New to the Group

[Guest guest]

Hi, I am new to the group, just wanted to introduce myself and

daughter. I have twin girls born 1/28/03: Grace and Alivia. They

were 5 weeks early, but very small especially Grace: 3 1/2 lbs and 14

3/4 in. Immediatly the docs brought in genetics, but no one knew what

was wrong: big head, webbed toes, incurved fingers, small triangle

face. We went home, Grace wouldn't eat. We forced milk in her, she

puked. PT and OT were started. She wasn't growing, couldn't lift her

head. Finally switching peds, we got referred to Univ. of MI Genetics

and Endo. They came up with RSS, got g-tube May'04, tested negative

for RSS as most do, started GHT March '05. She has grown 4 1/4 in.

and 3 1/2 lbs in 9 mths which is so huge. Now what? We have stopped

using g-tube as of Jan. '06, but am not sure if that is right

decision. Average cal. a day is about 846 w/out tube. My nutrionist

has made little effort to help,has no opinion on using/ not using

tube. I don't know what else to do for her or if we are missing

something. Any advice on other areas to look into or docs?

Sincerely, Terri Tippman( mom of Grace RSS, 36 1/2 mths,

21 lbs, 31 1/4 in, GHT)