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.


Monday, March 21, 2011

another week

Claire is doing much better. Today's the first day we haven't have to give her itchy medicine and she did pretty good! Still an occasional spot that she'd be bothered by, but I think the itches are on their way out! Hooray. Now if we just never get that medicine again (or anything like unto it!) we'll be fine! Tomorrow is her last day to go in for the twice daily antibiotic....but then we have to go back Wednesday for more blood work. Her kidney function has gone up a bit in the midst of everything else going wrong....I guess he felt left out and wanted in on some of the attention. So we'll be checking that more frequently and filling her up with as much fluids as she can handle. Claire's liver numbers aren't normal yet either, but they're thinking that when this infection is cleared up, the numbers will hopefully get back to normal then. And she has diarrhea still, which we think is from all the antibiotics she's on...so hopefully that will clear up soon too!

There's just lots of little nuisances going on with this little girl right now. It won't last for ever but sure can be a pain when you're in the middle of it. But I suppose that's just life. For all of us. Just different kind of little nuisances for each of us to deal with.

3 comments:

Stephanie said...

You have such a good attitude Natalie!

Grandpa Terry and Diana said...

Well another report and another week brings us closer to getting back on track.

You are doing a great job. And have lots of patience. I often wonder where you get all of that patience???

Love ya,

~adelle said...

I dare say your nuisances are a little bit bigger than most. :) My kids have been sick for the last 2 weeks and I am going out of my mind! I don't know how you do it. Really. I would be loony.