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.


Wednesday, April 25, 2012

Home again



We're HOME!! It feels so refreshing to all be home together this evening. We even all literally got a breath of fresh air on a nice walk after dinner and it was soooooo great to be outdoors instead of cramped in a hospital room. Ahh.

Claire was completely thrilled to be greeted by a new double stroller for her babies upon her arrival home! Between Grandma, Grandma Great, and the post-man, it was a fun surprise to have it arrive the day she got to come home from the hospital! So much for resting and taking it easy for the rest of the day, as per doctor's request. Does pushing 2 babies in circles around the house count?!? Claire feels great and is happy to see the comforts of home again.

Everything went great today for Claire's procedure. She was first case this morning and was out and back in her room by 10:00! A record for sure. The doctor did find that there was some deposits/build-up lining inside of the bile tube which quite likely was the culprit for making her billirubin go so high. He stretched the bile duct out (it looked pretty much like it did last time he did it) and placed a new tube in. They also decided to keep her drain line open to a bag for a week just to make sure things are flowing in the right direction. They aren't sending her home on any antibiotics...(to spare a long explanation)...if she gets sick again, we'll know she needs them and make that adjustment. So hooray! Hopefully it all works out as planned and we stay hospital-free for the next week. Labs again Tues. to see how things are looking.

Today ended up being the lucky day to be a the hospital. There was a Spring Carnival for the children and mine LOVED it!!

They played pin-the-glove-on-the-nurse, IV bag toss into the bed pan, went fishing, did arts and crafts, enjoyed snow cones and popcorn, and even got their face painted!!





Claire even did a little painting of her own on her fingernails with the craft paint!
Thanks for your prayers...dinners, babysitting, hospital visits, love for our family!

2 comments:

~adelle said...

I love that last pic of Claire. She is a cutie. Glad you are all home safe and sound!

Grandpa Terry and Diana said...

I am so glad that things went well today. And that you are all home. With those three young kids it is always good to be home and to have some time for just your family.

Weather should cooperate and there should be more fun warm days outside.