Skiing was a success again! I'm really starting to get the hang of how to turn...I didn't realize how far I have to lean and really reach the out rigors (the hand held blades attached to each arm). Now, the stopping is a different story! I'm good at reacting when the guy behind me yells "left" or "right," but when he yells "stop," I go straight to the side of the hill (instead of gaining momentum by continuing down the hill) and try to make the blades of the rigors go up so I can stick them into the snow and stabilize myself...but it's way harder than it sounds or looks! I think my reaction time is just too slow or something, haha. And one time, I started to come to a stop, but took too long to get the rigors into the ground and just fell sideways. Surprisingly, I've only fallen over once each time I've done it and I guess that's impressive because the instructors were happy with my performance. Since I'm in the bi-ski, it's a little more bulky and I have to be dependent on the instructors to load me onto the ski lift. It's spring loaded so the seat lifts up and the ski lift bench slides under me, letting me stay in the ski as we ride up the slopes. You have to learn how to get yourself onto the lift when in a mono-ski and you also have to know how to stop...they think I might be able to progress to this, but I'm not so confident that it's going to happen anytime soon. I think the next step will be to lessen the amount I'm tethered to the person behind me. Right now, they ride behind with two straps attached, one in each hand, allowing them as much control as the may need based on if I'm helping with the turns, etc. We talked about trying to go down to just one strap, requiring me to do a lot more work, so we'll see if I'm able to get to that point in the upcoming weeks.
The PT part of the "PT and ski" also went well. I brought my walker and showed the girls how my therapists help me stand with it. Dennis usually sits in a chair in front of me, with a pillow between our knees and a strap around my waist to help me get up. Once I'm up, I pretty much do all the work. The therapist is able to let off both my hips and my knees, but it's really hard! It takes a lot of core strength to keep my butt tucked and my knees like to give out, so I'm constantly trying to squeeze my thighs and keep those legs straight so I can stand tall. I think this is just going to be something that gets better with time...I'm only going to get stronger and my body will hopefully start remembering what it's supposed to do.
I didn't mention it last week, but I finally took my DMV knowledge exam! It was really hard to find a whole day to devote to spending it at the DMV, so it took me awhile to get it done. Like I said, it's the same exam you take when you're 15 in the state of Virginia and I'm still confused as to why I had to redo it before starting my driving courses, but I'm glad it's over. The next step is to schedule my driving courses so I can learn how to use the hand controls. There are two problems with this though...the first is that I'm not sure when I'm going to find time to drive to northern Virginia for the courses while I'm in therapy in Baltimore two days a week (or what availability the driving school has) and secondly, in the state of Virginia, you have to show the instructor that you can disassemble your chair and load it in the car (and unload it) on your own. I'm hoping it's nice enough this weekend to start practicing that...the chair is just so bulky that it's awkward to drag across my body to put it in the car myself, but I'm hopeful that it will just take some problem solving and practice.
Saturday, February 18, 2017
Wednesday, February 15, 2017
February 15, 2017
I've forgotten to post a few updates...
First of all, Quyen did an assessment last Wednesday. I get one every four weeks (once a month) to track my progress, change/update my goals, and to determine if we should extend therapy based on any improvement seen. She did probably the most thorough assessment I've ever had. She did the normal tests and then moved my legs or repositioned my body to check movement in different positions in order to tell where certain movement was coming from and if I had any activation of smaller muscles we've never checked before. A lot of my reaching measurements improved from four weeks ago, meaning my core and balance are still getting stronger. I had new ankle movement that was even stronger in a different position. There are two muscles that move your ankle up and down, so she moved me in a way to isolate one from the other so we knew which one was responsible for the movement. Surprisingly, the lesser muscle was actually stronger (I've realized that I'm never part of the norm). She told me that in a normal position, like laying on my back, my calf muscle responsible for the ankle movement has to fight my own tone and spasms...basically, I'm working against myself. I wonder how many other muscles I do this with?! Afterwards, we did some standing and she made me do most of the work. She was surprised at how well I did with the "sit to stand" and then how I was able to hold my knees and hips on my own. She had even called a tech over to help because she thought we would need them in order to get me to the standing position and then to help hold my hips once we were up. We didn't even need a second person!
