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, July 12, 2010

cancel that

And so....she didn't end up having the biopsy today. We went to the hospital early this morning, got her blood work done and got her hooked up to an IV for fluids. And then the labs came back and her clotting factor for how fast/slow her blood clots came back too high or low...which ever one it is that means her blood was too thin and the risk of bleeding with the biopsy would have been too great. Because it wasn't an urgent biopsy (we're 3 months late already he he he) why not wait till the risk for bleeding isn't there and just get it done without any complications. Since she's still getting blood thinner for her blood clot, they had us stop her injections the night before but that obviously wasn't enough time for her blood to get back to "regular." Claire has an ultrasound for her blood clot on Wednesday and we'll meet with the doctor at the time and discuss if she still needs to be on the blood thinner or not. So after we get the word from them, they will decide when to reschedule the biopsy. Possibly the beginning of next week.

So we ended up having a nice day at home and we all get to sleep in our own beds tonight!

Claire ate a fourth of a cherry, cut into miniature pieces, 4 yogurt melts and a few puffs, an m&m, and some bread pieces today! yeah!!

2 comments:

Terry said...

That is great that she is becoming interested in food. Now she will have to start watching her diet like the rest of us.

Good news

Terry

~adelle said...

SO I haven't checked the blog for a bit! Loving reading about what has been happening as of late. Glad the tiny babe is doing well. Half-way is a good place to be!

That is great that Claire is starting to taste and try things now. Very cool.