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.

Thursday, December 24, 2009

Dec 24 12:00 pm

I think until this medicine stuff gets a little more settled, our nights are just going to be rough! She was up again almost every hour. Not in pain this time....but just not able to rest. She is completely off the fentanyl which makes us all happy but is still having some slight withdraws from it. Overall though, things are looking great! She got a sponge bath today which had to feel good! I'm off to take a nap!

Merry Christmas Eve!

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3 comments:

~adelle said...

Look at that scar! No wonder she is saying owie!! Merry Christmas!!

December 24, 2009 at 10:26 AM
Nathan & Michelle Watabe said...

My thoughts exactly! That is one big owie!

December 24, 2009 at 11:25 AM
** Adrian ** said...

I bet her sponge bath DID feel good! She's looking SOO much better everyday! What a trooper! That IS a big owie. I just showed the photo to my kids & Wyatt took one look & said, "I'd start whining if I had an owie like that." Yes, he would, too! Claire, you are one tough cookie!! MERRY CHRISTMAS EVE to you guys, too!! I hope you have a great day & I hope the medicine issues get resolved soon so you can all get some nice rest!

Love you! ;-D

December 24, 2009 at 2:02 PM

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