Hi Lynda,
Hope your trip to the NIH goes well. As with us, the trip was good, but once
we got there the testing was never ending! There wasn't any spare time to do
anything. We would no sooner get back to the Childrens Inn, long enough to
bathe, sleep and get back to the center for early testing. Just be patient,
there is so much for them to learn. And from the sounds of things with your
daughter, I think the doctors will be able to learn a lot from her history.
Good luck to you all, we will be going march 27. Miranda will recieve her
first dose of the new drug.
Keep us posted.
Love to all,
Sherri
----- Original Message -----
From: "Lynda" <bakkola@...>
To: <nomidsyndrome@yahoogroups.com>
Sent: Wednesday, February 18, 2004 8:52 PM
Subject: [nomidsyndrome] Going east


> My daughter, Becky (27) and granddaughter, Tiffanie (8) and myself
> are going to NIH on friday. Becky will be on the adult floor and
> Tiffanie and me will be on the children's floor. They will be
> drawing my blood to compare with the girls. I just heard the
> scheule of what to expect. Sure alot of testing. I'm hoping that the
> info about Becky when she was 9 will help others. She was
> hospitalize in sept '85 for fluid around the heart. Nobody could
> tell me why she had this. The following month, Becky was back in the
> hospital for a septic hip. It was really frustrating for us back
> then. The drs. didn't know why all of this was happening to Becky.
> And now, her daughter has the same thing happening. At least,
> Tiffanie hasn't lost her site. Becky has. Becky also is lossing her
> hearing. Becky's 2 older bothers are fine. And so is my other
> grandkids. We were hoping to do some sightseeing but not sure if we
> can fit it in now. This is our first trip to NIH and the east coast.
> We are all excited about this trip.
>
> God bless,
> Lynda
>
>
>
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