Hi Michele,
We just got back from the NIH, and Miranda is doing real well! Not too good
as far as blood work goes, but at least they were able to take her to the OR
for most of her tests,(opthamology, audiology) they were able to get blood
during that time. As well as MRI and lumbar puncture. She is down to 6 ml
daily of steroids, first time since she was about 3 years old, she just
turned nine!
There was another boy there with us, they did not speak english, Salvatore
and his mom. It was real hard to talk, now I wish I spoke spanish! But he
was doing well too.
We go back Sept. 19.
Miranda seems to be having some high blood pressure, it was ranging 138/82,
up and down. Not sure why.
Well I have to finish unpacking, after we left the NIH we drove to Georgia!!
We got home last night. Thoroughly exhausted!!
Hope all goes well at the NIH, say hi to Dr. Goldbach-Mansky and Janet and
Ana ( Ana is sooo sweet isn't she?)
Good luck to you hope all goes well. Write when you get back.
Lots of love,
Sherri & Miranda
----- Original Message -----
From: "mmkcgriffin" <mmkcgriffin@...>
To: <nomidsyndrome@yahoogroups.com>
Sent: Monday, June 28, 2004 10:28 PM
Subject: [nomidsyndrome] NIH Visit and update


> Hello Everyone,
> My email has been down for a month. I have wanted to tell you that
> Kieran and I leave for the NIH July 4th. We will be there all
> week. He has had labs the last 3 weeks and is doing so good. I am
> so proud of him. Is anyone else going to be there? Camille, so good
> to hear Alice is doing so well. I can't believe she medicates
> herself. Kieran is so impressed. He is gearing up. His strength,
> when it matters most, amazes me. Has anyone been to the NIH
> recently? Anyone who has been have any advice? This will be our
> second visit, 1st in the trial. I will keep a diary and try to
> update you all when we return.
> Hope all are well.
> Michele
>
>
>
>
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