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.


Sunday, March 21, 2010

March 21 9:00 pm

We had some fun this weekend. We visited Austin's famous SPAM museum! We all had a great time! Benson already wants to go back but it's kinda of a once-a-year type thing for us. I have never had a piece of pork out of a aluminum can before so we just had to buy one. So breakfast this morning was scrambled eggs and hickory smoked Spam! It wasn't bad. I love bacon and I love ham....and Spam is kind of a mix between the two of them....so I liked it! When we asked Benson what he wanted for lunch he requested more Spam! So I guess he liked it too. It probably won't be something we'll eat every day/week/or month...but certainly something to add to our menu every now and then.


Army guys handing out Spam. Benson loves anything army right now!

We collected Benson's 24-hour urine collections this weekend in preparation for the Oxabact research study. He did great and really likes peeing in the cup! Unfortunately, though, he ate McDonalds after our Spam Museum trip and got a little sick to his tummy. He ended up throwing-up his dinner and didn't eat/drink much for the rest of the night. Hopefully that won't mess up the 24-hour collection we were doing that day. We'll have to see what the doctors say tomorrow about it. No more McDonalds on important days like that!! He'll meet with the doctor later this week for his beginning-of-the-study physical and then I believe he'll be ready to start taking the drug soon!

Claire's discoveries for the week: While I was changing her diaper the other day she was pulling her feet towards her and found something interesting. She discovered the sock lint in between her toes and was very perplexed about the whole thing! She furrowed her brow and just studied those toes and that wired white stuff for quite some time. Then she looked at me and all she could say was, "something, Mom, something....." "Should we go get a rag and wash it, Claire?" "Yeah, Mom....something."

Second AWE HA moment for Claire: She was playing with some teaspoons while helping me wash the dishes the other day and ended up carrying the teaspoon around the house for a while and was exploring it. The next thing I noticed she was staring, deep into the spoon and got that perplexed, furrowed eyebrow look again...and just kept staring into the spoon. Then she said, "upside down, Mommy, upside down???" Talk about an observant, inquisitive 2-year old! She quickly showed Benson and Jared how they were upside down when they looked into the curved part of the spoon. She was thrilled to show off her new discovery and even wanted to stand on her head and look into the spoon to see if she was still upside down! She didn't let go of that teaspoon for a long time! How excited she was to see that it worked with all the spoons in the drawer!

2 comments:

Melissa said...

My gosh, they have a museum for everything! And that Claire is one smart girl!

~adelle said...

I got sick at Mc Donalds once when I was a kid. I still remember because it was the only time we EVER ate there. (and I had been so excited to get a "kids meal.") Poor guy.

Libby figured out that spoon thing THIS MORNING at breakfast. Isn't that funny.