Weekend Happenings

Weekends in rehab are somewhat quiet. You have half a day of therapy on Saturdays and a total break from therapies on Sunday. Saturday brought some small but exciting moments. Alistair had physical therapy in the morning and she brought in the tilt table to work on some leg strength. She had him at about 50 degrees and loosed the straps. Then she had him bend one leg at a time then straighten it. Once he demonstrated quite well that he could do that, she had him do his legs together. He did over 20 squats on there! He had lots more strength in his left leg than his right, but she said as muscle groups begin to get used on one side, they help fire synapses over to the other side to help it remember too. Apparently she was so impressed with his performance that she went and found the attending physician to tell her about it! In occupational therapy, they worked on hand and finger movements. He was able to pick up a squishy ball and hold it without dropping it. Then he was also able to throw it. This is something that has proven hard for him. In addition to his hands ands fingers beginning to work, his feet and toes are also starting to move more on their own. When he wiggles his toes, it is much more pronounced and obvious than a few days ago when you really had to watch for movement!

Yesterday Alistair had 2 very special visitors. His principal, Mr. Wellington, came to visit with his daughter and brought some homemade scones (which were delicious!) his daughters made. Then Alistair's 2nd Grade teacher Mrs. Scheel came. We chatted for a bit and then we left her with him so she could read him some books. He fell asleep during the reading, but I think it was because it was soothing to him and he likes to fight sleep sometimes. I know he really enjoyed seeing her and she promises to come back and next time she will come with her friend who has a therapy dog! Auntie Ann and Uncle Bob came in the afternoon and hung around to order Chinese food and have dinner with us! Nice company!

Alistair was swabbed this morning first thing and 2 hours before lunch we found out we were no longer in isolation. We were getting ready to get Alistair out of his wheelchair and into his bed. But when we got the news, he decided it was time for that wheelchair ride he asked for the other day! Carolyn and Jenn had shown up to visit, so we went up to the rooftop garden where Grandma and Grandpa joined us too. Then we headed for the parking garage as Alistair wanted to see the new car! We opened all the doors so he could peer in from his chair. Seth started the engine and we showed him all the running lights and headlights. He was pretty excited! We headed back to the room after that and Grandma and Grandpa had lunch with Alistair while we went to lunch with Carolyn and Jenn. Shortly after we got back, Grete showed up with a smoothie for Alistair. He quite enjoyed it and it was a big enough to freeze some and have it tomorrow! Melissa was our last guest for the day and she brought Alistair some fun airplane items, one or two of which we might be able to use in therapies! This evening we took our dinner out to the patio and ate outside, first time in almost a week!

This morning, while speaking with the attending physician, she told us a quote that resonated with her she heard at a conference, "Each patient is telling a story, their own story, and sometimes you have to wait longer for them to finish." Alistair is actively telling his story right now and it is constantly changing and nobody knows for sure where his story is going. She said it is all very interesting and she finds his changes very encouraging and positive. Seeing what Alistair is able to accomplish on a daily basis is great and very encouraging. His head nods are much more pronounced, his head movement is much more fluid and the extremities are beginning to work better. He is still fighting some acquired dystonia, mostly in his arms and jaw, that I wish would go away. Over time it might or should. But right now it angers me, especially when his arm rams him in the face and he can't get it down by himself. It is all involuntary movement. Depending on his level of fatigue, he can overcome it easier. They are talking about doing some isolated botox on the muscles affected most to be able to give him more control and the ability to work on the underlying strength to help control it better as it subsides. 

Tomorrow is a significant day. It marks our first full week in rehab. It also marks one month since Alistair's surgery. I have so many mixed feelings about this whole situation. Alistair's heart is strong and working great. It was a successful surgery, from that standpoint. As I sit and speak with doctor's about Alistair and the things he is doing or the care he needs or the future possibilities for accommodations, the phrase, "this was only supposed to be heart surgery" keeps running through my mind. It wasn't supposed to wipe out my 9 year old son's ability to be a kid, it wasn't supposed to make him relearn how to do everything he learned as a toddler, it wasn't supposed to spread our family apart in 3 different directions. I was going to be worried about a kid with sternum precautions wandering around our house and tripping. I was supposed to be nagging him to go out and walk with me to get some exercise. But mostly we were supposed to have a kid who was better because of his surgery, not broken. He will get there, in time, but he wasn't supposed to "get there."