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 p.m.

The closest thing we got to a smile!



The doctor did meet us at the hospital tonight for Claire's 5:00 blood draw and said from what she read from the ultrasound report, things seem to be pretty much the same as the last one they took a few days ago. She'll get a for-sure interpretation tomorrow, but she said there was at least nothing of major concern right now. Her heparin shot level was right where it needed to be so they said just keep doing what you're doing! Jared and I both breathed a sigh of relief.

She took a nap on dialysis today. I can probably only count on one hand the number of times she's done that. The only time she does is when she's sick or doesn't feel good. Today definitely fell into that category.

She's off to sleep now. I feel like all she does now is sleep and go to the hospital! The sleep part we're good with--she needs it. It's the hospital part we'd love to cut down a bit on. We have got to get that leg better so her spirits and her body can get a movin' and a grovin' again!! We're going to try to switch things up a bit tomorrow and actually go somewhere else. It will be good for all of us to get out.

2 comments:

John & Shauna said...

Wow! What a crazy two plus weeks you guys are having. Hopefully things will slow down a little. I hope Claire gets feeling better.

~adelle said...

Icky Icky! I hope that darn leg gets better soon. My goodness the girl is probably about ready to go nuts! I would be! I will keep those prayers a coming. I just keep thinking...there is an end to all of this. This will not go on forever. She will get better and get her transplants and then life can go on eventually without SO MUCH HOSPITAL! That day will be so sweet. :) Have fun on your outing. Maybe you will get a full teeth smile today~ Here's to hoping.