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.


Thursday, April 22, 2010

bumps in the road

Claire had a little set-back yesterday. We're not for sure what exactly happened, but she somehow injured her already broken leg. We took her in to get an x-ray but there wasn't a definite, clear-cut fracture (besides the one we already knew about). So we brought her back home and she slept for about 3 hours. After she woke up, she was a different little girl and felt much better. I don't think anything else is broken...perhaps she pulled a mussel or maybe bruised a different bone...but from the way she's been acting today, it doesn't seem to be anything major. She still complains of some pain occasionally when we pick her up/set her down, but hopefully it will pass without need of intervention. We basically just can't leave her side from now on. She is way too fragile and we just can't risk anything else happening to her.

We met with the hematologist today to talk about her blood clot. They did an ultrasound of her neck this morning. The person who does the ultrasound isn't supposed to tell you anything about the "results" of the test, but occasionally they slip some comment in. It would have been nice if the comment would have been something like "so why exactly are they doing an ultrasound on this..."((implying they don't see anything of concern)). Unfortunately, the comment today was "so is she taking any blood thinner to treat this..." ((implying they definitely saw something of concern)). And so they did.

We were all hoping that the clot might just resolve itself and no treatment would be necessary. She's been off the heparin injections for the past week because of the broken leg--they didn't want to cause further swelling/bleeding in the broken leg. And since being off the heparin, the clot has certainly gotten bigger. It's not going away on it's own. Sigh.

And so we begin the 3 month treatment of heparin shots, twice a day, again tonight. She was already asleep when the injections were ready for us to pick them up tonight...so it was a rude awakening to wake her up with a poke tonight. I hate having to do it. ((well, Jared actually does it...but I hold her hand...don't know which position is worse!)) But looking on the bight side--at least there is treatment for it and at least we found it. Even coming across the fact she had a clot was coincidental, so we're happy we at least can do something about it. Too bad there isn't a less painful fix for it though. But like I said when she was on the heparin before, it's a good thing time goes by fast. 3 months will be here and gone before we know it. One day, one shot, at a time.

Tomorrow we're back to see orthopedic to check up about her leg. Tonight, we sleep!

5 comments:

Megan said...

Shots blow!

JoAnna said...

You amaze me.

George Ama III said...

Poor Claire. Her life is so rough. It has to be exhausting as Parents. I couldn't do it. There isn't any quality of life for anyone involved with a super sick child. Everyone suffers.

~adelle said...

That darn clot. :( Sorry about all that mess. BOOOOO to owies.

Hope you can enjoy some lovely Spring weather and perhaps eat a few mini marshmallows or something. Here's to a better few days!

Tasha said...

There is always something! I hope her leg feels better and her clot also gets better.