Sam finished up rehab part 3 in the middle of August. Throughout his time there, he continued to make progress. His big goal before leaving was being able to go back to school without his cane. After doing a lot of his PT outside, he was ready to go and can be seen during passing periods cruising around campus sans cane. I believe his aide had to talk to him about moving a little too quickly, as she's carrying his 10-15 lb. backpack (not hyperbole) and trying to stay with him. He has a new aide this year. We loved Mr. Ray last year. He was absolutely perfect for what Sam needed at that time. This year we have Ms. Vicki, and she is absolutely perfect for what he needs now. She gives Jim updates, had some great input at Sam's ARD (yearly Special Ed meeting), and has been a great addition to #TeamSam! (More coming about why later.)
Sam has continued to improve as expected - at the slower rate expected as well. We will take any and all forward movement happily. He has had a couple of changes to his treatment plan, most of which have been productive. First, at the recommendation of rehab staff, he started taking Ritalin. Its purpose is to keep him focused, especially when he's partially through the day and tired from everything he's already done. We do have to watch out for weight loss because he's always been on the thin side, and we don't lose the weight he gained back after the coma. (At one point, he was down to 125 lbs. Even for him that was bad.) I have been adding extra calories to his food ever since the feeding tube came out, and all the extra walking he does at school does not help. The weight seems to be holding ok, and the focusing is definitely better. In a perfect world, we could figure out to transfer our extra weight to him. So far, we have not found that magical solution, but that won't stop us from trying!
Sam also had his second round of Botox with the PMR doc. The first round was lackluster at best, so they upped the dosage to the maximum this time. The good news on that is that his arm has been really loose. In fact, one of the mornings I went to get him up, I got to see some thumb wiggling. I couldn't help but think about this scene (at :40) from The Princess Bride:
That is the good news. The bad news is that unless he makes some significant progress, this is the end of the Botox for him, and the only other real option would be surgery. We are not even remotely considering that at this point since that would really mess with the school plan. We're just hoping to see more improvement as it takes effect.
One other change that is considerable also came out of the PMR visit. They want to try something new to try to increase flexibility/position in his left foot. It is called serial casting. What will happen is that over a period of 6 weeks or so, Sam will get different casts that will force his foot to stay in different positions in an effort to try to get more range of motion, and hopefully muscle memory to get that bad boy moving. We are not looking forward to it in the least. We're looking at 6 weeks of misery, "fun" with walking, itchiness, weird leg positions, and other general insanity. On the upside, we don't have to worry about trying to ram the choir shoes on since they don't fit with the brace. We'll also be able to give the brace a little break. That whole process starts in a week, so we'll keep you posted on how we're all coping.
Other than that, the big fun news is that he has already sung in two concerts already. One was with CCGD (Children's Chorus of Greater Dallas) and the other was with A Capella choir at school. In CCGD the young man Sam is next to has been wonderful with helping him be in the right place and carrying stuff if needed. We're not sure if he was 'enlisted' by the director or not, but it really doesn't matter. There are definitely good people in this world, and they keep showing up throughout this battle. Another one I mentioned earlier is Ms. Vicki. After working with him all day, she was there at the concert, helping him safely get up and down the steps twice. Additionally, there were other guys in the choir walking behind him making sure he was ok. Although it is possible they were just behind him waiting to get onstage, they were watching out for him nonetheless. It's good to have him back onstage in a tux again!
To close, here is a picture from the school concert with both kids making music again. Have a great week!
Photo Cred: Tiffany Wilson (Thanks for tagging us!)
No comments:
Post a Comment