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, December 21, 2009

Dec 21 3:30 pm

Things have improved. The combination I mentioned in the last post is working wonders to get fluid off! In one hour, she drained 500 mls!! That's a lot. A ton. Huge. Almost too much all at once. So they stopped the lasix and diuretic and will reevaluate again this afternoon to see what dose or how often she should be on it. We want the fluid off, but not quite that fast. She drained approx. 500 the first hour, 400 the next, and 300 last hour. So it's going down, but still, that's A LOT of fluid to drop in 3 hours. But what a difference Clarie is feeling already. She sat up with Dad and read a few books, could actually open her eyes all the way, and even had music time with a music therapist. She's feeling much better already. Still a ways to go and not what we'd call comfortable at all yet. You can see that by just looking in those eyes. But she's soooooo much better than this morning and actually starting to look like herself again! At least now we know what works for her. Just got to keep in all in moderation.

Her new words: me bye bye. go. bye bye. all done. all better.

You certainly can't blame the sweetest one for feeling like that.

10 comments:

Unknown said...

Must be frustrating. Can't get enough fluid out- then too much. Poor little angel. It's miserable just to have swollen ankles, let alone being that swollen all over.

Bloom said...

oh...i'm so, so glad the fluid is coming off. hopefully it just gets easier from here.

thanks so much for all the updates, natalie.

Mary said...

Awesome! So happy to hear that she has some of that fluid gone! You are in good hands out there! And she looks so sweet with Daddy...what a trooper she is!

John & Shauna said...

It's amazing how much better she looks. It's good to see her cute eyes again. I love the picture!

Auntie Em said...

So glad to hear that Claire is feeling a little more comfortable. You must be so relieved.
Her "new words" show just what a trooper she is. She's ready to get on with her life. Such a doll!

Krisie said...

I'm so happy for Claire and your family. So glad to hear she is improving!

{:miss v:} said...

Good job Claire! Glad to hear she's feeling a little bit better! Good to see those eyes! ;)

Megan said...

I think I just pee'd about 500mls!

Ryan & Keri said...

I love her words. What a precious girl! So glad that the fluid is coming off.

Rachelle said...

Wow, she is an amazing little girl...but you already know that. We are so happy for Claire!