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.

Wednesday, October 14, 2009

Oct 14

I just keep hoping I can post some better news, but not today. Claire's leg is not looking good. It is so tender to the touch and there's no way she'll bare any weight on it. Her ankle and foot are especially swollen. The doctor thought we should get another ultrasound this afternoon to see what was going on instead of waiting . I took her up to radiology right after dialysis and they did the ultrasound. The technician wouldn't give me any info so we're still wating to hear from the doctor about it. We have to take her back in tonight at 5:00 to do another blood draw. Her heparin shot is due at 5:00 tonight and they want to know what the lowest level of heparin her body has right before she gets the shot. They may need to adjust the shot dosage accordingly. Hopefully we'll hear something from the doctor when we're in for the blood draw tonight. She's misrable. Her body just doesn't feel right.
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2 comments:

Philip, Melissa, & Summer said...

I am sorry to hear that today is not the best for you guys. I hope all goes well with the doctor and she will feel well soon.

October 14, 2009 at 6:47 PM
shauna said...
This comment has been removed by the author.
October 14, 2009 at 7:17 PM

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