Happy New Year! It’s been a while since the last update, so hopefully I remember most of what I wanted to post.
Today, January 3, marks the one year anniversary of Thom's massive hemorrhagic stroke. He was a bit depressed today when I mentioned it today to him. I believe he realized how much time has passed but I did my best to cheer him up by giving so many examples of how far he's come. For him, it's must feel like forever, but for the rest of us, the year went by in a blink of an eye. Thom went from having palliative care called for him because he wasn’t making any real progress and potentially discussing his last wishes to riding with me for 1,100 miles to attend therapy up in Michigan and him constantly shutting off my music. He went from being in a total fog to being as OCD as ever and ordering me around to clean the house and yard to exactly the way he wants it. He went from not eating or drinking at all to devouring waffles, hot dogs, pasta, chips, and iced tea, and yet still hard headed enough to not want veggies. I know he's frustrated he can't talk yet, but his cognition is impressive to say the least. He cannot move his right arm and leg all that much, but he's getting better, even each day, with transfers and moving around in his wheelchair.
During the last week up in Michigan, Thom was quite over the weather to say the least between the snow and the cold. It snowed a few times, including the Monday we went to see the Detroit Red Wings game so we had to deal with that traffic and driving in the snow, but it was worth it to see some good friends and former students (thanks Reed and Rob!). Thankfully he was not as much of a backseat driver as he normally can be. After the week and therapy ended, we drove on back to Florida with a few pit stops along the way to see friends.
Since we’ve been home, we’ve celebrated both Christmas and the New Year. Before the program in Michigan, I genuinely worried how Christmas would go. Whether or not he would be too overwhelmed or too frustrated when it came to speaking and then just shutting down. But during dinner and while opening gifts, Thom was absolutely incredible. While he wasn't able to say many clear words, he was trying so hard to speak, mumble, and laugh more than he had the entire year, combined. He was his old self again and was so genuinely happy. It really was spectacular. He has also been getting his weekly massage that has been a Godsend while I wait to get him back into therapy.
As far as therapies go, I am still waiting to hear back from TGH to get him back in there while I seek out other therapy. I would like to find a facility that has more equipment than TGH. It’s no secret that they would like to have more equipment there. I was introduced to many different pieces up in Ann Arbor and I’m hoping to find something similar here. They had a robot that would help move Thom’s right arm around and this was the first time I heard that he was engaging his shoulder, at all. They also had an exoskeleton which was pretty awesome to see in person. I’d like to find a place that also has experience with Saebo (https://www.saebo.com/), something I was not aware of until our visit up north. I’m hoping to explore augmented/virtual reality as well, something else I heard about from a former student of Thom’s (thanks Sebby!). There are so many different options, I just have to find the time to look into each and even see if it’s possible here in Tampa Bay. I am also hoping to get him into a gait training program with Dr Nunez, one of Thom’s doctors in inpatient rehab. We will not see him until the end of the month unless there is a cancellation. Dr Nunez worked alongside Dr Hayes and Dr Batas and thankfully remembers Thom very well. I’m hoping a change of environment will help reenergize Thom.
As far as speech therapy goes, I have heard back from The Aphasia Center over in St. Pete and they potentially have an opening in Feb/March, but I will get more details in the coming weeks. They typically only do four patients at a time but since we are local, they may be able to squeeze us in. I will provide updates later as I get info from Dr. Lori Bartels.
Thank you everyone for your love and support over the last year. It’s been awesome with how many people have helped out, from taking Zuri for walks, hanging out with Thom while I could run some errands or work, visiting him here at home or while he was at TGH, the donations toward the home renovation and the program in Michigan, and of course, all the kind words of encouragement. All these acts of kindness have been most welcomed and we are very grateful for each and every one.