Quick Check In

The day went well! We hope to see some results in the next few days.

We arrived at Children's this morning around 9:45. We got all checked in and then they took us back to the intake area. We got Alistair all changed and cleaned and ready to go. He occasionally got a little concerned or stern looking or maybe a tad weepy, but Seth kept the humor moving and distracted Alistair with jokes. Dr. Apkon came in and chatted with us and Alisair as well as did a thorough exam. She marked all his areas she was planning to hit with a black "X." Today she asked about his thumbs and strongly encouraged that we do his thumbs as well. She hasn't steered us wrong yet, so we went along with it. 

Once she left, the remainder of the team came in to do last minute checks to make sure they had the right patient, the right procedure, etc. Then it was time for Alistair to go. Seth was going back with him until he was asleep. I told him to come give me a hug and get his friends (David and Tracker were his support team today). He came over to me, hugged me and buried his face in my shoulder. I think we was trying really hard not to cry, but was definitely weepy (I was doing the same thing!). Then the anesthesiologist asked Alistair if he knew any good jokes. I whispered in his ear to tell her the Cannibal eating Clowns joke and he giggled and turned around to tell her the joke. They walked down the hallway telling jokes and even went to sleep attempting to tell a joke..."what do you call a bug with 4...4...4...zzzzzzzz"

42 minutes later Dr. Apkon came out to find us in the waiting area. She was pleased about how everything went and felt confident she got all the areas as thoroughly as she wanted. Not long after we were paged that he was in recovery. We went back and he was wide awake and entertaining the nurse who was tending to him. They loved him. They kept saying things like "if only we could bottle your attitude and spread it around to the other patients!" "You guys are havng WAY too much fun in here!" They were sad to see him go, but knew he was anxious to get to Lake Chelan!

So they let us go finally, we got on the road and here we are. We are looking forward to a few days of R&R. We are also looking forward to seeing what kind of results we get from today! 

No More Wrinkles!

Tomorrow is a big day for us. Alistair has an appointment at Children's to have Botox injections...finally! We have been struggling with this loss of use thing and contortions in his right arm and hand for too long now. We went in to see Dr. Apkon at the beginning of June. It was decided at that appointment that he needed to come off his Artane completely and get back on his Sinemet...get him back to baseline where it was all good. She also decided it was time to take some additional measures and get us set-up for the injections. 

Since he has been off Artane and up on Sinemet we have noticed subtle differences. He seems more relaxed in the morning on the right side. But as the day goes on and he gets tired of fighting the tone in that arm, it comes up more and more until it is tight up against his chest. His left arm is much more loose as is his hand. He still doesn't keep his wrist in a neutral position...though he is getting his palm down to support himself instead of doing it on the back of his hand! 

The plan for tomorrow is to inject his bicep on his right arm as well as the some muscles in his forearms to help get his wrists back into neutral positions. They are doing this under anesthesia. Dr. Apkon feels the best way to get the best results is to do this with him out and relaxed so she can accurately pinpoint the targets using her e-stim machine. Last time he had Botox, when he was inpatient, they just numbed the areas. But he was awake and tense and she feels she didn't get as accurate as she had wanted. 

I am focusing on the outcome of all this, why we are doing it. I am not excited at the part where we walk him back, get him prepped and leave him after he is sedated. Last time we did that, it didn't end well. But I know I can't think that way. The best part is as soon as he is done, we are getting in the car and driving to Lake Chelan for the remainder of the week. 

Alistair finished 4th grade last week...crazy to think the school year is over already! It ended up being a good year despite the additional activities and needs. As he has done since all this happened, Alistair maintained a great attitude and outlook on everything and did great! He was a bit sad about ending 4th grade and is apprehensive about starting 5th...but we will just take things one day at a time for now! 

I will try to get an update tomorrow about how things go. If you could send positive thoughts to Children's around 10am, it would be most appreciated!