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.


Sunday, November 1, 2009

Day 48 Yeah for November Day

First thing...tomorrow morning the online auction for Benson and Claire begins! People have donated over 100 amazing items and services that will be auctioned off within the next two weeks. And it's a GREAT time to start thinking about Christmas gifts! Please help us spread the word to your family and friends via blog, email, facebook, etc. And thanks to everyone who has donated items and worked so hard to put this together for Benson and Claire! It's going to be a great success! bensonandclaireauction.blogspot.com

Claire had a much better day today. She slept well last night for 14 hours! That in and of itself helped today to be much happier for all. Although 2 legs in a cast is worse than one, we are very grateful we had her right leg checked yesterday and got it taken care of. That's probably one of reasons she slept so well last night. Having the right leg also in a cast, although it seems it would be more uncomfortable, has actually made her more comfortable because now it is isolated from movement and it can heal properly. She was happy for the most part today. She gets frustrated because she can't get what she wants; and just as any other 2 year old, communication is still not 100% perfect. But I'm sure we'll find new things for stationary entertainment as the weeks go on.

She did have to go into the hospital today for a quick blood draw. They are having a hard time getting the lovenox shots at the right dose. Her heparin level was fine for the first few weeks, and now it is too high. We've had to change the dose twice this week as they've tried to figure out what the appropriate level is for her. The blood draw today was another heparin level and they changed the dose again to see if that works. I'm sure they'll get it figured it out soon.

Happy Sabath. And Happy November! What a great month full of gratitude we have ahead of us!


Her new way of getting around the house. Until dad's back starts to hurt.

I think she was most frustrated today because she couldn't push her baby stroller around. Creative daddy fixed that problem!!

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