[tri-med] Re: Fw: subscribe


----- Original Message -----
From: <jacqueline44@xxxxxxxxxxxxxx>
> David (grandson) is just going on 5 years old &his problems started
>before he was born but nothing was done about them.

Hi and welcome Jackie! Sorry you had to seek us out but glad you've found
us!

It sounds as if your family and David has been through the wringer!
Yikes!

You stated that there have been many tests done but no answers given to you.
I'd demand copies of the reports. Many of us do this and keep our own
"medical file" on our children. Keeps things running more smoothly.

The mosaic portion of the diagnosis does muddy the waters for the medical
professionals. They rarely know just what to think of the trisomy affected
children and then you throw in the mosaic and they are guessing for all they
are worth. Best and educated guesses to be sure but they just don't KNOW. We
as parents with years of experience and the ability to pick many other like
minds tend to have a better handle than the medical profession with it's
outdated information and they have little to no personal experience.

You mentioned medical problems. What do you know of specifically?
Developmentally how is David doing?
What are his school plans? IEP's tend to be so much fun.......NOT. Is David
receiving spec ed only or a mix of reg/spec ed?

Hang in there and take care!
Michelle mom to Alex (14, partial trisomy 14 mosaic) and Molly (10)
Michigan USA

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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