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, December 3, 2009

Day 80

Some nurses (who don't take care of Claire) jokingly accuse the nurses who do take care of Claire of getting paid to play. I suppose that's true in many respect...tea parties, puppet shows, books, painting, play dough, and stickers. But today, Claire's nurse and I decided that WE definitely WORK! We worked our can off today! Benson came to dialysis again and we had crazy, busy, non-stop FUN/WORK for three straight hours! Didn't even have time to snap a photo! I was so tired by the end. The last 15 minutes we put on a video and everyone finally settled down for a half a minute. (Should have done that a lot sooner and saved at least a little energy for later!) Claire's nurse and I agreed that she is definitely working when she takes care of Claire; it's just a different kind of work than the others who are taking care of patients who sleep for their entire treatment. (oh, how would that be....nice for a day or two but then I'd want my active princess right back, bouncing off the wall, pushing the dialysis restraints to the limit!) I too get paid with a beautiful, healthy daughter who gets to live one more day! GOOD NIGHT!
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3 comments:

Make Do and Mend said...

I agree. Working with kids is hard work. I am a teacher's assistant at an elementary school. It is the toughest job I've ever loved. And I do love it. But it is work. Anyone who criticizes folks who work with kids as "not working", I urge them, no challenge them to spend a day trying entertain or even teach a child how to do something. It can wear you out! But then it is one of the most rewarding things in this world!

December 3, 2009 at 6:00 PM
Crystal Taylor said...

Wow, you are so amazing. I can't even imagine trying to keep a 2 year old entertained for 3 hours a day confined to a hospital room! Truly inspiring.

December 3, 2009 at 9:00 PM
~adelle said...

Seriously. I love it when people who work "real" jobs think they do so much more than mom's who stay home with their kids. I always think, "are you kidding me?" Kids are so much more work than sitting in an office, or checking people out at the Gap...
Then, times that by ten on your part by having to entertain in such a small confined area day after day. That is the ultimate job...you are so good at it. You deserve a raise.

December 4, 2009 at 7:16 AM

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