Thursday was my first day of skiing. I volunteered as a patient for the Shenandoah PT program a few months ago and it went so well that I signed up to be a patient again for their "PT and ski" at Wintergreen resort. I spent an hour doing PT work and then an hour on the slopes. I haven't skied in years and I definitely hadn't had the opportunity to do adaptive skiing before. There are two types--a bi-ski and a mono-ski. The mono-ski doesn't require as much core or upper body strength, so that's what they start everyone on. It's kind of like a sled that I sit in. I had two "rigors" in each had that had blades on the bottom and I used them to steer with. I was tethered to another person behind me, either on skis or a snowboard, and they yelled out which direction to steer. It had been pretty warm last week, but Thursday was a lot colder and definitely windier. The snow was probably all fake and it was pretty icy, but it was such an awesome experience. I honestly was kind of dreading it because I absolutely hate the cold. I'm the first to volunteer to do anything, but I also like to try to talk myself out of it when the time comes because I'd rather stay home in my pjs in front of the fire, but I'm so glad I didn't bail. The PT went really well and I was surprising pretty good at the skiing! They kept having to make it harder, having me make sharp turns or weave in and out of different obstacles. They think I might be able to try a mono-ski sometime soon!
Dusty and I went to a nice brunch on Sunday to make up for our Valentine's Day apart (I have therapy on Tuesdays) and then went to a brewery. I think all we've been through has taught us that we should celebrate our love every day and that experiences last way longer than anything materialistic. Everyone kept asking me what he got me for Valentine's Day and I just couldn't help but think about how much things have changed. "What he got me?" Why does the day have to be about that? I mean, if you want to talk about what he got me, it's the Apple Watch he bought me for Christmas that will probably also be my Easter and Birthday presents as well, haha. Most importantly, we do things for each other on a regular basis. We show each other that we are constantly thinking of each other and if there happens to be something materialistic that reminds us of the other, we get it for them. Isn't that so much better anyways?
Today was luckily a much better day of therapy. (I needed that after how down I felt about yesterday!) Quyen was out sick, so I was with Rachel (one of my favorite therapists from the pool). She's so smart and always suggests something new for me to do by saying "why don't we try this?" Usually a therapist says that and it's kind of a disaster because we don't think everything through, but every time Rachel says it, I find something new that I'm able to do. She was the first one to make me swim in the pool and today, she was the first one to make me crawl and tall kneel walk over ground. She had to help me stabilize my hips and unweight the leg I was moving, but said that I was initiating the movements and I had to use both my core and arm strength. We also did the Ge-o and like I've said, I did the complete active mode for the first time a few weeks ago, meaning I was doing all the work. It was the first time they had a patient be able to "walk" in that mode that wasn't already walking, but we put the threshold, aka resistance, at 1 (the lowest it would go). The next week, Quyen made me do it at a resistance of 20 and she just made sure the balls of my feet made contact with the foot pedal with each step. Well...this week, Rachel had me in passive mode (where the machine did everything as a warm up), then we switched to active assist (where the machine did 40% and I did the rest), and she finally switched to completely active mode. However, she never changed the threshold! I was thinking about how well it was going, but it was also SO hard! I let a few minutes pass before I asked what the threshold was set at and she said 40! So I pretty much doubled the resistance I was at and that's a HUGE jump! (Quyen is going to be so pleased when she reads the notes from today!!)
I finished the day in the pool with Dennis. I was already exhausted from my session with Rachel, but knew Dennis wasn't going to take it easy on me. He had a student with him (who I really like and think is going to make a great therapist). We did walking with the water walker and it was so much better than the walking over ground yesterday. I was moving each leg forward completely on my own and for the first time, I wasn't using much hip compensation. It's so much easier to use my abs and hip to throw my legs forward, but I was focusing on just using my leg muscles (and Dennis noticed without me even saying that's what I was doing). We then did some kicking, side stepping and marching, all which went well and I was so relieved to leave Baltimore on such a high note after feeling defeated from my 20 minutes of struggle yesterday. Hopefully things continue on an uphill climb as I go to Wintergreen tomorrow for more PT and ski with the SU students!
First of all, Quyen did an assessment last Wednesday. I get one every four weeks (once a month) to track my progress, change/update my goals, and to determine if we should extend therapy based on any improvement seen. She did probably the most thorough assessment I've ever had. She did the normal tests and then moved my legs or repositioned my body to check movement in different positions in order to tell where certain movement was coming from and if I had any activation of smaller muscles we've never checked before. A lot of my reaching measurements improved from four weeks ago, meaning my core and balance are still getting stronger. I had new ankle movement that was even stronger in a different position. There are two muscles that move your ankle up and down, so she moved me in a way to isolate one from the other so we knew which one was responsible for the movement. Surprisingly, the lesser muscle was actually stronger (I've realized that I'm never part of the norm). She told me that in a normal position, like laying on my back, my calf muscle responsible for the ankle movement has to fight my own tone and spasms...basically, I'm working against myself. I wonder how many other muscles I do this with?! Afterwards, we did some standing and she made me do most of the work. She was surprised at how well I did with the "sit to stand" and then how I was able to hold my knees and hips on my own. She had even called a tech over to help because she thought we would need them in order to get me to the standing position and then to help hold my hips once we were up. We didn't even need a second person!
