Children's was literally just around the corner from us. Everyone was very friendly and after taking the most detailed history in history, Dr. Rawlings came in and explained that they truly didn't believe that she has Hyper IgE Syndrome because all of her previous lab work showed that her body is responding to vaccines and is not deficient in any other areas where she should show abnormal cell movement. Even better, they recently isolated the gene that mutates in about 90% of the patients diagnosed with HIES. They now have a blood test that they do in their lab, so we will have a definitive answer in a few weeks.
It was becoming very obvious that she didn't have it, even before the Seattle visit, but it's nice to know that there is an actual gene that they can look for. It takes a lot of raw nerve out of life right now! We can do allergies, eczema and a gastric disorder, and we can do it gladly if that is ALL there is to deal with!
The pictures below are from the FRG Christmas party. We were so sure that Mia would have a meltdown if we tried to have her sit with Santa. She wasn't into it when he first came into the room. After she noticed that he was giving out presents, he was quickly a member of the club.
There was a craft table for the kids. It lasted longer than we thought it would!
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Walking around with her new doctors kit
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1 comment:
Looks like you had a fun time. Hope we can get together to play soon.
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