This morning Benson woke up and said his legs hurt. He couldn't even eat breakfast because his legs hurt so bad. I asked him why and he said he didn't know. Then he thought about it for a minute and ran to go find Dad. He then asked, "Dad, did you give me a shot last night, because my legs hurt really bad today."
His legs hurt because he had his first day of soccer class yesterday!! He absolutely loved it! The class is only offered during Claire's dialysis time, so my friend offered to take him along with her boys. I sent her with my video camera so we could check it out. After class his teacher said, "that Benson, he's just all smiles!" He definitely gave those legs a run for it!
I really am going to stop posting about the shots soon....BUT after giving her the more diluted dose twice yesterday, we decided that this was not going to work-even if it was for only ten days! I talked to the pharmacist this morning and she understood, but didn't think anything could be done to change it this go round. I ran into our main kidney doctor (literally she stepped on my foot as we were both turning the corner :) on my way back up and she had heard about what happened and said it WOULD be taken care of, no questions asked. We got a new batch of injections later this afternoon with the smaller, more concentrated dose!! There is such a difference! I am so glad we opened our mouths (complained) and got things settled!
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.
Friday, October 23, 2009
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4 comments:
It's AMAZING and WONDERFUL to see Claire so full of energy and life after the last month she has had. Kids are so RESILIENT!! What CUTE children you have!!
Send me an email and tell me where Benson is taking soccer!!! Is it at Soccer World?? i used to teach those classes. So fun and Kevin is just plain excellent!
I LOVE Claire's smile in that picture. It is hilarious! Way to open your mouth! :) Sometimes it takes a little bit of talking to get things done.
"This IS my smile!"
WE LOVE YOU, BENSON AND CLAIRE!!! Especially your cheesy smiles.
Grandpa Breon and Grandma Shirlene
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