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Re: [Fwd: Thanks Giving]

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Hi, ! I haven't " spoken " to you in a very long time! I'm so glad you

are now part of this onelist. I am also thrilled to hear about . 105

and 5'7 " ?!!! Wow! You must be so happy!

Max is doing well for the most part. His RSS is under control, although he

is not achieving the height that has. He is 11 now and just about

4'5 " . His weight was 72 pounds, I believe. As you know, Dr. H. does not

like it when we talk in pounds and inches. Doris was kind enough to

" translate " for us.

I don't remember....Does have any asymmetry? (I think I spelled that

wrong.) Max seems to have some that is becoming more pronounced as he is

getting older. No one else would notice, just Mom who is always checking.

But there is a definite difference between right and left. The right

shoulder is just a bit lower than the left, he puts his right foot on a book

before he gets measured, and we see evidence when he is undressed and

trotting around the house in his underwear. As long as it does not bother

Max, we won't make anything out of it. What about early puberty? Did you

have to go the Lupron route? I don't know how much Dr. H. has told you, but

Max does not use that. He uses Zoladex, a drug that she heard about from

someone in South Africa that comes here to see her. It's great. Max only

has it replaced once every three months - at each check-up in NYC.

I don't know if Dr. H. told you, but I have gone back to work full-time. I

am a reading specialist at a school for children with learning difficulties.

It is a small school from grades 1-8; only 82 kids. It is the job I always

knew would someday be there for me. Max attends the school, too. Jenna,

our 14 year old, is now in high school and doing what all 14 year old girls

do best - nagging her parents.

Anyway, I don't want to take up anymore time on this list to carry on about

old times. I am so glad to " hear " from you again and hope you will share

many of your successes with with the rest of us. I know he is really

a success story for Dr. H., and we hear about him every time we go to see

her.

Happy Thanksgiving to you, too, by the way1

Jodi

[Fwd: Thanks Giving]

>

>

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Wow!!!! What an encouraging story!!!!!! I definately could use more of them.

I wish we could hear more from the older kids and adults with RSS. As word

gets out about this list, maybe we will.

Could you tell me about your son when he was baby, toddler years, school age

and so on? I know that's a lot to ask, but it would be nice to hear about the

progress you've made over the years and how you dealt with any teasing in

school and/or comments from strangers. Also, just out of curiosity, how much

did he weigh and how tall at 3 years old? And I know, I know, all kids are

different. I'm just curious

Anyway, thanks for sharing your story to us and giving us with " little " some

good news.

Stacie

Mom to my daughter - (6 1/2 yrs.) and son - (almost 3!) with RSS,

g-tube, and assemetry

R. Bauer wrote:

> ------------------------------------------------------------------------

>

> Subject: Thanks Giving

> Date: Tue, 23 Nov 1999 13:06:18 -0500

>

> To: " rss-support-subscribeonelist " <rss-support-subscribeonelist>

>

> We're " new " to the list but " old " to RSS. I have enjoyed the last few

> days of messages with reference to our son who as of Friday last

> is doing exceedingly well on Humatrope and Periactin through the

> guidance and support of Dr. Madeline Harbison. He hit the scales at 105

> and is now 5'7''.

>

> ' latest project at 15 years of age is his new job at the local

> grocery stocking, gathering carts, bagging and generally trouble

> shooting since the grand opening. He has found a new way to build those

> muscles beyond weight curls in the bedroom. All this adolescent self

> assurance and independence is a real thrill for his parents.

>

> It is always a distinct pleasure to be introduced to those beginning

> this journey and we really appreciate the opportunity to " show and

> tell " .

>

> Happy Thanksgiving!

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