New to List and would like information on fundraising for convention

[Guest guest]

Hi, everyone!

I'm new to posting to this list, however I have been reading all the

messages and love all the support.

My daughter, was born 8 weeks early with IUGR weighing only

1lb 13 oz and was 13 inches long. She was in the hospital for 3

months because of the reflux. Before she came home she had a

fundoplication and a feeding tube inserted. When I got her home I

started noticing that there were other things going on the hospital

didn't catch. I got really lucky with our home health nurse. She

knew something was not quite right with either because of

her not eating, reflux about 6 times a day, not gaining weight and

the assymetry of her head, legs and jaw. We researched and she

finally found the information on RSS. Of course, I went with it and

got an almost immediate diagnosis when was only 6 months

old. We've been to two different genetics doctors, endocrinolists,

gastro doctors and now go to shriners for her leg assymetry.

I'm very lucky that I have had so good luck with the doctors who

treat her, but as every one of you probably already knows, you have

to do all the legwork and research in order to get the care that

your RSS child needs. Hardly anyone in my area has even heard of

RSS.

I am interested in going to the convention in July and would like to

know what others are doing to raise money.

Tammy Mayeaux

Mom to - 19 months, RSS starts growth hormone June 9,2005 and

6 years ADHD, idiopathic short stature and soon to be starting

growth hormone.

[Guest guest]

Welcome aboard. I'm sure you know what a great place

of support you have found.

B

5 1/2 and Kelli 2 3/4

--- t_mayeaux wrote:

> Hi, everyone!

>

> I'm new to posting to this list, however I have been

> reading all the

> messages and love all the support.

>

> My daughter, was born 8 weeks early with

> IUGR weighing only

> 1lb 13 oz and was 13 inches long. She was in the

> hospital for 3

> months because of the reflux. Before she came home

> she had a

> fundoplication and a feeding tube inserted. When I

> got her home I

> started noticing that there were other things going

> on the hospital

> didn't catch. I got really lucky with our home

> health nurse. She

> knew something was not quite right with

> either because of

> her not eating, reflux about 6 times a day, not

> gaining weight and

> the assymetry of her head, legs and jaw. We

> researched and she

> finally found the information on RSS. Of course, I

> went with it and

> got an almost immediate diagnosis when was

> only 6 months

> old. We've been to two different genetics doctors,

> endocrinolists,

> gastro doctors and now go to shriners for her leg

> assymetry.

>

> I'm very lucky that I have had so good luck with

> the doctors who

> treat her, but as every one of you probably already

> knows, you have

> to do all the legwork and research in order to get

> the care that

> your RSS child needs. Hardly anyone in my area has

> even heard of

> RSS.

>

> I am interested in going to the convention in July

> and would like to

> know what others are doing to raise money.

>

> Tammy Mayeaux

> Mom to - 19 months, RSS starts growth hormone

> June 9,2005 and

> 6 years ADHD, idiopathic short stature and

> soon to be starting

> growth hormone.

>

>

>

>

>

>

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