A Positive Day

Alistair had a great day yesterday. After spending much of Wednesday emotional and uncomfortably tremoring and having a visit from Neurology who tweaked his medication, he spent Thursday relaxed, able to better participate in therapy and actually spent some time smiling and laughing. We ended up having one on one nursing yesterday and last night, so Seth and I were able to sleep at home again. I will feel better about this as we do it more and he has more successful nights. He did well last night and only had a few minimal wakings. We are trying to reestablish his circadian rhythms after all the moving and time zones, etc. I think he is doing fairly well with this and seems to be back to a decent one for now. He usually crashes around 7:30-8:00, wakes around 6 and then sleeps on and off until 7. We are trying to get him up by 7 so we can start the morning routine...which includes cartoons! 

His occupational therapist came in around 8:30 to work with him on eating breakfast. He is still having a bit of an issue with involuntary arm movements and she did great job helping him establish control. We use the term calm body and that helps him to focus his mind to bring his arm down to a neutral position and not be in the way! So they worked on eating oatmeal and bringing the spoon to his mouth. He was doing a great job with this. Then the physical therapist came in with a tilt table. We got him on it and eventually brought him up to about the same degree as he had done last at Mayo. He seemed a bit nervous, like he wanted to be done. We asked him if he wanted to go back down and he said, "no!" That was a great thing to hear that he wanted to keep working! After we were done on the table, we got him into his wheel chair. Eventually we took him up to the roof to see the Blue Angels. They weren't flying over the hospital anymore, but we saw a few bank around at the end of the lake. We will have a few more opportunities to see them over the next few days I am sure!

Lunch was a rousing success. He didn't get a chance to eat a ton of his breakfast, so I think he was hungry! After lunch his speech therapist came and we played a game and then worked on some non verbal communication skills to ease frustrations with communicating as we work toward more verbal skills. A couple of rehab doctors came in and gave him an exam and spoke with us about his impending admittance into the in-patient program. It is a fine dance of acceptance by them and by the insurance. Right now we are waiting for the word from insurance, but Seth is keeping them working and moving them forward. We should know this morning and are hoping to be moving over there by lunch time. If it doesn't happen today, it won't happen until Monday. We would prefer it happen today for a number of reason but mostly because he will probably need a day or two to recover from the transition again and the weekends in in-patient are less scheduled and busy than the weekdays. 

The rest of the day included a visit from Papa and Nana as well as Uncle Ethan. We all took a stroll with Alistair and showed them the rooftop garden. We are going to need to find a few others places to visit...maybe today we will explore a bit more. When everyone left, we came back to the room for dinner and watching cartoons. Alistair loves Teen Titans Go! and our friend Jason, whose kids also love it (as does Jason!), went and bought Alistair a few videos of the show as well as a couple of others. It is funny and he smiles and laughs and it is so awesome to see and hear. We also had a few funny things occur yesterday and were making jokes about, which caused him to have some genuine bouts of belly laughing...almost akin to how Alistair laughs when he really gets going. If you have ever been with Alistair when he has been struck by a serious case of laughing, it is great! His response time to a funny thing and him laughing is almost instant now, which is awesome to see. 

We tucked him in before we left last night. We never told him we weren't staying, but he read between the lines and tried to get upset. We assured him he was safe and reminded him that at home he sleeps alone in his room (but that his nurse, who he had the night before, would be with him). We also told him all the rooms around him were full of kids who were also sleeping alone (a bit of a lie!) and compared it to being at camp! Hopefully camp is more fun, but I think he got the point. He seemed to be okay with that, either that or he so tired and couldn't stay awake another second. Either way, he went to sleep and we slipped out. 

We were remarking last night about our day. I never had an emotional moment where I had to choke back tears or needed to take a minute to compose myself and Seth said he never caught himself having to talk himself into being positive and felt genuinely optimistic about the day. We both went home feeling pretty good about the day. Being home brings on a whole different slew of emotions though and having to get in the car to drive back to the hospital this morning brought back the heavy feeling in my chest and the emotions floating around ready to emerge knowing this is reality for a while. 

Gillian is coming home Saturday for a night. We haven't SEEN her in person since the 20th. She is currently staying with Ethan and Jen and spending time with her cousins. She is having a blast! My parents are bringing her up to us and then will be spending the night with Alistair for us so we can spend some quality time with our daughter. Eventually she will need to come home and be part of the process. But until we can get scheduled and situated, it would be more stress than anything for us and for her. 

Keep your fingers crossed that we end the day in our new room on the in-patient rehab floor.