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, November 11, 2009

Day 58

First of all, if you haven't checked out the online auction lately, you really should! They have still been adding items daily! I am just overwhelmed at the response we've gotten from lookers, bidders, and donate-rs!! Thanks to everyone! There are only 5 days left to bid so take a peek before it's too late!

We made a mistake tonight by telling Claire we were going to give her some baby food (purred pears). She was really excited as we talked about it and she made sure we had her bowl , spoon, and napkin all ready. The only problem was that when we got her into her chair, she demanded that baby "Sue" came and sat with her at the table. She wanted to feed HER baby the food. Duh! Of course, she's not the baby anymore. She's got her own babies to worry about! She didn't get a taste of anything in her mouth but Sue sure got full! Tomorrow night we'll just have to tell her it's time for dinner and try again!

Claire was just full of personality on dialysis today! I think it was because Benson was at preschool and she had her own chance to shine, make entertainment, and do whatever she wanted to do.

Kick back, relax, and enjoy the puppy pockets! Livin' the life!

She has also become very fond of pockets lately. Sometimes on dialysis she likes to put her jacket on just so she can put her hands in her pockets. And in case you're wondering what she's smiling about....it's not the fact that I'm taking a picture. She watching her favorite episode of Dora and the Choo Choo. Can't remember the last day we didn't watch this--but I do limit it to once a day so I don't go insane!!

The fabulous news of the day is that so far, her blood cultures are negative! That is the best news we've heard in a while. If they don't come back negative, there is a possibility they'd had to pull the catheter and replace it with a new one. We so don't want to go there. BUT SO FAR, SO GOOD!! They'll see if anything shows up tomorrow on the culture, but it's looking good. She didn't have to get the antibiotics today because her level was high enough already but we're pretty much planning on staying an extra hour tomorrow for her to get them. Longer day but SO worth her getting better and not having to replace the catheter!

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1 comment:

~adelle said...

Don't you love how every character on Dora sounds like they are shouting at you! AHHHH. The kids love it, but it can get under your skin in less than 1.2 seconds. I listened to it for 7 hours straight on the way to Vegas this Spring and have not ever fully recovered!

Glad those cultures are looking good!

November 12, 2009 at 7:03 AM

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