Alexis escaped BCH yesterday and has found a way to
piano!!
We got her to stand and walk in walker about 9’ before
she said “enough”
Then we rewarded effort with piano time!!
We will progress piano time with less and less support
and eventually get her back to sitting at piano bench (her baseline).
Before her surgery, she always leaned right - and would support her leaning body with her right hand on the ground/surface she was sitting on. Now that she's had her back repaired, if she's sitting on a surface (so far bed) - she puts her left hand down. Basically her "center of mass" of her back is too far left for her muscles now. And it probably doesn't help that she's on oxycodone and Valium - that she might have a hard time finding her body in space.
After piano time we are going to try to some "Red ball" time. Probably for now, just sitting on mom's lap. We will progress that to sitting on red ball with someone holding red ball from sliding around without her.
Her night nurse (me) got a good 1.5 hour nap while she had lunch with dad. That was a nice relief. Getting up 3 times for 3 different meds at night is no fun - but we are looking for a "boring" recovery - where she is doing awesome in a very boring way.
She already shaved 2 days off the hospital stay - so we are hoping each day gets better and each day gets stronger! Yay Alexis!!!!
Catherine
