Day 13, Day 14 and Day 15: New Normal

I am back at work (mostly from home). There is a combination of reasons why these 3 days are thrown together in one post.

1) As mentioned, I am working 
2) I am not with Charlie so not seeing his activities and his progress to report 
3) My updates from Aly are that things are not particularly varying from day to day

Tuesday saw him move from room 27 to room 26. 27 is by a door, a nurses' station and the therapy manager's office and it's a bit busy. Aly knew 26 was opening up and requested a move. We are all happier in 26. Tuesday also introduced us to the "stander", a device that let's him stand without putting all of the weight on his legs since they are not ready for that yet.

Wednesday added Music Therapy to the mix, which Charlie reported that he "actually, quite enjoyed".

Thursday was our first IRU family meeting. I wasn't there (work) but Aly said it was really good. The attending leads a group of care providers in a meeting with the family to discuss Charlie's progress and goals. My main takeaway is that they have concluded that there was not a lot of underlying strength in his legs and that means a longer duration of work to bring strength to his legs. The whole thing with this surgery was about the spasticity in his legs affecting his leg muscles. Cut the sensory nerve cords that are creating the stiffness and "tone" in his leg muscles, then help him build muscle strength. The "underlying" strength I mentioned earlier has been being assessed since the surgery. The conclusion is that there's a lot of work to do on the legs.



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