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, January 23, 2012

Number 5 is our boy playing in his first big basketball game!! It was so fun to watch him play on Saturday. It was hilarious to see 10 young boys, trying to figure this game out! Couldn't help but smile.



And then there's Mabel who was pushing her limits to see how far she could go before she crossed the curtain to the unknown other side of the curtain! Are ya going to chase after me yet, Mom?!!!

Two brief medical updates. Claire had an eye appointment today and her vision has slightly changed since last year. The Dr. prescribed her some different lenses for her glasses (that she hardly wears). She functions just fine without the glasses and and see things well for what she needs to see, so she just doesn't like wearing her glasses that much. Although she did say if she got new, pink glasses and a new pink case, she would wear them. Uh hu. We'll see. When she goes in for her bile duct dilation on the first of February, they will dilate her eyes while she's asleep and take pictures of the backs of her eyes to see if the oxalate crystals have changed at all.

Mabel did tests (some time ago) but I spoke with the Dr. on Friday about Mabel and everything is completely normal, as far as oxalate/kidney issues go! That is what we expected, after the initial blood test done at her birth, but the Dr. always like to confirm with multiple tests. Definitely reassuring to get good results about the absence of PH in sweet Mabel!!

I'm afraid a little cold might be trying to creep into our house. Not just a draft of cool air....a bug with a runny nose! Benson and I are the first victims. Hopefully the first and LAST!

2 comments:

~adelle said...

Rah Rah Rah! Gooooooooooo Benson!

Grandpa Terry and Diana said...

Benson looks like a pro.

Wish Claire the best.

Mabel is establishing her limits.

Good luck with all three.