July 8, 2006

Hello, friends!

Rosalie has been making progress in PT/OT and Speech. It is a little difficult for her to give 100% to each session because frankly, she doesn't feel 100%. She has definitely vomited more and appeared more nauseous in this second round of chemo. The nurses say that chemotherapy can have a cumulative effect on the system. Her white blood cell counts are looking good, but her hemoglobin was down which made her a little lethargic and pale. She is receiving a hemoglobin transfusion as I write this. Despite it all, her general disposition is good and she still loves to act silly.

One major transition that we will face over the next several weeks/months is moving away from her NG tube. We realize that this transition is more of an art than a science because it seems like every nurse, therapist, and doctor has their own take on the best way to wean her off the tube feeds. She cannot safely swallow the quantities needed to remain nourished, but if we give her too much food through the tube then she will not be hunger-driven to eat at all. There are lots of variables here, so we'll just have to ride it out and do what seems best for Rosalie. We should definitely note, however, that she ate an entire popsicle the other night! This was a major breakthrough - by far the greatest quantity she has consumed at one sitting. Hooray!

I daresay her speech is close to where it was before surgery. Her voice itself is not quite as clear, but her expressive abilities have improved leaps and bounds since those first weeks post-surgery. Her fine motor skills allow her to engage in many activities that were fun before surgery (like coloring and Play Dough), but her gross motor skills have a long way to go. Her therapists continue to work on head and trunk control. I've been impressed with her ability to try rolling to one side from her back and her ability to hold her head up from a prone position (face down). I don't think she would have been able to do that last week.

We will reevaluate Rosalie's rehab goals at the beginning of next week with Dr. Houtrow and the therapists.

In the meantime, Rosalie continues to receive small doses of chemotherapy each night - pray that this treatment finds any remaining tumor cells. May they never, never, never come back.