Tuesday, February 15, 2011

Today's News

Well, we finally had K's followup with the Children's Pulmonologist.  It's as we thought: Sleep apnea.  They say the first step in treating kids with this is tonsills/adenoids out.  Well, she had that done in 2004 so that's not really going to do anything for us.  So the next step is a CPAP machine.  We have to wait for insurance approval and then someone is going to come out and bring it to us and get it all set up.  This should make for an interesting time since K travels back and fourth between our house and her mom's during the week.  Plus, it's just another thing for her to get used to which can either go alright or go horribly.  Guess we'll have to wait and see which one it will be.

I am getting more and more excited for her appointment at our local genetics clinic (where they supposedly specialize in PWS) at the University of Washington.  We're going to be meeting with a doctor, a behavioral psychlogist, and a nutritionist.  I feel like I have so many things I want to ask and get information about, but they're all scattered around in my mind and I can't seem to just pick them out and write them down.  Hopefully I can better focus them as the time gets closer (March 21).  I think at this point I'm most excited to see the nutritionist.  I understand K should be eating about 600 calories a day to lose weight with PWS but what I don't know is how to feed her that and give her the nutrition that she needs.  Can't wait to learn all about it!

As for Pittsburgh, I only have 1 more records request to submit.  I have gotten records from the Everett Clinic and the school district.  I'm waiting on the records from Children's Hospital and I still have to submit the request to the University of Washington.  I think that's just about the last step.  I got this neat (and unexpected) CD in the mail the other day from Children's and when I popped it in the computer, it was a computerized file of a bone density x-ray K had done to check her growth plates in her hand a few months ago.  I wasn't expecting it but it was pretty neat to see :)  I haven't shown it to her yet - maybe tomorrow.

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