Brady had two appointments this week, so it feels like an appropriate time to update all of our supportive people of the goings on.
The first appointment was with Brady’s physiatrist. We first met with a nurse, then two residents, and then the doctor. It was a long appointment where they went through all kinds of sensitivity tests on Brady, similar to the beginning of his stay at rehab. They broke a tongue depressor in half and poke him with the sharper end to see how sensation changed inch by inch down his torso. There is a very specific line where feeling goes from 100% to 20% to 0%, yet that spot is a liiiiittle bit different from side to side. There were lots of reflex tests and strength tests. The basic “don’t let me push you, don’t let me push you” stuff. There was a five point rating scale of strength, and his right leg tested at five for absolutely everything. The resident just laughed and said “Is five plus a thing?” Surprisingly, his right leg, the one with far less control, tested at four for a number of the exercises!! What a pleasant surprise! The only thing Brady couldn’t really do at all on the right side was move his foot side to side. The leg, sure, but not the foot. His right ankle is definitely his weakest point, and not all of his right leg muscles fire anymore. Not to say they never will, but that is the current state of his mobility.
His appointment took an unexpected turn when his doctor asked him to walk unaided. Now, this can be done, but it isn’t done because it is HARD and takes a mountain of energy and concentration. And realistically, Brady shouldn’t walk unaided because his muscles aren’t up for it, and he would have to walk “wrong.” It does him no favors. But the doctor just asked for it, so I stood with him with a hand out for him to grab it he lost his balance, and he walked back and forth across the exam room. I admit, though I really liked the doctor we saw, I had some brief eye roll moments when he critiqued Brady’s walking, saying it was unstable. Dude, if it was stable, he’d be walking… And he isn’t. Because it isn’t. But the main point was that the doctor noted how Brady walks on his toes, and that if his knee ever were to give out, he would hit the floor. He started talking about getting Brady’s AFO (ankle foot orthosis/brace) changed. Now, Brady’s AFO was custom made and fit and tweaked numerous times to get it exactly right for what he needed. The doctor wanted to bring it back to square one, fusing it back into one solid piece where he couldn’t bend his ankle anymore. That was something that was necessary several months ago, but he has progressed since then. It was TOO fixed before, to the point where it got in his way, and if Brady needed to be up and around, he would take it off. The doctor wanted to bring it back to that point, which was discouraging to both Brady and I. We expressed this, and he was willing to meet us in the middle, and just make a modification to it so he would have less movement, but not take it all away. We conceded, and he said he would make a note to contact Saskabilities on the subject.
Also in that appointment, it was noted that the tone in Brady’s right leg was vastly worse than we realized. Muscle tone is a good thing, but it can go too far, which is what has happened to Brady. His hamstring is SO tight, it is next to impossible to get his leg to extend fully. Which is likely part of why he walks the way he does. So changing the brace would force his foot/ankle into a more appropriate position, but we also need to tweak his meds a little bit. He had a medication that helped a lot with spasticity in his legs, but as time has gone on, his spasticity has improved greatly, and he’s gone way down in that medication. But apparently that medication is also important for tone, and he needs more. So a small tweak should do the trick. Thats not especially worrisome.
All things considered in that appointment, they told us that we are people they consider to be “making it.” They were all very happy with how much Brady can do, the strength he has, and the team we make. We were encouraged in a lot of ways. It was a successful appointment that I was happy to be there for.
The very next day, Brady and I went back to the hospital for an outpatient rehab appointment. If you remember from weeks back, Brady’s therapist changed, and we learned that we had to take some monumental steps back. It was terribly discouraging, and I felt very out of the loop. Yesterday I had the pleasure of meeting his new therapist, and we really got along well! She asked what we wanted to tackle in PT, and we started talking a bit about Brady’s appointment the day before. We got into the discussion about his AFO being changed, and everyone agreed that it was a little hasty. Brady walked unaided to show his therapist what the doctor had seen, but then he walked with a crutch, and he was significantly more stable. Again, Brady doesn’t walk unaided, and his therapist knows this. She was, however, able to see what the doctor had noted about how his foot/ankle aren’t as straight as they should be. She agreed with the bump in his spasticity medication, but was hesitant with changing his AFO. It felt so good to have her on our side. She brought over a different brace to try that she thought might solve our problem, and it felt SO much smoother for Brady. Its a very light, streamlined brace that doesn’t have a full hinge on the ankle, but it had some flex. Its a way thinner brace, and I think Brady would be WAY more inclined to wear it than the big one he has now. The one he has now is super heavy duty, which was very necessary when he got it, but its a bit overkill at the moment. He has to wear bigger shoes. He can’t get pants over it well. Its just huge. But the one he tried in rehab yesterday was incredible. SO much potential there. His therapist was really happy to have found a middle ground for us, and she said she would personally talk to the doctor and make sure he was on board. Beyond that, we should be able to go to Saskabilities and pick this new brace up! Its not a custom fitted brace, but it will be bent up a bit and fitted to his leg. Its simpler, in the best of ways. I’m excited!
Physio was successful all around. His exercises went well. He is very strong, and it shows. He can move his ankle more than he could even a couple of weeks ago. Things are working. And his therapist is SO knowledgable. I was so grateful to be able to meet her and interact with her. She never made me feel in the way or like I shouldn’t be there. It was a good appointment and I hope very much to make it to the next one.
Its been the busiest week we’ve had in a long time, and as it wraps up, chemo begins today! We can do ALL THINGS through Christ who strengthens us!