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 28, 2011

Monday night

Good news about Claire's kidney. The LAB started processing the kidney function value differently and that's what caused the increase in her creatine. SO everything is fine! Just a new normal for her, adjusted because of the lab. Good to know, right?! Gee, glad they figured that out before we ended up with a biopsy!

But if it's not one organ, it's the other. ((at least it sure seems that way sometimes!)) Her liver numbers are still all over the place. The doctor at first said he wanted to do another biopsy...but the nurse convinced him to hold off. Instead he wants more labs, a liver ultrasound and doctor's visit on Thursday. Depending on those results, possibly a biopsy or NOT. Let's hope it's the OR NOT part...but of course, whatever's best is obviously what needs to be done.

Claire is feeling happy and well these days. She still has the diarrhea but she gets to finish the oral antibiotic tomorrow so hopefully the diarrhea will go away asap after that!

Benson's on Spring break this week. He's SO excited because, in his words, "I really needed a break from school!!" Wow. What a rough life it is for preschoolers these days! Too bad it's not quite spring here in Rochester. They really should wait at least another month...or call it something different. (almost-spring break...jokes-on-you spring break...made-you-look spring break...still-snowy spring break...or just I-really-need-a-break-from-winter spring break) Nevertheless, the kids did enjoy some outside time in their snow cloths today. They were happy to be out and I was happy to have them out! I'm so glad they have each other to play with. They are the bestest little buddies. Reminds me of me and my brother growing up. Love it.

A photo of the two of them with their arms around each other, playing gleefully in the snow would be perfect right here. I guess I enjoyed my inside alone time a bit too much today. Maybe tomorrow!
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2 comments:

Grandpa Terry and Diana said...

Glad to hear about Claire's progress. She is headed in the right direction.

As for Benson, he does have a ways to go before he can get a break from school. Let's see he has kindergarden, elementary school, jr. high school, high school, college and then university studies.

But it surely must seem like he does deserve the break from preschool.

Yes it is good to be friends with your siblings. And Mabel will fit right into the grove.

March 29, 2011 at 1:49 PM
The Lueders said...

Relief re: the Kidney, and hope and pray her liver starts functioning the way it should!!!
I am so with you on "Spring Break" I need warm weather ASAP! Mommy just seems more happy when the kids can be outside running off all that energy!

March 30, 2011 at 12:42 PM

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