If you're silly and you know it make a funny face! Her silly face is always the same:
We got a call from one of Claire's transplant coordinator and she said they were writing an 'appeal letter.' This letter would explain Claire's current condition, disease, age, etc. to UNOS (the United Network for Organ Sharing). Through this process, they would be able to get Claire more points, making her higher up on the list to receive a transplant. She told me this appeal process usually takes one to two weeks to go through.
Today when she called she said a new record was set. Claire's appeal got approved in one day. So now not only is she on the list, but she is VERY high up on the list with 24 points. (I don't really have a frame of reference for what that means, but from what I gathered from Claire's coordinator, she's sitting pretty high). The main hold-back for Claire will simply be getting organs that are the right size for her little abdomen. Could be tonight, could be in a month. "Sleep with your phone with you and be ready," were the last words the coordinator said. I wonder how well we will be sleeping for the next little while.
It's a very strange feeling to know that at any given moment, your life can and will significantly change. It's kind of like having a baby. Our bags are packed, we have a place set up for Benson to go, we're emotionally getting ready to pick up and go any hour, day or night, grandparents are also getting ready to come out when they get the call from us, but no one knows when it's coming! And just like having a baby, we are also blessed with NEW LIFE at the end of it all.
One quick side note about today: Fubsee Me Benson, our Beta-fish of 4 months, died today. Very sad for sweet Benson. Jared and I were just talking about Fubsee after dinner and commenting that he didn't look so good tonight, and really hasn't looked that great for the past few days. We took the kids for a walk to the park later and when we came home, my first glance was to the fish tank. Fubsee was definitely 'gone.' Benson pulled the stool over to see and started crying. He needed lots of big hugs tonight. Poor Fubsee....but glad he is not suffering/sick anymore. Benson helped "flush" him as we all said good bye. (A little dose of American Funniest Home Videos also helped lighten the mood a bit after all was said and done.)
2 comments:
Congrats on making it up high on the list. We are praying and thinking of you guys. I hope all goes well.
How was the move? Do you like it there? Oh, I was wondering if I could get an address for you now that you have moved?
Also, I wonder if you are still planning on doing the auction?
That is great she got bumped up. The less waiting the better! You have all been waiting long enough.
Sweet dreams tonight. :)
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