We're planning to head back to Minnesota on Sunday, and Rylie has her next ERT scheduled for Monday at the hospital.
Hopefully we'll post a more informative update soon. Thanks for checking in.
Friday, April 11, 2008
Waiting in KC
We got some very positive news regarding insurance. As some of you know, there was a three-doctor panel review asking if transplants for Hurlers was experimental or standard care. All three doctors agreed with the first doctor from Duke saying that it is life-saving treatment and is no way experimental. We have no final word yet, but it is hard to imagine them trying to get out of paying now that there are four doctors agreeing with our doctor. Maybe we'll hear something today, or Monday at the latest. I'm sort of counting on Rylie starting the transplant prep drugs on Wednesday, one way or the other, because the thought of waiting anymore is too hard. Hopefully Rylie keeps healthy! We're doing what we can to keep her away from germs until she can be admitted to the hospital next week.
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4 comments:
Have been thinking about you all, so it was good to read the latest news this morning. Sounds like progress is in the works! Hope you've had a good visit in KC -- know the change of scenery was good for everyone...and Rylie needed a little more spoiling I'm sure! Safe travels this weekend. Love and hugs-
Jo & Leonard
I check in to see that little face peeking at me while I drink my morning coffee! We're with you in prayer...Deb and Gary
Hello you guys!
Have been checking in and thinking of you. Hoping the insurance issue can be put to rest. Love seeing the video and picture updates. We are always keeping you close.
Much love,
Susan and Paul
Hello you guys,
We've been checking in and thinking of you. Hope the insurance issue can be put to rest. Love seeing the video and picture updates. We are always keeping you close.
Much love,
Susan and Paul
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