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, November 19, 2009

Day 66

Wow! The online auction was such a great success! That put us over the half-way mark to the $100,000 we're trying to raise for the kids transplant expense fund. Thanks to everyone who has contributed to the fund and helped us get this far. We are humbled by the generosity of MANY who give of their means, talents, and most of all prayers in our behalf.

We had a much happier day today. The best news of the day is that the antibiotic dose she got yesterday was the last one! Having this infection taken care of and behind us will make life much MUCH easier for all of us! They will take blood cultures again on Monday to make sure they are still negative...and if they are, then we'll consider it a done deal and pray NOT to get another infection!

Clarie was one active little girl today on dialysis! She was all over the place: on the floor, in the crib, in the chair, playing ring around the rosies, and then doing it all over again! She and Benson also had a fun time painting, playing play dough, and having a puppet show. I was so tired by the end of it all! Gratefully she took a nice long afternoon nap. I even got to close my eyes for a few minutes too so we're in good shape here!


When the doctor came in today she said, "She looks like a million bucks!"

3 comments:

Anonymous said...

Great to hear the good news. Thanks for all the updates, makes me feel like we are right there. give your love to Benson and Clair, and to each other too. We are praying for your family every day.
Love the Graves

Nathan & Michelle Watabe said...

Totally thought of you today as we sat in the hospital for 7 hours. Elizabeth broke her arm. I kept thinking, "Natalie does this EVERY DAY!!!" I don't know how you do it! And Claire is so brave and strong. Elizabeth cried over every little thing. I kept thinking, you have no idea how lucky you are that this is all you have to deal with! Admiring you even more than ever!

Ryan and Keri said...

That is one of the sweetest stories I have heard all day (from Day 65)! You have such sweet children. Benson is such a special brother. And you are an optimist. I love that about you, Natalie! You're such an example to all who come into contact with you. Hope things continue to go well with Claire. YEA for great days! It may wear you out, but her activity is so much better than several weeks ago.