March 1, 2017- I was due for a day like this!

Yesterday was one of the best days of therapy I've had in awhile...and that's saying something considering the fact that the only real "bad" therapy I've had were those 20 minutes two weeks ago.

Let me back up a little bit first. Tuesday was a good day as well. I've been working on "sit to stands" in therapy and have been able to do it from 24 inches with only minor knee support. My goal is to be able to do this from 21 inches, the height of my chair, so that I can practice at home or anywhere outside of therapy. I was able to do this with Kim in the pool on Tuesday, so I know it's an attainable goal. I was relieved that my time in the pool with these sit to stands and walking went well, because I've been having a really strange sensation in my feet. On Monday afternoon, I felt like my left foot fell asleep. I've had this feeling for the last month any time my legs were crossed, but it was totally normal. Like whenever I was in a position and didn't move for a little while. It feels just like anything would when it falls asleep and it'd go away after I move and reposition. I was happy about this change because that's exactly how my arms and hands felt before I was able to have full motor control. However, when my left foot fell asleep Monday, the feeling never went back to normal. It still felt kind of numb and tingly when I got in the pool (and my right foot did too, but to a much smaller degree). It was a weird feeling because although I don't have much control over moving my foot, I at least know where it is in space and can feel that it's on the ground or if something it touching it and this "asleep" feeling was more overwhelming than those other sensations. When we were walking, I couldn't really tell where my foot was and the numbness was really bothersome. 

My therapists were a little worried about this new feeling and asked a lot of questions. But other than the sensations I was describing, there weren't any other symptoms. No swelling, no redness, no changes. When I got to the gym, Dennis got me on the Thera-stride and while we were walking, with a therapist on each leg and one at my hips, Dr. Recio came in with his nurse. I already had about four therapists with me and when the two of them came in with my mom, I felt like I was taking over the whole gym! Dr. Recio asked me what was going on and, keep in mind that he is a little dramatic with a lot of personality, he told me "I am very concerned. This is not good at all. I'm very unhappy...you need an MRI right away! Today! This could mean the hardware in your spinal cord is slipping." My heart almost stopped! I don't know why, but I was thinking the "hardware" he was talking about was a phrase for everything that makes up the spinal cord and instead of "slipping," I heard "snipping." Instantly, my mind started picturing a spinal cord with all the axons "snipping" and tearing, dying away. For a brief second, I thought "oh my gosh, what if I'm not getting better? What if I'm actually getting worse?" Luckily, Mom stepped in and reminded him that I didn't have any hardware...I had ADEM. I guess, he was thinking I had actually metal and hardware in my spine, like many of his patients. And when those individuals complain of numbness, it's a very bad sign. Dr. Recio said "Oh, yes. ADEM. Okay, never mind. No worries. Just monitor." and walked away. Just like that. It was the biggest roller coaster of emotions all within a two minute time span, but thank goodness he didn't seem as concerned in the end. He told me to let Dr. Pardo know, so I sent him a message on "My Chart" just giving him an update. Not even two hours later, he called on our way back to our room. Dr. Pardo asked me to clarify if I thought that I was losing sensation that I had already gained, or if this was a change that was in addition to what I had. It's kind of hard to explain, but I feel like the numbness was just stronger than my perception of where my foot was in space. I was concerned this was a bad sign because I felt like I had more control before. It was more "normal." He assured me that this is actually a good sign. This is nerve recovery and regeneration. It's what is supposed to happen. Isn't it crazy that things kind of have to get worse before they get better? He also warned me that since these nerves are waking up and starting to work, there's going to be some misfiring and my body may not know how to react. I may experience some pain and to keep him informed so he can prescribe me some pain medications if need be. Oh, how I hope it doesn't some to that! I've been so fortunate thus far to not experience the nerve pain I've heard other people complain about. 

The rest of my session with Dennis was successful. He tried walking over ground for the first time since that failed attempt a couple weeks ago. This time, he let me take the top harness off, requiring me to support my own upper body and use my core strength. Not only was I able to bring each leg forward on my own, with the therapist only support my knee, keeping it straight as I bring the other forward, but I was doing much less compensation from my hips. It's so much easier to use my hips and just throw my leg forward because those muscles are stronger than those in my lower leg. The movement usually comes more from my hips, instead of my knee coming up and forward. Dennis was really impressed and I was so happy considering how awful this exercise went the last time we tried. I honestly didn't last very long. We did a few times up and down the length of the gym...4 times to be exact. I took a break after each length and by the last one, my body was completely exhausted. There have only been a handful of times I've felt my body really be pushed to the point where I don't think I can continue. I'm not usually one to take breaks and I can always make myself do just "one more" of whatever exercise we're doing, but I really felt like I was going to collapse if I tried to keep going. 

