Life Got Busy

In keeping up with recent news, nurses are awesome and deserve every shred of grattitude you can give them! This has become even more evident as we have returned home and taken over full care and management of Alistair, his medications and his therapies. The weekend was great. We relaxed, we played, we did some normal every day things like Costco and grocery shopping, we cooked good food and ate well and we saw friends and family in a relaxed environment with comfortable seating and space! Then the week started and we all hit the ground running!

This week has been all about getting Alistair established with his new therapists as well getting used to new schedules and just life in general outside of the hospital. We had back to back speech and OT therapy sessions on Monday. Tuesday we went and visited Alistair's classroom and friends at school as well as saw some of his former teachers and the office staff. Wednesday he went and saw Brian, his Physical Therapist, and worked with him for an hour. Thursday he had a check-up with his pediatrician and Friday had another PT session. Monday he has a check-up with his cardiologist. Starting next week he will begin a regular schedule of Speech on Monday, OT on Tues and Thurs, PT on Wed and Sat. He will eventually also receive these services at school. In amongst all of this will be Gillian wth Gymnastics and Girl Scouts and me fitting in PTA duties as I can. Phew!

Alistair is doing great being home. He has really taken the initiative to be independent. He tries to do things on his own before we help him. He pretty much does the stairs on his own, usually needing some help on the last one or two. He is still having some issues sleeping soundly all night. We are still getting up with him 2-4 times a night. He seems less anxious about sleeping at home and being in his quiet and dark room. It is more about being able to pull up covers when he kicks them off, getting over on his side (especially on the side with his cast he wears at night) or occasionally being disoriented after having a vivid dream. He is eating well, especially since he is no longer having to eat hospital food. He isn't eating a lot. I think he gets frustrated with not being able to stab or scoop his food well and finds it easier to stop eating than to keep going. He says that's not the case, but I am not so sure. That being said, he doesn't ask for snacks or complains about being hungry between meals. Perhaps his appetitie is smaller now, which isn't a bad thing! I am sure as he gets more active he will be more hungry. 

Since Gillian is getting up and getting ready to go to school in the morning, we all do. Alistair is keeping the same schedule as her as far as having breakfast and being dressed and ready to go to the bus since he will be doing this soon. He has been walking down to the bus and back every morning and again in the afternoon when we have been here. His pace is beginning to increase a bit, which is nice. Walking with Alistair makes me think of walking down the aisle as a bridesmaid and trying in vain to step in time to the S-L-O-W beat! I try to think about Water Music when we walk to help me walk slower and not rush him! His Fitbit has been great for him, I think he really likes being able to see how far he has walked every day and how many steps he is taking. His biggest day so far was Monday with ~8600 steps and 2.87 miles! He fell asleep early that night!

School will begin for him on Monday. When we were there Tuesday, I briefly met with Mr. Wellington and the school psychologist about getting Alistair back and what we need to do as far as acoomodations/policies/procedures. We have a meeting with the whole team Monday morning to start the ball rolling to set-up an IEP. He will return to school on a 504 to bridge the gap until the IEP is in place and that will provide him with the services he needs in the meantime. I think once he is in school, more stuff will start to fall into place for Alistair. 

People keep asking me and Seth how we are doing. I think we are doing well, considering everything going on. We are tired, sleep is not exactly sound. We are busy, which is normal for us, but it is harder having to consider Alistair's needs and plan for medicine timing and just getting around in general. We both felt down or blah on Monday and in talking about it later came to the conclusion that being home is great but it is hard and sad. Being at the hospital was extremely positive because he arrived in the state he did and just improved and got better every day. They didn't know him before, there was no history to which to compare. But at home, as happy as we are about the continued improvements, it is hard to see him struggle with things we know he could do at the end of June before we left for Minnesota. And of course there are constant reminders all over the house in the form of photos showing Alistair doing things just fine or providing a memory of some activity we did in the past that might be difficult to do right now. 

After my last post, many people made comments regarding the end of the blog! Not so! I intend to continue to do blog posts, they just may not be as frequent. The title of this particular post is extremely apt! And because it was so busy, there were no photos snapped!