Day 74

Lots to say today!

~Claire was NOT happy to be at dialysis today. I think she thought yesterday was Saturday because Dad took her to dialysis and she figured the next day after that is Sunday, her day off. She didn't even want to get in the crib when we got there. Of course we survived, but not as easily as other days. Oh well.

~After dialysis, we picked up Dad and Benson and went to Benson's apt. with our kidney doctor. Good new is that things look just about the same as they did almost a year ago. He does has some build up of calcium/oxalate on his kidneys, but that has been there ever since he was diagnosed with this disease at 2 years of age. The build up may have increased a little from the ultrasound last January, but they said it was hard to tell. His kidney function is still normal (yeah!) and his oxalate level is still right around where it has been, 8.2 this time. The doctor was totally impressed with how much fluid this boy drinks and wished he could teach some of her other patients likewise. So overall, things look good. She is going to alter one of his medications and see if the adjustment helps in another 3 months; but besides that, we'll just keep giving him cups of water and praying for the best!

~Our kidney doctor also talked with us briefly about Claire. Claire's latest oxalate as of last week is 89 which is right within her 'normal' range as well. (FYI: oxalate in you and I is below 2). She also told us that the surgeon and transplant coordinator has requested to have Claire's PELD score increased. That is the score that determines how soon she will get organs. She is already right up there, but they are petitioning it to be even higher. If that goes through, it will be effective as of Dec. 16. She could still very well get the organs before then, but if not, this increase in score will make it even more likely that she will get the transplant VERY soon. Sweet.

~The cast. Oh the cast. Claire hates the cast room. For those of you who have had a child get a cast removed, it is not fun. The saw they use to cut it is nothing but loud and scary for a little one! For all they know, you're going to cut their whole leg off with that thing! But she survived and we took off the big, purple cast. They did X-rays of the cast and the orthopedic was pleasantly surprised at how well the fracture was healing. He didn't expect it to look that good because of the bone issues she has from kidney failure. He told us that Claire's bone strength is 50% of what a normal child's would be. Wow. We didn't realize it was that low. They put a new cast on and this one is so much better!


~She's not used to being able to bend her knee and is very wobbly and weak in that leg (as expected). It will definitely take her a few weeks to build some strength in her thigh and to get used to the difference in weight and movement. But true to Claire's style, she'll be walking normal again in no time. And a note about the color: we were intending to let her choose whatever color she wanted, but she was very upset during pretty much the whole apt. and was in no mood to pick colors. Isn't the candy cane cute?!! She was really happy to say bye bye to our cast friends. See you in three more weeks!

~Then we hit the malls for some fun discount shopping! I got spoiled and am already excited to open my Christmas presents! Surprise!