Hello. I've been meaning to keep up with this blog, for me it is an important way of keeping track of everything we've been through, it's just hard to find the time to sit down and write.
More often than not, I begin a post, only to have to leave in the middle to do something, and I can never seem to find the time to finish the post at a later point.
Ellie is amazing. She's beautiful, she's everything.
Tomorrow, she's finally going in for her growth hormone stimulation test, thryoid function test, as well as a test for adrenal insufficiency. A lot of testing, but all of it is so important.
In October, we're going in for her sleep study, and then hopefully everything falls into place, and we can get her started on growth hormone treatment as soon as possible.
I have so much hope for the treatments. I was watching a couple videos from the 2009 FPWRC conference, where they discussed growth hormone treatment and all its benefits. The one that strikes me the most, is the impact it has on intellectual quotient numbers. Historically, adults with PWS had iqs in the mid-60s, now, if started prior to a year, and also in combination with a healthy lifestyle and maintaining a normal body mass index, iqs average 95!! A "normal" individual falls in the range of 85-115. That is undeniably exciting.
so, tomorrow is a big day. I'm tired, and need to clean the kitchen. Just Ellie and I tonight at the apartment, have to be at the hospital before 8am!
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