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, December 20, 2009

Dec 20 1:00 pm

The best news of the day is that Claire's oxalate is 9.4! That is so good! Normal oxalate is below 2, but compared with the 80 ish that she was before transplant, that is awesome!!! Our kidney doctor said that the 6-day/week dialysis we've been doing for the last year and a half has really paid off with a great number like 9.4!! That new kidney is certainly doing a great job of getting rid of oxalate without needing extra help from dialysis. Her urine output has stayed pretty steady around 60 ml/hr with the diuretic. Hopefully the output will keep going higher and higher to slowly get more of the fluid off.

She's still sleeping, most of the time. There shouldn't be a whole lot else going on today. Benson, my mom and Grandma Waite are on their way out with a yummy ham dinner. They'll spend the rest of the day here with us and it will hopefully be a relaxing Sabbath.

She's only able to slightly open her eyes because of how puffy her face is. That has to feel strange.

7 comments:

John & Shauna said...

Such great news! I hope you are able to enjoy the sabbath. How is the other family with the other half of the liver doing? I wish they had a blog so we could see her progress too. We pray for her too.

Six divided by two..... said...

Amen. We will continue to keep your angels in our prayers.

Ryan & Keri said...

We're so excited to hear about the oxalate level! That is amazing progress! And what a blessing to have your mom, who is so needed right now, and your grandmother with you. We love you guys.

Jenny said...

Natalie, I know I've never met you (yet), and yet I continue to peek several times a day at your blog, just to check in. Claire and your family are in my thoughts constantly! I'm always bugging Nate, my husband (a surgery resident), asking him what this or that means.

I am so happy for you all! Your family is an amazing inspiration, and you certainly have brought the real meaning of Christmas--a spirit of love, gratitude, and sacrifice-- into our hearts.

Thanks, and best wishes for continued health and healing for little Claire!

Alli said...

Hi guys...it's Alli or Lolli as Claire would say. I am so happy to hear the good news today.

Philip, Melissa, & Summer said...

Glad to hear such great news.
Merry Christmas from Canada!

~adelle said...

I hope her oxalate keeps going down! That is so awesome. I hope she can loose some more of the fluid soon. Poor little puff cake. I feel so bad for her. She is so beautiful. Loves from us!