I know it’s been too long since the last update. We’ve been busy with the day to day stuff and I just haven't found time to make a worthy update. That being said, since November, we have flown out to California five times for a total eight weeks of intensive (thirty hours a week) therapy with the Neuro-IFRAH folks. We also started back up at The Aphasia Center in St Pete last month after doing several video chat sessions in between November and this month. We are going back to St Pete a couple times a week as Thom has been making some great progress.
California has been incredibly rewarding. Back in October, it was a massive success for Thom just to stand. Fast-forward to today, if that’s all he does, we are both a bit let down as he has set the bar THAT high. During the eight intensive weeks, he’s gone from not engaging his right leg, not standing well, not walking, and depressed given the incredibly slow progress, if at all, to actively asking to walk daily! When I say walking daily, I do not just a few feet, he’s wanting to walk a few hundred feet a day!!! Though it may start to slow down some given it’s so hot outside again. Thom has been able to walk in to restaurants, doctor/dentist appointments, around the mall a little bit, as well as walking into speech therapy!
It’s crazy to think back to last summer when TGH gave up on Thom because he was not making progress. It’s mind-boggling that insurance doesn’t pay for any of this because they don’t see the value in this sort of therapy. Yet, in not even six months (November to March), Thom has gone from quite literally doing nothing to being himself again emotionally as he’s much more out of the fog, can see progress, actually attempting to speak again, and walking!
While in California, they were able to push him to his limits and then some. He was walking upwards of a thousand or more feet a day with ease. He is able to really move his right leg with intent. He was able to bring his knee to his chest while laying down. He was able to stand with the vast majority of his weight on his right/bad leg. During therapy, he was able to move his arm in more directions and his range far exceeded what he was able to accomplish what he was doing even at TGH. His range on his right arm at times matched what he was able to do prior to the stroke. His left side is still trying to compensate a bit, but not nearly as much as before. We are going head back to California again this July, just confirming the final details before I start booking everything again. This will be our last time for a long period as it’s incredibly expensive and our funds are drying up. So incredibly frustrating that getting back on one’s feet costs so much money.
We have been keeping up with walking here in the meantime and Thom has answered the door a few times when he feels up for the challenge and we can time it just right. Thom has been awesome to say the least. He’s been trying to walk on his own at home, trying to walk up stairs, and around the backyard with minimal help. While it’s incredible tough and labored, I cannot help but to applaud his enthusiasm and effort. We have been trying to meet up with a therapist here in Florida who is one of the top instructors for the Neuro-IFRAH methodology, but having 4-6hrs a month pales in comparison to the 30 hrs in one week.
Regarding speech therapy, Thom has been slowing gaining more words and answering with fewer cues than ever before. We are trying to get him to ask for more (simply ‘I am hot/cold’ or ‘I want tea’) instead of signalling what he wants. But this road is even more difficult than PT and OT.
As far as other updates, since November, we have had mostly out of town visitors as well as meeting up with friends while in California. I have taken him out and about in town, including to Shuffle: The Heights, here in Tampa. It was pretty rad seeing Thom stand up trying to play some shuffleboard with family. Please do not hesitate to reach out if you’d like to see Thom, even if for five mins. Most, if not all, of our few visitors this year have been from far outside of Tampa. Just a quick hello makes him feel incredibly loved. I do need to say thank you to those who came from far away: some came several hours of driving either across the state or even from out of state, and even those awesome people that flew in from Sweden and Austria. I cannot stress enough how much a simple hello can go...