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, December 10, 2009

Day 87

Claire really needs to get her transplants.

We were so discouraged to drive to the Emergency Dept. again tonight. None of us wanted to be there.

Claire was kneeling on a step-stool against the fridge, playing with the alphabet magnets. Benson decided he needed the stool and pushed her over. She tumbled off the side and landed on her back. It was hard to tell what was wrong at first. She cried really hard with the initial reaction but settled down after cuddling on the big love sac. I put in Mary Poppins and Claire fell asleep. After she woke up, we could tell something was bothering her, but still couldn't figure out what. Her arms and legs seemed fine. But she wasn't turning her head to the right side and was in A LOT of pain when we picked her up or moved her from one place to another. She also wouldn't walk.

Benson went to a friend's house and we took her in. The doctors examined her and thought she might have broken her collar bone. But after doing x-rays, they determined that wasn't it. We're all still stumped as to what exactly is wrong. After a little pain reliever she seemed to be feeling better and was walking around in the emergency room. That made us all feel better, but STILL whenever we'd pick her up, she's in major pain. If you scoop her from her bottom and pick her up that way, it is better.

The other thing that could have happened is she could have broken a rib. It's not likely that she would break a rib from a short fall off a stool, but with this little one, we're not ruling anything out. They decided not to x-ray the rib cage because of the number of x-rays they would have to expose her to; and if it was broken, there's nothing we'd do different anyway. The other possibility is that she could just be bruised and hurt. It seems to me that she in a lot more pain than just being bruised, but who knows.

They sent us home and we'll kind of just see how things go over the next few days. If anything changes or gets worse, we'll go from there. The nice thing is that she's at the hospital every day anyway, so we'll see how things go tomorrow. For now, she's comfortable walking and sitting still. Picking her up is when she's NOT okay.

Poor princess. I was just sick that we had to go to the emergency dept again. But am SO grateful that it doesn't appear to be anything major....no neck or back injury and not another cast. How we PRAY the transplant comes soon! When she's ready, when the organs are right for her, I'm sure it will come. Patience, Natalie! I just want to keep her safe and healthy until then!

In the ER

11 comments:

Tasha said...

Oh, we pray for all of you!!

Mary said...

That is truly sad news...I hope that she feels better tomorrow and that her transplants come soon!!! We send our best wishes your way!

JoAnna said...

Oh Natalie! I had this feeling that something was wrong when you weren't at enrichment. I'm so so sorry! Let's pray that transplant on!!!!!!!

Adrianne said...

So sorry for you all but mostly for that dear little Claire. The things we have to endure in this life. The only comfort is that our Heavenly Father hand is in everything, and you are absolutely right, the transplant WILL come when it should.

Prayers for you!

Philip, Melissa, & Summer said...

I hope she gets them soon too. It makes me think twice about complaining when I get a paper cut. She is amazing.

kel[E] said...

oh sweet little girl.

Praying.

<3.

Auntie Em said...

Prayers for Claire that she recoups quickly, and prayers for all you to continue to have strength and courage as you await news of a transplant. God Bless.

Unknown said...

Sorry guys. Poor little angel. Since prayer is the only thing we can do to help from here- that's what we'll keep doing.

2sisters said...

Poor Claire! Keep praying for you guys!
teri

** Adrian ** said...

OOOH! I'm SOO sorry! What a little angel. She has been through so much already. . . I really hope that transplant call comes very soon! We'll keep praying for you all! GET WELL SOON, Claire!! xoxo

John & Shauna said...

oh poor Claire. I hope she gets feeling better soon. We will be a little more specific in our prayer for Claire. I hope the transplants come soon. Hey, I was just wondering. I don't see the auction on a place to bloom. Am I missing something?