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Re: Re: New to the Group-Terri

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Terri,

I saw the pictures that you posted. The girls are beautiful. I am so sure that

you get the same reaction we do - they can't be twins. I remember I was at a

store when they were about 8 months old (Sydney hadn't reached 10 pounds at that

point) and someone stopped me and said that I was brave to have children that

close together. I told them that they were twins and the woman wouldn't believe

me.

It was so nice to see the picture of Grace on a bike. Now that Sydney has just

started to walk, it is so great to see that she will be able to do the other

things that her sister can do.

Beth

New to the Group

>

>

> 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)

>

>

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