Monday, March 21, 2011


Things have been interesting lately. 

First off, we had an appointment to get K her AutoPAP last week and the day of the appointment I got a letter in the mail stating that our insurance had cancelled.  Now, K has state inusrance and I had sent in her renewal form and somehow they "lost" it.  I then sent in another renewal form which they also "lost".  I finally did a 3rd one and called to see if they had received it and they had.  So now we wait in limbo until this all gets straightened out.

In the meantime, today we had her appointment at the University of Washington clinic that handles children with PWS.  It was an interesting appointment.  We met with Dr. Leavitt and a nutritionist, Sharon.  They asked us a ton of questions and wanted to just get a general picture of what we had going on.  I have a lot to do over the coming weeks!  They want us to start keeping a food journal.  K's BMI is literally off the charts.  They want to get her somewhere between the 75th and 90th percentile for weight and they'll be happy (and so will we!).  They also want us to followup with her endocrinologist and find a ophthalmologist at Children's Hospital for her to see.  Of course, I can't do any of that until we get the insurance situation straightened out.  Also, they want to help us out with getting her school on board in regards to making sure they understand the severity of keeping her supervised at all times.  They also want us to look into getting her into some sort of a P.E. class.  I'm glad there will be someone besides just us advocating for the school to supervise her more.  Sometimes I think they think we overreact when it is literally life and death for K.

Now we just have to explain to her mom and grandma why it is so important for us to limit her calories so severely.  We're not sure what her daily allowance will be just yet as they need to figure it all out and will do so when we give them our food journal (which I will be starting tomorrow).  Also, they recommended we get her legal guardianship taken care of before she is 18 which will make things easier on us later.  I have that and Social Security to take care of so while Pittsburgh is on hold until insurance comes through, I need to get busy on that stuff.  Just when I felt like I was getting caught up, there's always more to do!

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