We took it easy that night and since Kristen and her mom were still in Baltimore (from Knoxville) for her second week of therapy, the four of us got take out and stayed at the Hackerman Patz House, where we stay each night. The have a large family/living room with a long table and plenty of space for us to hang out and be comfortable. It was so relaxing to just sit around, telling stories, sharing laughs and experiences with people that have kind of been through the same thing. 

But on to Wednesday. The best day. Quyen changed my 8-10 therapy to 10-12 and you'd think that we'd have so much more time in the mornings, but every single time, Mom and I have barely made it there by 10! I love having a slower start and not feeling rushed. Since the GEO was a little weird last week, probably from not being calibrated, Quyen suggested that we work on standing and sit to stands in the gym instead. We used the electrical stim that works through patches on my stomach and my back and I feel like that gives me even more control. I mean, as soon as they turn it on, I automatically sit with better posture because it activates all the muscles in my back. Our first goal was to stand for ten minutes, but I barely made it to seven. It was really difficult because she was not letting me lock out at my knees. And because she wasn't letting me do that, I automatically tried to lock out at my hips. But when she didn't let me do either and wasn't giving me much support, I was having a harder time holding myself up. The next stand was longer and then the third stand was THIRTY minutes! And she had even taken away the hip harness, only giving me some support at the knees when I needed it. Also, the stim was turned off for the last fifteen minutes of that. I thought it was going to make a big difference, but neither of us could really tell. 

While I was standing, I asked to get measured for the exoskeleton--the Esko--again. The Esko is like a personal exoskeleton that you wear. It goes around your legs and hips and you get to walk over ground with it. It has been a goal of mine since I started last year to be able to use this robotic-like walking machine, but my hip width was a couple inches too wide. Even in January, I didn't quite make the cut. When Chris measured me this time, he didn't even really understand why I was so worried I might not fit..or why I didn't understand what he meant when he said "you're in." Not only have I lost inches on my hips, but I weighed myself after therapy, and I've lost 18lbs in the last six weeks! I get to start in the Esko in the next couple of weeks and we're going to do it for an hour instead of my regular therapy to see how exhausted it makes me. If I can handle it, we'll try to schedule it outside of my regular therapy, but I think it's smart to not be too ambitious at first because I've heard a lot of patients say how tiring it can be. I just couldn't believe I lost that much weight. I've been doing everything right- counting calories, eating at home and not going out, making everything homemade, etc and I haven't seen it really pay off over the past year. I know something was working because everyone else in the family was losing weight, but for some reason, I wasn't. And I was the one working out for multiple hours a day. So when Chris told me that I fit and could finally do the Esko, I automatically teared up. Finally. Finally, that hard work is paying off.

As if I wasn't having a good enough day at therapy, the pool helped to end on an even higher note. I was with Lizzy and we practiced more sit to stands in the water at my 21inch goal. The walking was really great and I felt my right leg stepping better than I think it'd ever done in the pool. My left leg is usually pretty good at coming forward, but I need a lot more assistance with the right side. I was amazed at how much better it went! Now if only this would happen again next time I'm in the pool because I know how impressed Kim would be!

I also finally had a wheelchair appointment. I got a new seat cover that actually fits my cushion instead of being two sizes too big, new casters (the front wheels) because the old ones were a little crooked, and a new foot plate that is stationary instead of the one I had that flipped up. They also took some of the extra hardware and brackets off, which added up to three pounds taken off the chair. It doesn't sound like a lot of weight, but making the chair lighter at all should help me as I learn to load my chair into the car when driving. Speaking of driving, I have my courses scheduled!! They got me in right away and I have three appointments scheduled so far. Hopefully that's all it'll take for me to learn the hand controls and then I have to take a behind the wheel test with the DMV, but I start on the 13th, only a week and a half away!

I leave for Florida tomorrow--a trip with Mom and Sally that I got for Christmas. All I wanted was to go somewhere warm, and what better than a girls' trip?! I thought this was such a perfect way to end therapy and am excited to leave on such a good note...now I can really enjoy my vacation! And I get to come back to start driving, using the Esko, and continue to kick butt in therapy! Things are really looking up and I have such a good feeling about the upcoming weeks!