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.

Tuesday, May 18, 2010

May 18 9:00 pm

We had a fun hospital morning together. Everything went well with the medicine and Claire hasn't had any reaction to it thus far. We played cars, colored, read, and played doctor with the BP monitor--and they love to give their babies (and each other) pretend shots. They always clean the site for 15 seconds with alcohol before they go for the poke...and love doing it over and over again! Claire is pretty much a pro at receiving shots by now and hardly ever cries when she gets her twice daily poke of heparin. We will see the doctor tomorrow about her blood clot, after she has an ultrasound of the area in the morning to see how things are progressing.

This afternoon we had some fun in sun!!

Look at this little mother in training. Two babies in the stroller, an extra pitcher of water since someone always needs a little more drink, two diaper bags across the stroller handle, a baby in one arm, extra blanket for cuddling, two hands for pushing the stroller, and a determined look on her face that says...here we go kids!!
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1 comment:

Ryan & Keri said...

What cute kiddies you have! I LOVE Claire walking with her stroller all packed up and Benson looks so serious and grown up with his arms on his waist, like he's trying to figure out something or he's just accomplished something! Hope the medicine for him starts tasting better! Miss you guys. Wish I could have been in CO when you went. Who was Miss Douglas County?

May 19, 2010 at 4:04 AM

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