Quick Update

Things have been quiet since we finished up the last round of chemo at Hotel SCH - literally. We've been at home without the added beeps of Charlotte's feed pump! Connor and I have slowly noticed an increase in Charlotte's appetite and we didn't jump right back into tube feeding after our admission. At our visit last week with Kristin, our lovely ARNP, we asked if the NG tube was still necessary. While she was 100% on board with eating and drinking orally, she didn't want to be rid of the NG tube too soon. We have to agree with her that it does provide a nice safety net should Charlotte not be in the mood to eat on her own. For now, though, we are enjoying family dinners and the sweet silence that comes with no pump interruptions in the wee hours.

There have been multiple visits to the hospital to check counts since we've been home. Last Thursday, Saturday, Monday, and we'll go again tomorrow. On Saturday, her counts were low enough that she needed a platelet transfusion. Thankfully, not as eventful as the last time she received one! She wasn't experiencing any fever or other symptoms, so I didn't notice a wild difference between her demeanor pre- or post-transfusion. Based on her counts yesterday, everything was trending upwards, but we'll do one more to make sure she is well enough for a much-needed dental cleaning!

We have been hard at work on our self-imposed goal of completing Charlotte's home exercise program daily until our appointment with Dr. Jesse next week. So far, so good! Sure, there may be some attitude that comes with it, but it feels good to check something off the list.

With this longer break between admissions, Charlotte will also be getting some time at school! It's not nearly enough, but every little bit helps. She came home tired, but thrilled, today.

Small victories are victories. And we like to win!