Re: A different Geneticist. (long) - Paige

October 27, 2003

Paige,

I think we ALL have been through the denial part of accepting the RSS

diagnosis. I, for one, kept thinking that maybe it was the cord wrapped 5

times around 's neck, that caused all of his problems, maybe he

didn't have RSS at all. That all ended with our visit to Dr H. Or so I

thought. Then at the convention this summer, SO many people came up to me,

and asked me if I was SURE that had RSS. And I thought, maybe Dr H

was wrong. Maybe when she sees him this time, she'll say that she made a

mistake. I found myself hoping, once again, to slip past that RSS diagnosis.

That didn't happen, and Dr H is absolutely sure that no matter how much

weight has gained, and no matter how big he's gotten, that he has

RSS. I guess a part of me was still denying the RSS diagnosis. I still

wanted it not to be true, but this time it wasn't for me, but for ,

and all he will have to go through in the years to come.

There are a million other diagnoses, that would be SO MUCH worse than RSS,

and I am SO thankful that doesn't have one of those " other "

diagnoses. I thank God for every day I get to spend with my wonderful

grandson, and I could careless that he has problems. Those we can work

through as long as we have him.

I guess what I'm trying to say, is that you've found a wonderful group of

people here, that will all let you know that you aren't alone, and that

we've all felt the same way at one time or another. It's all part of the

process. Be thankful that Bradley has a syndrome that will allow him to lead

a normal, active, productive life. It could be much worse.

Hugs to you and Bradley,

Pat (g-ma to , RSS, 22 months, 19# 13oz, 29.5 " , Prevacid, Zantac,

Singulair, GT)

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