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.

Tuesday, November 8, 2011

back home

It certainly is good to be home. Although let's just be honest for a minute. At the hospital, there's no laundry to do, kitchen to clean, mail to go through, floors to sweep, Benson gets the week off from school, and the list goes on. It's all waiting for me at home!! So yes, it's good to be home....but that also means it's double-duty-catch-up time too! It seems to take a few days for us all to adjust and get back into a new normal-ish life style! AHHH!!

Claire feels great! Jared sewed a bag to cover Claire's drain bag. (Seriously, how awesome is he?!) She loves it and it "looks" so much better than the greenish/yellow color of bile. ew. So she's strutting around with what looks like a big, over sized pocket and it doesn't seem to bother her much at all. At least for the first day. We've tried to set some rules to turn down the crazy-kids dial and I suppose it worked okay for the first day. One day down...lots more to go.

Mabel got the skin of the blister cut off from her hand...and it was actually quite gross. I have a pretty strong stomach and have seen A LOT of medical procedures on my kiddos. But watching them cut off her skin and to see the pure flesh and blood underneath was almost too much. No pictures of that one. I'm still trying to forget! But it is healing up nicely. We have to change the dressing on her hand at least twice a day and we can finally see the beginnings of new skin starting to form. She is still as tough as ever. She doesn't cry a bit when we change her dressing and only cried towards the end when they cut off her blistered skin. The doctor thinks it will be mostly healed over/closed by the first of next week! Wow. Our bodies are amazing! And thankfully they ARE!

Claire went in for her antibiotic today at the same time Mabel had her apt so Jared and I divided and conquered.....and we're out of there in an hour! Not too shabby!

painting her nails and the box (last day in the hospital)


Jared finally got to open his birthday presents. He loved the Mayo Clinic calendar from Claire and the Symphony chocolate bar from Benson.
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1 comment:

Grandpa Terry and Diana said...

Glad your home but glad you are coming to SLC too.

That Mabel sure fits into your family. She is one tough cookie.

November 9, 2011 at 8:34 PM

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