Busy Day!

After not getting much sleep, I figured not a lot would be accomplished, by Alistair or me today! Seth, my Dad and Gillian came to relieve me this morning. I came home, wrote the blog post, called Alaska Airlines to cancel our flights on Tuesday and then took a shower. Seth had strongly encouraged me to take an hour or so nap and I fully intended to do that, but then OT/PT were coming, Neurology was coming for an exam, Seth and I were taking Gillian out for lunch and ice cream. So a nap escaped me, but I did pretty well running on fumes!

                               

Alistair also had a pretty great day despite his restless night. He had a couple of dangles off the side of his bed with minimal support. Troy and Seth picked him up and set him on a portable commode to try to use the toilet. He didn't go, but sat up quite well on his own. He had a great workout with OT this morning working on looking at magazines, turning pages, stretching, etc. Afterward Papa helped him with a Popsicle. When we got back from lunch, PT came and put him in a standing device. We didn't get all the way to standing straight up and down as they want him to have more supportive shoes...I only brought easy shoes to put on as I figured he wouldn't want to bend over and tie then after his surgery. So tomorrow morning I will buy him some tennis shoes and hopefully they can get him to fully standing with support. While he was in his slight standing position, he worked with some balls and tried throwing them to me or Gillian. He took a little rest after his session with them and then we got him ready for going outside.

                                       

Ranae, Gabe and Sully came to visit and met us in the courtyard by the fountain that Alistair was adamant about visiting after he had his surgery. So after 40 minutes of getting him transferred into a chair and moving all his stuff over, we headed out to greet the Sandholms. They brought him some books to read as well as a box of Megablocks (Duplo Blocks). Ranae thought he would like to build, but legos would be too small right now. Brilliant idea! We opened them and he, with assistance, put about 5-6 8-dot bricks on a platform. Then was done and one by one took the bricks off and handed them to me. Then Sully held up the box and Alistair picked up each block and put them away in the box. The whole time he was experiencing tremors, but he was determined!

Getting him outside was great for him. We spent almost 2 hours in the courtyard and I think he really enjoyed the fresh air, the sounds, the breeze and watching other people. It was hard for some of us to see Alistair next to Sully, comparing him to how he should be. I also was bothered by the way people looked at Alistair as we rolled by. But overall, the experience was positive and hopefully will be and added bonus to give him a good night's sleep tonight.

When we got back to the to the room, I asked him if he wanted a Popsicle. He told me he would like a Popsicle (mouthing the 3 syllable word) and then I asked him if Gillian could have one too and he said yes. So they had Popsicles together. When he was done, he had a breathing treatment that helps loosen up the junk in his lungs. Seth asked him if he would like him to stay with him tonight and he said yes. Neurology has ordered drug for Alistair to start taking tonight that will hopefully calm his tremors to allow him to be able to sleep better. It is not a sedative or muscle relaxer, it just calms him body. They also prescribed Melatonin per the RN's discretion. Hopefully those coupled with the busy day, lack of sleep last night and the fresh air will provide Alistair with some restorative sleep tonight. So Gillian, Dad and I headed back to the house and had dinner.

I am becoming more confident that Alistair will overcome this. I see him in there and he is working so hard to get out. I still have those other feelings that keep trying to take over. I allow myself a little bit of feeling these feelings, but then I take them over with positive thinking and outlook. I believe in Alistair and I know if nothing else that we have taught him how to get back up after being knocked down and quitting isn't an option. That being said, all of this really, really sucks and honestly, it's not fair! I wouldn't wish this on anyone and I feel like we have already been handed so much diversity with Alistair in his lifetime. I do believe you are never given more than you can handle and I suppose we were chosen to have Alistair because we can handle this. But I think after all this is said and done, we are good on handling stuff and the rest of his life should be a cake walk.