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.


Friday, January 15, 2010

Jan 15 9:00 pm

What a busy day! In and out ALL DAY long!!

8:00 Labs at the hospital. Flush her hemo catheter and change the dressing.

9:15 Get home, go potty, and leave Claire with Grandma while I go to the hospital again for a Pharmacy Consultation. They figured Claire would be more of a distraction than anything by coming with me and since she's not the one giving meds, Claire got the hour off!! Lucky girl. I felt awkward and naked walking around the hospital without a stroller! Weird.

11:30 Pick up Benson from Preschool on my way home from the hospital. Run into Walmart to let Benson pick out a Red Box Movie for him and Grandma to watch while Jared, Claire and I take Jared's dad and brother to the airport in Minneapolis.

12:30 Finish eating my sandwich in the car as Claire and I drive back to the hospital for her appointment with the kidney doctor. All her labs still look great! I talked with the doctor a bit about the study they want Benson to participate in and if we can get a few kinks worked through, we're planning on having him participate. There are a few challenges Benson will have to adjust to but nothing major...more on this later when we decide for sure.

1:45 Home, potty, change diaper, and get back in the car (with a yogurt to finish off lunch) and head to Minneapolis to take family to the airport. I tried to sleep in the car, but I also just so happen to be sitting next to Claire so I could give her milk on the way....and she would have NOTHING to do with me sleeping!!! She would tell me good night when I told her I was going to take a rest, but then a few seconds later all I would hear (over and over again until I acknowledged that I was actually awake) was "Good morning, Mommy. All done sleeping. Helllllllo!" That's exactly what she says when she wakes up from a nap or in the morning! Too cute. SO tired. But cute none the less.

Jared and I wanted to go to Minneapolis together because we've been looking for a toy storage container for a while together and just haven't found what we wanted. We wanted to look at IKEA and we found exactly what we were looking for! It was fun to get out together too! And Claire just gets to come along for the milk! Can't hardly take two steps away until another hour passes and it's time to fill that tummy up again!

Benson and Grandma had a great time at home and we're all exhausted now! How excited we are that tomorrow is Saturday and we can all sleep in! (hopefully...children pending).

What a blessing it is to live so close to the hospital!

3 comments:

Unknown said...

It is great to see you guys on here less and less. You actually get to do "normal" things instead of to the hospital, home to the hospital home. I am so glad that Claire is doing oh so good! in the last 2 1/2 years what a roller coaster ride your family has been on!

Keep you the good work Claire.

Peggy
Houston, TX

2sisters said...

I've been away for a few days. It's so good to see Claire doing so well!
teri

R said...

That's great!
Maybe next time, since you live so close to the hospital, you should check out the Minneapolis airport shuttle that picks up right outside St. Mary's and the Kahler. It's not too pricey compared to the 3 hour trip in your car.
Nice to have family visiting. . .