Benson and Claire were born with a rare genetic disease in which their liver produces too much oxalate--called primary hyperoxaluria. Claire's condition has progressed much faster than Benson's. She was on dialysis since she was 3 months old and for much of that time, did dialysis 3 hours a day, 6 days a week. She receive a much needed kidney / liver transplant on December 18, 2009. It is expected Benson will eventually need similar transplants.

Tuesday, September 15, 2009

Big DAY

Re-posted from cotaforbensonandclaires.com

Today we start the countUP. Today, September 15, 2009 is the day Claire is placed ACTIVE on the waiting list to receive a new kidney and liver. Today is Day 1. Any moment from today on we could get "the call." The phone will ring. The call WILL come. Today is a BIG day.

Day 1 ~ A stop at the water pond on the way to dialysis is a MUST!

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Benson came to dialysis with Claire today. We had a fun time blowing bubbles, coloring, reading books, and watching a movie. Diane and Scott were Claire's nurses. Benson especially loved racing his new monster truck back and forth with Scott. Both nurses commented about how well Claire AND Benson do for 3 (sometimes long) hours. They are troopers! Our summary for the evening included the new favorite game London Bridges, races around the house pushing strollers and walkers, and watching tennis while the kids settled down for bed. Both were particularly enthralled with the sport and got the hang of cheering for the players real quick!

We are excited, anxious, nervous, scared, and thrilled about TODAY!

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