than 
anyone had ever expected, but I was still told by a pediatrician to not 
expect too much and he in fact tried to talk us out of adopting him. 

This summer we attended the SOFT conference and Dom had a chance to talk to 
several doctors during the clinics. Dom's question to them was, "Why haven't 
other doctors made sure that kids with foot problems get them corrected the 
way my doctors did. Do they think they will never walk? What if someone had 
thought that about me? " That was one very concrete area that he could see 
and identify with and I think that any of the doctors he talked to have a 
whole new idea of what is appropriate intervention for our Trisomy kids. 

I wish you the best and you have come to the right place for love and 
support. Whatever happens, everyone here on the list will be here for 
anything you need.

Nan---Mom to Dom, 19; Tri18 Mosaic, Bipolar Disorder and Ali, 19; Autism, TS, 
ADHD 
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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