Good Morning,
I know exactly what your saying about not doing enough, I have often felt
that we were not doing enough to help Miranda. Some people do make you feel
like there is more to do and you just haven't looked in the right places!
Believe me, if there was, don't you think we would all be doing it! I also
think some doctors should re-evaluate their opinions, we had one doctor tell
me that miranda has a big head because my husband and I have big heads, and
her fever was over 102 (in february) because my van was too hot!!! I dropped
him as quickly as possible. One doctor prior to him, told me she was a late
bloomer and to go home and enjoy her! Not even a month after that, she was
in the hospital 104 temp. spinal fluid shooting out of the monometer, and in
surgery for a shunt. So I am very glad I didn't listen to him either!
We know our children better than anyone, I think the docs at the NIH are
wonderful, because they listen to you, and no idea or thought (from you as a
parent) is never a dumb question.
I do hope you have a good experience at the NIH, the Inn is an absolute
must! After a whole day of testing, it was nice to go "home", to the Inn.
Take care and keep us posted.
Lots of love,
Sherri