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 12, 2009

Day 59

Claire's blood cultures are still negative! We are counting our blessings this month and that is one of them! She didn't have to get the antibiotics again today because her level was still high enough...so we got home from the hospital in time for lunch! Tomorrow she'll definitely get the meds so I'm planning on a long day. But like I said before, that is a small inconvenience for the reward of a healthy child and not having to replace the catheter! Modern medicine literally saves Claire's live every day. I'm so grateful to live in a day when these medicine miracles are available for our use! Our princess wouldn't be here without them.

Benson loves soccer! I haven't got to see him play yet though because his soccer class is during Claire's dialysis. We had a wonderful friend offer to pick him up from the hospital each Thursday and take him along with her boys. She took this picture for me and I love it! For the next session, they made available a Saturday morning soccer class that I signed him up for so I can watch him too!!

Good day all around!

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1 comment:

Unknown said...

It does a heart so good to see that you guys have days like this!

November 12, 2009 at 8:16 PM

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