I'm Mom of 18 yr old RSS girl

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18 years ago I gave birth to a 4lb 4 oz baby girl- full term- by

C-section. The docs said IUGR and placental difficiancy. We tested her

many times over the years and she was never a candidate for GH. She

was 14lbs at 1 yr, 17lbs at 2yrs and 21lbs at 3 yrs... way under the

normal growth pecentile however she had steady growth- until about 5th

grade. She reached her full height potential at 4ft.6inches. Health

wise she suffered from chronic ear infections, annual croup and

lactose intolarance. Over the past few years we have also discovered a

kidney " issue " - not pin-pointed by the nephrologist or the

hemotologist- which looks like added calcium in the blood, elevated

platelet counts, and trace blood in the urine. Testing revealed a

" malformed duct " in the kidney that may be the cause- or possibly it

could be a hormone/calcium cause. She takes Prevacid OTC daily for

her " big-time heartburn. " She had learning disabilities that were

addressed through the school system (IEP)after I lobbied for the

support. The school approved services all the way through her senior

year after I got a doctors note to prove she had a medical condition.

This support was a GODSEND- I HIGHLY RECCOMEND that parents take the

initiative to get their kids into the special ed. program in their

schools. My Rochele received an extra set of books at home and an

extra textbook in each of her classes so she didnt have to carry those

heavy books on her back. Along with the academic support- the

emotional support that she received from the individualized attention

of a resource teacher gave her great confidence for success. She has

since graduated HS and she is in college to become a teacher herself.

She sees eye to eye with kids and that makes for a natural connection.

Socially, Rochele was VERY POPULAR in school because of her size.

Everyone knew her because she looked different. No one ever picked on

her or bullied her because she has an excellent sense of self-worth.

God made her this way-and only He knows what blessings he has in store

for her - she walks everyday expecting God to use her- and He does!

She has struggled with her weight since 6th grade. Fat was condensed

in the hips and lower back area. Because this made her look like she

had and ENORMOUS rear end (size 11 jeans) this put great strain on her

lower back and ankles. She had liposuction in her senior year of

school and they removed 9 lbs of fat from her lower back and hips.

(above the buttock area). This made her appear much more

proportionate. It was well worth the results- we never realized that

she was NEVER able to sleep on her back- her entire life. now she can

lay flat on her back and she can run- things she couldn't do before.

She is now in a size 8/9 short jeans.

Insurance did not cover the surgery although it was definately health

related. Nothing in literature connected it to RSS.

Another thing that changed as she grew was that squeeky voice. She no

longer has it.

i will send in her senior picture. She had all of the obvious RSS

signs as a baby (triangle face, down-turned mouth, curved fingers,

webbed toes, large forehead etc.) But boy oh boy did she grow from an

adorable little baby to a knock out young lady. Shes a living doll,

even today.

JoAnn-Mom of Rochele- 18yrs-RSS and 15 yrs-non-RSS

By the way my email address is ATM795@... not the yahoo address.