Hi Jan,
Yes, I received your email tonight. We just got home about 4 hours ago from
the NIH. We too will be very sad to see Natalie and Janet go. Janet said she
is retiring in September. Who knows, I don't think she will be able to stay
away completely!
Our trip went ok, Miranda is pretty bruised and from crying so hard she now
looks like she has chicken pox all over her face! Between the bruises and
the spots, she looks terrible! We did have a nice time with Alice and
Camile. Alice is a wonderful girl! She and Miranda seem to bond too! Camile,
was a wonderful person to talk with, we all shared a triple layer death by
chocolate cake! Yum! My husband and I and Miranda went out to dinner and
brought back the cake for us to share. It was delicious!!!!!
We have now lowered Miranda's steroids and increased the anakinra. She is a
little grumpy, we now wait and see. Some of her urine test came back with
glucose, and her blood pressure was a high. We are keeping an eye on type 2
diabetes. Certainly not we were expecting to hear.
Well I had better get to bed, it was a long ride home. Good luck to you,
sorry we missed you! Only by a day! Hope you enjoy the Children's Inn, it is
truley a wonderful place to be when your not in the NIH.
Everyone there (Childrens Inn and the NIH) are really wonderful people! Let
me know how things go.
Best of luck to you!
Love Sherri
----- Original Message -----
From: "jand71054" <jand71054@...>
To: <nomidsyndrome@yahoogroups.com>
Sent: Friday, April 30, 2004 1:43 PM
Subject: [nomidsyndrome] hello again


> Hello everyone. I have tried countless times to get my e-mails
> through, but since I have changed my e-mail address they keep being
> returned; If anyone gets this please let me know. If there is
> something I need to do, again, please let me know. Zachary and I
> returned from the NIH April 16. It was a great trip. His bone
> density has slightly improved. He still has severe osteoporosis, but
> we will take any improvement, anytime. His vision and hearing loss
> have remained the same. I am happy that it has not progressed. We
> met a lovely little boy Jamaal Brown, who is pretty severe; He was
> quite afraid of all the doctors and treatments; Understandibly so,
> when you do not understand what they are going to do; Zach made him
> laugh and the two really bonded. Zach asked Dr. Goldbach-Mansky if
> only she could clone him, then they could take his clone home with
> them and he could cheer up Jamaal when he is frightened. I hate to
> see Janet Jones and Natalie leave this summer, but wish them both
> the best. Janet is long overdue for retirement and a well deserved
> one at that. Natalie will go back to Harvard Medical School; They
> both are really dedicated individuals. If anyone receives this e-
> mail, PLEASE let me know. Take Care, Jan DaPrato
>
>
>
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