Re: Chat; is there any one from Indiana?

[Guest guest]

Hi Again Donna!

Wow, what a great story! Sounds like you have a very special little girl that

everyone is in love with. Personally, I have seen this experience as a blessing,

to be the mother of such a special child. It has taught me a lot about myself.

Can you believe how many families le said live in Indiana?! Ya know, I

really believe this is because RSS goes undiagnosed. I was told SGA, and short

stature, the whole time by doctors in 2 different states, until her PT said I

should see a geneticist that she knew, and get a diagnosis, so she referred me

to Dr. Escobar, and I think he is so good at what he does, and not every state

has such a great devel. ped., genetecist. Small towns don't have them, and

people probably aren't referred to one as much as needed, I wasn't, it was SGA,

and she would be petite. They tested for Down Syndrome after birth, and it ended

there. I wonder how many of these kids in Indiana were diagnosed by Dr. Escobar.

I'm glad we landed here in IN, we love

Plainfield. This is the 7th state we've lived in, we were traveling with my

husbands work, building power plants, chemical plants, and oil refineries. And

once our daughter Avery was to start school we wanted to plant ourselves

permanently, and Bedford, IN was the last plant he worked on. So we moved to the

nearest bigger city, and here we are. Both our families were travelers, so

there's no place to really call home and our families are scattered across the

US.

Yeah, we'll definitely have to get together. I have your email written

down, and I will be in touch. Hopefully more of us that are around too. Anyone

else who would like to join, let us know. I know holiday season can be hectic,

and I'm not sure what we could come up with during winter months, or if spring

would be better? Any ideas? I'm so new at this! Love to hear from you!

Donna wrote:

in reply to dasia's mom jessica. i'm in madison, which is jefferson co. we are

about a hour and half \south of indy. i think it wold be great to get together.

a saturday would be best. as i'm in a battle w/ her dad i only have her every

other weekend. . is there someone else from madison or close. i have heard of

another child that is supposed to be here but they don't know if she is RSS.

it's a small town and everybody knows everything or at least they like to think

they do. eva is quite well known . as i was a hairdresser in a very busy salon

when i had her. and i bought her clothes in the toy dept. at wal-mart for the

first year of her life. her dad also works in a factory and they had raffles

and such to raise money for her medical bills. we have been very blessed by the

community. she is known whereever we go here. some people i have no idea who

they are. but wal-mart started speacial ordering things for us i.e.

diapers,clothes, formulas,etc. the hospital is now

equipped w/ equipment that can take care of preemies under 5lbs. she broke them

in in the er her 1st day home. lol. they had never seen a 4lb. 15 in. baby

alive before. no needles or oxygen mask would fit. they were made for the

bigguns. she is also one of the first 24 weekers to survive in this county.

she is a fighter. and the story gets a bit lengthy from there. if you don't

like the answer you get. just keep on looking. don't settle for one drs.

opinon. go w/ your gut. your the mom you know more than them what your child

has going on. we managed to get a referal to Dr. Fuqua at riley's and he is

great and has common sense. he siad that eva is RSS but needed GH tests. after

doing it. he siad that she had the lowest that he had ever seen. her body only

produces 1 and not much of that. dad did'nt want to do the treatment. Doc

looked at him and said. " look when she is 20 and is only 3 feet tall, which is

the tallest that she will possibly get at the best, do you

want to tell her why you did'nt want to give her the oppurtunity to grow? "

well, dad just about fell out of his chair. that did it. the rest is history.

we are hoping for 4'6 " . so far so good. Little People of America is a good

source if you don;t know about them. they are online. if you want to e-mail me

direct please do so. and im on yahoo messenger as bluesunshine1966@....

ttfn,

donna

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