I feel kind of lucky that it has been quiet, knowing how hard this time of year can be for some, including dear friends of mine. You know who you are, and I'm only a text or call away. xo
It has actually been a smooth transition...my most common answer to the question "How's everyone doing? How's Harrison doing?" seems to be "Great! Other than the seizures of course, but really great." I look at my son's epilepsy as more of a nuisance than anything else. Nice. Something is just a little bit not right with me- ha! Seriously, we just don't have room in our lives for seizures! I tell him that all the time, but his brain can be a real ass sometimes.
So clearly, Harry's seizures are still out of control. He still takes CBD in addition to his Rx meds, and I am ready to change things up. Waiting for a new med, which he actually tried once before but within 2 days he was an emotional wreck...maybe it was a fluke? Or maybe he had the opposite reaction that he was supposed to have, as has happened with other medications that have made the rounds in his "fragile" system. It is supposed to be helpful for his types of seizures. Yes, types, since they change periodically. Always have. So, we shall see. If this one is a fail, we will start the complicated paperwork for a new CBD drug, made from cannabis, I am assured (as opposed to the synthetic crap Big Pharma was supposedly working on), called Epidialex.
As I said, other than the seizures, he's doing great! Harrison is so incredibly happy at his new school, and he continues to make beautiful progress, especially with communication. He has two recordable buttons, for YES and NO, which he is totally mastering. Not only does he use them to make choices, he also uses them to answer academic questions and, at times, to REALLY emphasize something (YES YES YES or NO NO NO- bang bang bang on the button)! And he does the same thing with MORE when he's eating something he really likes... especially if his feeding servant leaves the room momentarily...
Harry has also worked really hard on the Lokomat, a robotic gait trainer. We go to Spaulding Rehab in Charlestown once or twice a week and the progress from the first session to the most recent is incredible! First he gets to hang suspended in mid air, which he especially enjoyed after seeing Mary Poppins Returns! Then he is strapped in and the workout begins. It is supposed to train him to use a more proper gait, and promote muscle memory. It seems to be helping- we have noticed his steps are much more forward (as opposed to swinging around), and he initiates steps more too. I posted a link to the video below the pics.
As usual, Harrison made out like a bandit over the holidays. HIs favorite is a really cool aquarium toy that can plug into his "Jellybean" button to turn it on and watch it endlessly- even the fake fish are mesmerizing! He doesn't always feel like using his hands to press his buttons either- here he is using his leg, sometimes he uses his arm, sometimes even his head if the button is positioned in the right place! Hey, whatever works! I use my tush to open doors all the time, it's no different!
Since Harry left our public school, it's been a priority to keep him in touch with his friends, like when he visited his old classroom in the Fall. Yesterday was incredibly special- his friend, definitely a BFF, came over to play, and he was thrilled! And I really enjoyed meeting his parents- they are amazing for so many reasons, and I think we will all see a lot more of each other. By the way, their kid- so freakin adorable and sweet!!! I was looking forward to seeing him as much as Harry was!
And on that note...stay tuned.
