Paige accepted into the NIH Undiagnosed Diseases Program
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We found out today that Paige has been accepted into the undiagnosed diseases program. We still do not know all the details but should have them shortly.
Here are two links that show how Paige has improved recently.
http://www.youtube.com/watch?v=PCjllWQZeRo
http://www.youtube.com/watch?v=RcPNdx1Dlko
The progress continues…..
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Paige continues to have great days, she can now crawl from room to room, she hasn’t done that in ages. She took a few steps today while i was holding her hands. She also doesn’t want to be held as much, once you put her on the ground the thrashing stops so clearly she knows what she wants. Paige also just passed the 30 pound mark, this is huge since her weight use to be an issue. So all in all the month of August is shaping up to be the best in a year. We are still waiting to hear from the NIH and Duke, so hopefully that happens soon!!
Another good day!!!!
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Paige had another good day with the exception of a call from one of her doctors explaining that insurance will never pay for her treatment, so now I need to come up with $60,000 for a year’s treatment. Not sure if that cost includes the people to administer the IVIG….it just keeps getting better. But the positive on this is that she is now 3 and we still have her and she is improving!!!
Happy Birthday Paige
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Paige turns 3 on August 4, but we are having her party today. She has been doing great the past few weeks and we are hoping it just continues. Hopefully the start of her 4th year will be the best ever!!