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.


Tuesday, April 24, 2012

Tuesay

Today we just hung around and basically waited for tomorrow to come. Only news is that her blood cultures are negative (yeah!), urine cultures are negative (yeah!), and the procedure is still on for tomorrow (sometime) to see what's up with the bile drain line. Hopefully we'll be home after that.

It seems like the "outside" world should stop when stuff like this is going on. But no. The mail still comes, laundry piles up, tummies get hungry, babies get tired (and moms and dads too), and for some weird reason, the house still doesn't stay clean! Oh well. At least the things that matter most are taken care of. That's what counts.




2 comments:

Grandpa Terry and Diana said...

Looks like everyone made it through Tuesday.

The kids make the best of where ever they are and that is a good example for all of us follow.

Brian and Stacy said...

Natalie, I thought a lot about you while I was in the hospital last week....even though I've never met you. I just have to say that you're one tough cookie! I don't know how you do it and keep it together all the time with all of the hospital visits and all of the unknowns. You are one amazing woman and family! I'm so glad everything is going well with Claire! It's about time these Claire's had a break for a while, so I hope yours gets to as well! We love looking at your kids' smiling faces! They really area adorable!

Also, it's crazy to know that a toddler is a better nurse than I could ever aspire to be. :)