Day 2

Re-posted from cotaforbensonandclaires.com

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.