Latest Developments

Rosalie is well into the swing of rehabilitation. I definitely feel that there is more structure to her days at the hospital than she ever had at home. I should note that Rosalie is still hospitalized because of this intense rehab - it is not the chemo that is keeping her there. Essentially, she is recovering from brain surgery. Her condition can be labeled posterior fossa syndrome (see link for more details). But the word we keep hearing over and over again is "reconnect." Her motor functions are actually there - it's just that the brain is learning how to coordinate these functions again.

Here is a list of recent developments:
-holds head for extended periods of time
-extends arms on cue
-grasps objects
-swallows several bites of puree (like pudding or yogurt)
-nods "yes"
-waves "bye bye"
-focuses on task
-repeats some words
-shows better expressive communication (eg. Occupational Therapist: "Do you want to play with Play Dough?" - Rosalie: "Yeah.")
-tolerates medical procedures such as blood pressure and temperature without crying (which she used to do)
-has said the following: more, da-da, ma-ma, up, Elmo, yeah, no

I feel a bit like one of those parents who likes to give the play-by-play of their child's every move. But imagine for just a moment that your child was perfectly normal, feeding herself, communicating well, playing with toys by herself, dancing, and singing - and then she was lying there, limp and flaccid, unable to focus her eyes, unable to swallow, unable to respond. It brings regular human function into a new light. So I hope these new developments do not bore you, but help illustrate what this process of recovery entails.

In chemo related news, she has lost most of her hair besides her eyebrows and eyelashes. Many of you are familiar with why this hair loss happens, but for those of you who aren't . . . Chemotherapy attacks rapidly dividing cells (like tumor cells). In killing the bad, it also kills the good - such as blood cells, hair cells, and mucosa (the stuff that lines our entire digestive tract). So there is my brief version:) Her mood is markedly better now than the first week of the cycle (each cycle is 28 days). She is still neutropenic (low white blood cell count), so we continue to take precautions to make sure she does not get a bacterial infection.

Most importantly, Rosalie is happy. She maintains a sunny disposition and shows enthusiasm in her rehab sessions. Keep up the good work, Rosie!!