Re: is there any one from Indiana?

[Guest guest]

Hi Donna,

Yes there are some people on this list from Indiana and Illinois.

Hopefully they will see your message soon and get in touch with you.

Ken M

>

> hi,

> my daughter eva is RSS and also diagnosed w/ pituary drawfism.

> i was hoping that there wee some others that might be close to us

that

> she and i could talk to. she is 6 now and we foung olut 31/2 /years

> ago. she was a preemie. we have been on ght since we found out. i

> have been on this site for about the same amount of time. i must say

> the pics help her understand that she is not alone. she is a little

> spitfire and does'nt seem to let her size stop her from doing

whatever

> she wants. we are in southern indiana. and go to rilet's for endo.

> thanks,

> donna

> mom of eva, 6yrs., 39 ins,. 30lbs, RSS

> jad 17, jasmin 11, mikey 4.

>

[Guest guest]

Hi Donna!!

I love to hear how many of us are in Indiana!! And lucky, we are so close to

Chicago for the conventions. We just found out Dasia has RSS in August, she's

20mo. We live just outside Indy, in Plainfield. Where are you? There is another

family in this county who's daughter is 5, Abby. Her mom Amy says there are 2

other families in IN, I think Jefferson, and....

I can't remember. If you've been on this site you might be one of the ones she

was talking about. I haven't met her yet, she's a busy lady. I'm pretty new at

this, and Dasia is younger, but I'd still love to get to know any nearby

families! I was planning on not meeting any other RSS children until next years

convention, but I think that would be great if all of us in IN could get

together for a day. My other kids are around the same age as yours, I also have

a 6 year old daughter Avery, and a 3 year old son Jaden. One of the families

here in IN has a little boy named Coby, I'm not sure how old he is. But if

you're interested I can find out more details about the other families, and

maybe even contact info.

bluesunshine1966 wrote:

hi,

my daughter eva is RSS and also diagnosed w/ pituary drawfism.

i was hoping that there wee some others that might be close to us that

she and i could talk to. she is 6 now and we foung olut 31/2 /years

ago. she was a preemie. we have been on ght since we found out. i

have been on this site for about the same amount of time. i must say

the pics help her understand that she is not alone. she is a little

spitfire and does'nt seem to let her size stop her from doing whatever

she wants. we are in southern indiana. and go to rilet's for endo.

thanks,

donna

mom of eva, 6yrs., 39 ins,. 30lbs, RSS

jad 17, jasmin 11, mikey 4.

[Guest guest]

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

---------------------------------

Yahoo! FareChase - Search multiple travel sites in one click.

[Guest guest]

Hi,

I'm le, or better known as Coby's mom. lol Coby just turned

3 yrs old and he has RSS, protein S deficiency, and we believe

sensory integration disorder. We have been a member of MAGIC and

this message board sense having Coby. He was diagnosed at 2 days

old by our gene, Dr. Escobar at St. 's. Our endo, Dr. Riggs,

is at St. 's as well. Coby is a twin and they were taken by

c-section at 36 wks. Coby only weighed 2.4 lbs and came home from

the hospital 29 days later weighing a mere 3.12 lbs. He was over 3

months old before he could even wear preemie cloths.

Anyways, we are in central Indiana. Outside of n, between

Muncie and Kokomo. I know a few other families here in Indiana.

The Green's are in Yorktown, they also have twins and just one twin

is affected and he is 4. le has a 1 yr old and they are in

. Amy in Indianapolis has been mentioned. There are also

families in Greenfield, Greenwood, Elkhart, Versailles, Wabash,

Warsaw, and 2 families in Noblesville. This are just a few that I

am coming up with off the top of my head.

I invited everyone in Indiana to come to our walk for MAGIC that

took place in Sept. Amy normally has a benefit dinner in the spring

as well. All our great times to get aquainted. I would love to do

something a little less formal as well. We have a great park in the

little town that I live in. I would love to have a good out next

summer and have everyone come. I'm up for anything.

Hopefully you are a member of MAGIC and they have a networking

list. It gives all the families information and what state they are

from.

My home number is and my cell is (Verizon)

and e-mail greyeyedcutie @yahoo.com (no space). Yell at me

anytime. I would love to chat. Take care…

le, mom to:

Shye 11, Brock 9, Coby (rss) & Carlee 3 yr old twins