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, October 3, 2010

Oct 3 9:00 pm

Wow. It's been a week! Time flies. I've been on the verge of getting sick almost all week. But this weekend, my body pulled through and the sickness passed--without the main wrath of the sickness ever getting me! But it certainly was enough to wear me down for the week.

Anyway, Claire is doing great! Her blood work from this past Monday looks good. Her kidney function remained the same and the BK virus level in her blood came back "undetectable!" That is awesome. We were so excited about that. She still had one more round of antibiotics they wanted her to have this past Friday so we hung out for 3 hours at the hospital for that. But hopefully, that will be the last of it. She has a kidney biopsy scheduled for two weeks from this past Friday and that will determine if the BK virus is truly gone and the status of the kidney. So we're pretty much good till then (hopefully)! Blood work every Monday, but nothing major.

We are attempting to potty train Claire...as of yesterday. She did pretty good the past two days, but I think her problem is that she gets so much fluid throughout the day that she has to go ALL the TIME! If we didn't set a timer and have her sit on the potty every 10 minutes, she wets her pants. But if we are consistent about having her go that often, she was fine. Hum...can't stay home and put her on the potty every 10 minutes all week long....but we'll keep doing the best we can and hopefully she'll begin to 'hold' it longer the more practice she gets. It would be nice to have her potty trained before the new little one arrives.

Benson can ride his bike without training wheels officially now!! I don't know what I was thinking, not taking my camera with us to the park, but he is a pro. This is only his second time trying and he can seriously do it soooooo good!! He was thrilled!! We'll have to get a few more riding days in before the cold weather sets in. AND Benson is going to start taking piano lessons. A good friend of mine teaches so we're just going to try it a few times and see how he does. He is actually really excited about it and can't wait to learn. We'll see how he does....if he's too young, how his attention span is, how he learns from her, etc. etc....and go from there!

Random pictures:

Grandma Susan made this skirt for Claire's birthday! SO darling!!


I got to go with Benson's preschool class on a field trip to the apple orchard. We had a great time together. On the way to pick up Claire after school was over, I asked him what his favorite part was...expecting the corn maze, farm animals, or picking his own apple to be the answer. But the sweetest boy simply said, "just being with you was my favorite part, Mom."



The kids and I went with some friends to two homecoming parades. Claire hated every minute of it. I think the loud noise from the band really set her off. She clung on to me the whole time and put my hands over her ears. "I want to go home with my dad," she said over and over again. BUT Benson had fun. He got a TON of candy!!!


Our new activity calendar. Too many days go by with me trying to remember what fun the kids and I had together. They play so well together and I often feel the pressure of getting so many other things done around the house that there are days I can't recall actually sitting down and playing with them. A friend of mine gave me this idea, with the saying "if you fail to plan, you can plan to fail," behind it. So the kids and I now have at least ONE activity every week day scheduled to do together. Benson and Claire helped me come up with the activity ideas and they get to choose what we do each day. We are all really excited to have a plan for fun-together-time at least once a day!!

My tummy and baby are telling me it's time to eat again. Already had dinner & dessert and a bed time snack...so this is what we call make-it-through-the-night-without-waking-up-starving snack!!

2 comments:

Unknown said...

Glad to hear that you all are doing well. That will be exciting for Benson to be taking piano lessons.

The pictures are great of the kids.

Tasha said...

I love your cute activity chart!!! What fun memories you are making! I am glad that Claire is doing well!!