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 31, 2009

Dec 31 11:30 pm

It's hopeful that today was our last full day at the hospital. If everything keeps going as planned, she should be able to go home tomorrow!

This afternoon, for the first time in 13 days, she wasn't connected to any tubes or machines. When we got her out of the bed she didn't want to walk at first. But that quickly changed. She was running around within the hour...a little wobbly, but that didn't stop her. We took her for a ride in the pink car and then she of course wanted to start pushing it around herself. She's feeling and looking so great!


We've been feeding her at the rate she needs to be fed and so far today, she's tolerated it well. If she can make it through the night at the same rate, she'll be good to go. It's a lot of fluid for her and requires us to feed her every hour, but the alternative is her coming in to get IV fluids every day for 3-4 hours. Not so much our preference! So hopefully her tummy will keep up with the extra fluids and that kidney will just keep peeing it out like crazy!

Home is a good place to start out the new year. 2010 is going to be both happy and new for our family!

Saying night night to brother on the phone. He might be the happiest to have us all home for bed time!

9 comments:

Auntie Em said...

Oh what a wonderful start to the New Year! Congratulations to all of you!

Eva said...

That's just great! I sure hope you can go home soon. So not fun being in hospital just for fluid.

I wish someone would teach YOU how to give her the fluid IV during the night, if she can't tolerate it through her G-tube.

Would make things a bit easier :o)

Happy New Year

Ann said...

That is fantastic news! How nice it will be to be at home for the new year. 2010 looks to be off to a great start for your family. Best wishes.
Ann

Ryan & Keri said...

I'm so happy for your family, Natalie! What a miracle! Heavenly Father really does answer prayers.

Megan said...

VERY VERY exciting to hear. What a way to start a new year...you literally are starting a new life.

Amy said...

Happy New Year! How great to be tube and wire free for a while. :)

I hope as I sit here you are in the process of being dismissed for HOME! :)

kel[E] said...

<3. Happy New Year!

Shellie said...

Wow Natalie! I am amazed and so grateful for how well Claire is doing! GO CLAIRE :) Happy New Year!!

Anonymous said...

I have been following your blog for some time now, even though we don't know each other my heart goes out to your 2 sweet little kids. I hope everything is going great with sweet little Claire and that your family is home soaking up the joys of life. Hope 2010 brings joy and happiness.