New to group

[Guest guest]

Hello,

I would like to introduce myself. I am Jackie mother to who is 4

going to be 5 next month.. She was a preemie at 7 months born at only one

pound 10 ounces and 12 inches long. We had a rough ride in the NICU and the

first two years after with multiple infections, mostly lung etc. When she

was around 18 months to two the diagnosis of RSS was made after a visit to

the geneticist and several tests as well as the endocrinologist. She now is

39 " and 26 pounds. She is very petite but eats like a horse!!!! She has

the asymmetry of her legs but no real leg length discrepancy. She has the

blue sclerae, curved fifth digits. We have to have kidney ultrsounds q6

months. All in all this is not the worst that could have ever happened,

however, I worry all the time about her being made fun of because of her

short stature, her legs being different sizes around etc. My family tells

me I am the only one who notices because I am looking for it but I don't

know it is pretty obvious.

Her father and I also made the decision not to give her growth hormone

injections as it just didn't make me feel comfortable with all of the side

effects and the benefits did not out weigh the risks for us. I don't know

if I would have come to the same decision if this was a boy child however.

Our problem now is getting shoes, her one foot needs a size 9 one needs a

9.5. I knew of a website at one time but have since forgotten. Anyone

with info and support please write!!! Also any new treatments out there

that I am unaware of besides the growth hormone .

Thanks for having a support group for this as there is no one else I know

of with this syndrome.

Jackie Aguilar

Database Administrator

SwedishAmerican Hospital

1401 E. State Street

Rockford, I L 61104