Sunday, March 11

Hannah's weekend has been very eventful! Dave and I took her to the Science Museum, just a short walk from the hospital. It's an amazing place, with lots to do, even if you're in a wheelchair. We left after PT on Saturday, and were gone for 5 hours. Hannah didn't want to leave the place, declaring that "the hospital is so boring." We were happy to see her get out into the fresh air, and enjoy something else while she can.

Today we were off to the New England Aquarium, a short drive from here. She was so excited to be getting out of the hospital again. She wasn't feeling so well this morning, but after a short rest, we were able to get out and enjoy the aquarium. She had a very good time there, and we were able to escape this place for another few hours.

We're trying to get her out as much as possible on the weekends right now, because as treament progresses, we know she will probably be less able to get around so well and enjoy these things as much. She was pretty tired after our trip today because we took her new wheelchair, which has no headrest and doesn't tilt back, so she is working much harder while she is in it. She took a 2 hour nap today after we got home.

Hannah seems to have gotten to the point now where she doesn't wake up in the middle of the night crying with leg pain. For the last 3 nights she has been able to get through the night without any pain medicine. She still does wake up, but just briefly, and with a few adjustments, goes back to sleep. She seems to be needing the pain medicine less and less, which is wonderful.

As I'm writing this, Hannah is talking to me about her proton treatments, she just asked me if she needs 30 treatments. I never told her this, she said she overheard me talking to another mom about it while we were at the science museum (this mom has a 2 year old twin girl who needs 28 treatments). Hannah said, "oh great, we are only on 3". She is so smart sometimes, I just can't believe it. We're off to bed, preparing for our next week.

xoxo

Kim and Dave