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, February 1, 2010

Feb 1 8:45 pm

Claire's rash is just confusing all of us. It kind of comes and goes. One day, Sunday for instance, it was terrible! She couldn't sleep and wouldn't stop itching unless she was completely engrossed in something. And there's no way to tell a 2-year old to stop itching. It just doesn't happen when they're that young. BUT then today, it was 90% gone! She was itching first thing this morning and then just a little before bed, but hardly nothing compared with the bad days. Claire's doctor went over all her meds and is having us stop one of them to see if the rash goes away. I suppose time will tell if that works...and hopefully it does! So not fun for her to be bothered by an annoying itch! Labs will be in the morning so we'll see how her liver function is tomorrow.

It was fun to get out and get cold tonight! It's so fun to have a sledding hill right in our back yard! We took Claire out in the snow for the first time and she wasn't too sure about it. We took her on the small hill first and she didn't cry, but didn't want to go again. We did get her to go down the big hill, sandwiched between Jared and I, but she wasn't thrilled about it at all. When we asked her if she was having fun she quickly responded with a NO....but then when we got inside and talked with her about it, she said she loved it and was so proud that she went sledding, just like Brother!

I just had to show off these beautiful quilts Jared's mom made for us. She is so incredibly talented! We love them...and it so fun to think of her and how much we love her every time we look at them! Thanks Suz!

6 comments:

Anonymous said...

Natalie-
Thanks so much for letting me hold an auction for you! It wasn't a huge turn out! But we would LOVE to donate what we made!!! I see that you have reached your goal!!! HURRAY for that!!! Do you have a paypal account that I can transfer the funds over to for you since COTA doesn't accept paypal? THanks again!!! Shannon

Jessica Taylor Blaine said...

Hello. I knew Jared and his family growing up. Hal and Susan are still living by my parents.

Had a thought on the rash. My nephew gets them when he eats oats. I was wondering if she has started eating anything new that might be causing it. Maybe eating it one day and not the next. I know how frustrating rashes can be. My husband works as a PA with Travis (Becca's hubby) he hates the rashes with no answer. Good luck your kids are so cute.
Jessica Taylor Blaine

Carey Dennis said...

Natalie!
I am SO thrilled that things are going so well! I couldn't be happier to hear that Claire had her transplants and all went smoothly! Okay, as you know, I am NO doctor, but thought I would put this in your pot to stir: red, itchy rashes are very often times reported when liver functions are elevated, and CAN be(though not always) attributable to the liver not functioning quite like it should. So, the fact that her enzymes are elevated around the time she developed the rash could be suggestive that rash is related to the elevated liver functions. Are you aloud to give her benadryl? Benadryl often helps with the itch even if the cause of the rash is undetermined. Also, our doctors often prescribe hydoxyzine to help kids with skin rashes sleep at night. It is an antihistamine also, but has a drowsy/sleepy effect (more so then Benadryl), and can be very effective for many "itchy" children who can't sleep. I am sure she is on a slew of drugs right now, and I am unsure whether or not they would even consider giving her more, or whether or not you would even want this, but thought I would mention it!

Please keep me posted!
Love Always,
Carey Dennis
davisc@njc.org

** Adrian ** said...

Hmmm...I hope they can figure out what is causing the rash very soon! I'll keep you guys in my prayers. Those quilts are SOO BEAUTIFUL!!! Thanks for sharing photos of them!

Philip, Melissa, & Summer said...

Very cute quilts. I love them, and yes she is very talented.

Jessica Taylor Blaine said...

Had one more thought. Benadryl cream is good to help with itching. Hope the dr. will approve. Good luck.
Jessica