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.


Saturday, April 21, 2012

not an ordinary Saturday night

Well....tonight we're hoping Claire doesn't end up needing to go to the Emergency Dept.  She had a fantastic day!!  We went to Benson's soccer class at the Y (her's starts next Saturday) and she played soccer outside with the extra balls with Mabel.  She went to a friend's house after that and had a great time playing with her friends (while Jared and I had some focused-work time on the kitchen!).  NO worries at all today.  And then about quarter to 3 my friend said she could tell Claire was starting to act a little different.  Her head started to hurt, she was tired, and she fell asleep.  Weird.  Okay.  So she needed a nap?  Maybe.  But then when I came to take her home, she was really REALLY still tired and didn't even wake up when I picked her up to take her home.  She stayed asleep even through the rain while carrying her to the car.  When she got home, she finally woke up and was miserable.  I took her temp, and she did have a fever.  So is it still just a nap she needed?  Who knows.  I called the doctor to check in with what they thought.  Thankfully, with a dose of Tylenol, her fever has come down.  Now we just need it to stay down.  If she gets another fever tonight, we'll have to take her in to the hospital right away.  If she sleeps well tonight without any more Tylenol and her fever stays away...then we'll just call it weird and hope she's felling better in the morning.  Keep our fingers crossed and our prayers high for good health!

3 comments:

Auntie Em said...

Poor little thing. I hope it's nothing serious, and will be saying a prayer for her.

~adelle said...

I hope things are going well now. Sheesh.

Grandpa Terry and Diana said...

Hope by morning the doctors will have it figured out. In the mean time we will keep her and your family in our prayers.