Re: New to the Group-- Oops!

[Guest guest]

Sorry Terri!

I was reading your username and reading little Grace's name and

called you Grace! Too early in the morning and not enough coffee

yet, lol, sorry!

Leah, mom to , almost 11 and

Olivia, 6 yrs, 23lbs, 36 " , RSS, OI

> >

> > 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)

> >

>