Wednesday, March 9, 2011


The views of Mom's room.

In the left corner of the bottom photo, you may notice a large blue thing hanging from the ceiling. That's an enormous crane, made from wrapping paper by my cousin. The colorful artwork in the center of the wall was done by Gary's godson and his two adorable brothers-they not only colored it, but they punched little holes alongside the pictures and their names so Mom could feel them.

Cranes hang from every available surface, and if the surface isn't too available, we improvise (duct tape, anyone?). Every time anyone walks in here for the first time, or after a break, they always comment on how beautiful it is, how everything is so colorful. They always ask who made the cranes. I'm so glad we have them all up and that the room is festive, colorful and full of good wishes. But it's also hard that Mom can't see them. Every time someone comments, I know she feels the sting of not being able to see them, to enjoy the things that bring her pleasure.

I didn't stay over last night even though it was my turn because I had an early work call this morning. And of course the night was rough: Mom had stomach cramps and pain a lot through the night. She didn't take her daily does of morphine because she was uncomfortable, and then felt the morphine missing around 1am. So, now we know, the decrease in dosage was good, but she needs it every 24 hours. When I arrived later this morning, all of that was behind her and she was about to start another intense PT session. Today she did a lot of sitting to standing transitions. They are SO smooth and strong! She must have done 10 of them and each one was perfect and unassisted. It's so great to watch her do functional exercises that will get her on the path to autonomy. She was energetic all day until the tail end of OT. She typically has PT around 10:30am and OT around 3pm. Around 3:30, after stretching her calves, she literally sat down on the bed, pulled her feet up and fell asleep. I've never seen anything like it, but she quite literally fell asleep.

I'm staying over tonight, one last girl's night before I go back to New York.

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