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.


Sunday, October 18, 2009

Oct 18


Oh how we love Sundays. It truly is our day of rest. Claire (and the rest of us) get our one day off from dialysis today. We really get to spend normal family time together, all day long. And we love it! We took Claire to sacrament meeting today and she kept saying with a smile of her face, "urch! urch day?!" Jared took her home and I stayed with Benson for the rest of the meetings. It was so wonderful to be gathered with people who love us, pray for us, and have supported us through these last few weeks. We have indeed felt the influence of prayers that many have offered in our behalf. But to actually be surrounded today by a small handful of those who represent a much larger group of people who love and pray for us was uplifting, encouraging, and inspiring! Thank you ALL for your prayers, service, and love for our family.

Claire is such a happy girl. That is until 5:00 a.m./p.m. rolls around. She just sees Jared getting the shot ready and she tries to hide. When we get her laid down and start rubbing the cold alcohol wipe on her leg, she starts crying for mommy. I can't give her the shots. Someone still has to be the good-guy, right?! Good thing my hubby is willing to do the duty. Her poor legs, though. She has had 13 shots of Lovenox heparin and her little legs have got to be somewhat sore from so many pokes! They definitely bruise where the shot goes in. Poor princess. She quickly forgives us and still loves her dad, in spite of the owie. Kids are so resilient.

But like I was saying, she is a happy girl. We've heard her randomly bust out a good "EE I EE I OOOO" today! She's actually singing more than she is talking right now! We love it! Music to our ears, literally! She been walking on her own all day and still hasn't seemed bothered by the clot. We are anxious for the ultrasound tomorrow to see how things are looking. I know many have been fasting and praying for this clot to go away. Thank you. I know our prayers will not go unanswered.

4 comments:

Anonymous said...
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Beth said...

I was gone for a few days...so thankful to read so much good news. I hope tomorrow continues this trend. Keeping you in my prayers.

Beth in Oregon

~adelle said...

She looks so darling all dressed up! So, glad you got a day off. Today is a big day. Let us know for sure how her leg is doing. Let's hope those shots are doing their job! Way to go Jared for being the tough guy! I am sure Natalie appreciates it! :)

** Adrian ** said...

She does look DARLING!! I bet it's wonderful to have a day off! I'm so glad to hear that her leg is improving. I've been praying specifically for the clot to GO AWAY! I'll keep praying!! Her poor little legs, I bet they ARE sore!! Jared, I'm so impressed with you for giving Claire her shots. I would NOT be able to do that. You are such a great Dad!!

The photos from the last post are SOO cute!!! It looks like Benson had a blast playing in the leaves!! We need to do that here, too. . . I'm just waiting for the rest of the leaves to fall off my trees so I don't have to do it twice!!

I'm excited to hear the news from the ultrasound!!