Re: New to the Group --> Beth

February 21, 2006

Hi there,

I just took a look at your girls pics..... All three are Beauties,

wow!! You must be so proud of them.

Leah, mom to , almost 11 and

Olivia, 6.25 yrs, 23lbs, 36 " , RSS, OI

>

> Welcome!! I also have twin girls (identical) that are 23 months

old. Sydney and Leah were born 8 weeks early and Sydney was 2p

11oz and Leah was 4p 8oz. Sydney was just received a diagnosis of

RSS a few weeks ago so this is all new to me as well. We have

struggled with feeding issues since day one with Sydney and while we

ended up not having to use a feeding tube we came very close on

several occassions.

>

> She is eating much better now but still hasn't cracked 20 pounds

yet. We are hoping to reach that milestone before her 2nd

birthday. Her sister is about 28-29 pounds so there is quite a

difference between them. I have posted their pictures on the web

site - there is a huge difference in size.

>

> We haven't started GHT yet, we have our first appointment with our

endo in April so I am not sure what she will recommend.

>

> It is hard sometimes watching one twin develop so " normally " while

the other faces so many challenges but Sydney is a total spitfire

and is a real fighter. I think all of these challenges have given

her a tenaciousness that will serve her very well in her life. No

matter what is put in front of her she just keep plugging away.

>

> Welcome to the group. It is a great place to ask questions and

learn lots of information from other parents who have already been

down this road.

>

> 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)

>

February 22, 2006

Thanks Leah. It was a bit crazy having them so close together but now that

Sydney is walking (as of January) they all play together so well.

How has handled all of the extra attention on Olivia? One of the things

I always struggle with is how to make sure that Sydney gets all of the extra

work that she needs (physio/speech) but making sure that the other girls don't

resent it and get their fair share.

Beth

New to the Group

>