Bittersweet Day

Alistair has had 3 solid days of therapy. He has done a great job. We find he is more active, alert and motivated in the morning. But can also be more so after about the 2 o'clock hour. He is sleepy around lunchtime and usually falls asleep for a period of time. He has done great and works hard, which really isn't surprising to us! His PT has consisted of standing on the tilt board the last 2 days while playing a game. He got up to about 70 degrees today. We were going to try a bit higher, but he was beginning to lurch forward as he was getting tired. His OT has focused on arm stretching and trying to use his hands to do tasks like hit balls off the table to the side or push buttons on or off. His speech therapist has mostly been focused on his eating (he got to return to eating pureed food and honey thick liquids after figuring out the coughing was cold-related and not aspiration!) as well as non-verbal communicating through using his eyes. We have become quite adept at wording things in terms of yes and no or 2 choices. His therapist has been playing hangman with him and using an ABC board where he looks at the quadrant the letter is in and then looks at the color the letter is and then we can figure out what letter he is choosing. I have yet to figure out how we use this to "talk" with him without it taking 30 minutes for a word...and he seems fairly annoyed with the lengthy process as well. Today he had the education therapist (teacher) come and co-treat with speech. He had Alistair read a passage and then answer multiple choice questions using a white board with A, B, C, D written on it. Once he figured out the answer, he would look at the corresponding letter. That seemed to go much smoother and illustrated to us Alistair's cognitive skills are quite in tact and not really lacking.

Alistair is still in contact isolation and will be until he becomes asymptomatic and THEN the 3 day countdown takes place (we thought we were done tomorrow evening). This seems like such overkill for a cold, but I get that a cold for one is worse for another. The other issue is that Alistair has had a cough since he was extubated which has yet to subside. He certainly had an increase in coughing on Tuesday when all this hubbub began, but ever since Tuesday his cough has returned to what it was. He has had no other cold symptoms aside from the cough. The worst part is that he is stuck in his room for therapies (no using the gym or venturing to the play room) and we can't go outside to the patios or gardens. Until we get cleared, children are not supposed to visit. We can make an exception for his sister, but she is supposed to gown, glove and mask...which I am sure she will LOVE! 

Today Seth's parents came up to be with Alistair so we could join my family for my Dad's retirement party from MacDonald Miller. It was at the Museum of Flight...one of Alistair's favorite places. It really felt wrong to be there without him, like we were cheating on him or something. Tomorrow my parents, Jeff and his family and Gillian are heading south to go to the beach house my mom rented for us all to gather and celebrate my Dad's new chapter. Alistair was SO looking forward to this, more than anyone else and now we are forced to stay behind. Nobody is happy about this and of course we haven't mentioned this to Alistair. I am sure at some point, when he is speaking more, he might bring it up. But like everything else that was changed this summer, we are getting a redo...and this will be on the list. So congratulations to my Dad for finally getting to do what he wants to do and to enjoy life outside of the 9-5 grind. Luckily for us, he sees this as great timing to be there for Alistair and help him heal and get back home.