For those of you who don't know me - probably most of you don't know me- i am an old timer and and haven't been around lately- too much going on and too stressed I am the one who requested that the special needs forum be started here at TC.
I am curious what special needs your kids have ?

All three of my kids have had medical problems and many many years of OT and PT but one son- Braden has had very severe problems. He is doing well considering the severity of his problems (was given pretty much no hope of survivng..)
He has short bowel syndrome (3/4 + of his small bowel removed) and no ileocecal valve- the result of NEC
he has liver disease (PSC) as a consequence of ongoing bacterial overgrowth problems
he also has an immune deficiency that requires him to get monthly immunoglobulin infusions
he has the FAP (familial polyposis) gene that guarantees colon cancer at some point and puts him at high risk for other GI cancers
he has pancreatic insufficiency
osteopenia
he is gtube dependant for his nutrition (he does eat during the day but doesn't seem to absorb the food at all)
doctors are disagreeing about the timing of the need for intestinal/liver transplants.....
the list goes on and there is constant balancing act

oh and my kids are 11 years old and I am smack dab in the middle of tweendom....much more challenging than I had imagined !!!

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

I have BGGB quads born at 31 weeks 5 days. My daughter, Katie (also my surprise Quadruplet!), has a G tube. Luckily, she is doing very, very well and only requires the tube at night-12 hours while she sleeps. She has tracheamalacia, caused by a congenital heart defect "Double ARched Aorta" at birth. Again, luckily the defect was corrected and resolved. However, this defect did cause her tracheamalacia, basically she aspirates on thin liquids. We do feed her regularly during hte day, just no thin liquids. She eats just like the rest of them. (french toast, hot dogs, chicken nuggets, applesauce) We are hoping the G tube will come out sooner than later.
Also, my son, Matthew, had NEC in the NICU, treated with antibiotics. However, he did require surgery in April, to take out about 10 inches of his bowel. He has had some problems gaining weight, and he is still my "peanut" of the group. We are working withthe GI doc and NUtritionist to help him gain weight.

We do have EI come out 1x/mo for Katie just to track her progress, and 1x/wk for Matthew for expressive communication. But he is doing great. He just said "mama" the other day for the first time.
We are fortunate that all four babies have no developmental delays and are developing right on track.

Single Mama to 7 kids
Nicky (8); Marc (18); Lexi (15)
BGGB 31 weeks 5 days
www.wilkequads.blogspot.com
http://lilypie.com>