Today was a big day for Alexandra. The physical therapist came by and had her walk from her room to the playroom with assistance. She played for a while and then we had her walk back to her room. She cried the whole way but still walked! She needs to gain her confidence and strength back, but we know it is just a matter of time before she is running around the hallways here!
They removed her oxygen today, and her sats have stayed pretty steady around 92-94. Her chest x-ray today showed a good deal of improvement on both sides, which was very encouraging news. Her chest tube is still draining, and they have not discussed when they might take it out, so we know we are still a ways off from going home. However, we are encouraged by all the positive progress and the fact that she is acting even more like herself with each passing day.
Her rash is much better, but her coughing is still intense. In fact she has thrown up the last two nights in a row due to choking on stuff she is coughing up. As disgusting as it has been, the good news is that she is ridding it from her body!
We continue to be in awe of this hospital and what they are able to do here. At Ronald McDonald House tonight at dinner, we met a couple who came here for fetal surgery for spina bifida. I never knew such a surgery even existed, but CHOP is one of only two places in the country that performs it. They have been here for almost a month and will need to be here for another couple of months until she has the baby. Here we are at only two weeks, and we can’t wait to get out of here, and these people still have months to go.
We had the opportunity to walk around part of the oncology floor for the first time tonight while we were helping the volunteers of Ronald McDonald House deliver food to the family room it sponsors. It was humbling to see children in the hallways with no hair playing and laughing together. As bad as you may think you have it, around here you are constantly reminded that so many others have more serious problems.
We feel very blessed to be where we are and, while we have been on quite the roller coaster ride the last couple of weeks, we feel we are now on the right track towards home!