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.


Wednesday, December 23, 2009

Dec 23 10:15 am

Another rough night for Jared and Claire. Claire just wasn't able to settle down enough to get to sleep. She was in a lot of pain. They could tell by the way she was grunting, her facial expressions, and her inability to relax. Since 2 am they've both been up. The doctors this morning are talking about how they can manage her pain better.

She is still having good urine output and everything else looks good. About 9:00 this morning she did finally settle down and is now resting...not in a deep sleep, but at least her eyes are closed and she's able to relax. Every 5-10 minutes or so she jerks awake and cries all done. It seems like it's going to be a rough few days/nights as we try to get her comfortable. At least the fluid is steadily coming off so that isn't causing as much discomfort anymore. And how thankful we are that the kidney and liver and working so well!! That's the point of all this, right?!!? There's something to rejoice in! Just have to get through this rough recovery stage and get her comfortable again.

4 comments:

hjn said...

Bless her baby heart! Bless mom and dad! Praying for you all each and every night! She probably won't have much memory of any of this when she is older but you all will. Keep strong!

~adelle said...

I am sure she is all done being sick! Just a few more days and then she will start to feel better. Make sure Jared gets a good nap today! What a trooper. Good thing you guys make such a good team. :)

Mary said...

Oh my...you've almost reached your goal of money raised...AWESOME!!! I remember when we were so excited after the garage sales...and look how it spread across the nation! So glad that the new organs are working like they should! Hooray for Claire!

5littlecuties said...

I don't know you, but I have been absolutely captivated by your blog. What an amazing and inspiring family you are. Heavenly Father has a plan for each of us, and how marvelous that he sent a very special spirit to your home. Thank you for letting us get a glimpse of your life, and the miracles that are taking place. It has motivated changes in my life, that are priceless! I wish you a very Merry Christmas.