Thursday was my first day of skiing. I volunteered as a patient for the Shenandoah PT program a few months ago and it went so well that I signed up to be a patient again for their "PT and ski" at Wintergreen resort. I spent an hour doing PT work and then an hour on the slopes. I haven't skied in years and I definitely hadn't had the opportunity to do adaptive skiing before. There are two types--a bi-ski and a mono-ski. The mono-ski doesn't require as much core or upper body strength, so that's what they start everyone on. It's kind of like a sled that I sit in. I had two "rigors" in each had that had blades on the bottom and I used them to steer with. I was tethered to another person behind me, either on skis or a snowboard, and they yelled out which direction to steer. It had been pretty warm last week, but Thursday was a lot colder and definitely windier. The snow was probably all fake and it was pretty icy, but it was such an awesome experience. I honestly was kind of dreading it because I absolutely hate the cold. I'm the first to volunteer to do anything, but I also like to try to talk myself out of it when the time comes because I'd rather stay home in my pjs in front of the fire, but I'm so glad I didn't bail. The PT went really well and I was surprising pretty good at the skiing! They kept having to make it harder, having me make sharp turns or weave in and out of different obstacles. They think I might be able to try a mono-ski sometime soon!
Dusty and I went to a nice brunch on Sunday to make up for our Valentine's Day apart (I have therapy on Tuesdays) and then went to a brewery. I think all we've been through has taught us that we should celebrate our love every day and that experiences last way longer than anything materialistic. Everyone kept asking me what he got me for Valentine's Day and I just couldn't help but think about how much things have changed. "What he got me?" Why does the day have to be about that? I mean, if you want to talk about what he got me, it's the Apple Watch he bought me for Christmas that will probably also be my Easter and Birthday presents as well, haha. Most importantly, we do things for each other on a regular basis. We show each other that we are constantly thinking of each other and if there happens to be something materialistic that reminds us of the other, we get it for them. Isn't that so much better anyways?
Today was luckily a much better day of therapy. (I needed that after how down I felt about yesterday!) Quyen was out sick, so I was with Rachel (one of my favorite therapists from the pool). She's so smart and always suggests something new for me to do by saying "why don't we try this?" Usually a therapist says that and it's kind of a disaster because we don't think everything through, but every time Rachel says it, I find something new that I'm able to do. She was the first one to make me swim in the pool and today, she was the first one to make me crawl and tall kneel walk over ground. She had to help me stabilize my hips and unweight the leg I was moving, but said that I was initiating the movements and I had to use both my core and arm strength. We also did the Ge-o and like I've said, I did the complete active mode for the first time a few weeks ago, meaning I was doing all the work. It was the first time they had a patient be able to "walk" in that mode that wasn't already walking, but we put the threshold, aka resistance, at 1 (the lowest it would go). The next week, Quyen made me do it at a resistance of 20 and she just made sure the balls of my feet made contact with the foot pedal with each step. Well...this week, Rachel had me in passive mode (where the machine did everything as a warm up), then we switched to active assist (where the machine did 40% and I did the rest), and she finally switched to completely active mode. However, she never changed the threshold! I was thinking about how well it was going, but it was also SO hard! I let a few minutes pass before I asked what the threshold was set at and she said 40! So I pretty much doubled the resistance I was at and that's a HUGE jump! (Quyen is going to be so pleased when she reads the notes from today!!)
I finished the day in the pool with Dennis. I was already exhausted from my session with Rachel, but knew Dennis wasn't going to take it easy on me. He had a student with him (who I really like and think is going to make a great therapist). We did walking with the water walker and it was so much better than the walking over ground yesterday. I was moving each leg forward completely on my own and for the first time, I wasn't using much hip compensation. It's so much easier to use my abs and hip to throw my legs forward, but I was focusing on just using my leg muscles (and Dennis noticed without me even saying that's what I was doing). We then did some kicking, side stepping and marching, all which went well and I was so relieved to leave Baltimore on such a high note after feeling defeated from my 20 minutes of struggle yesterday. Hopefully things continue on an uphill climb as I go to Wintergreen tomorrow for more PT and ski with the SU students!
Tuesday, February 14, 2017
February 14, 2017
I've had a lot of people ask me how therapy and my recovery is "actually" going. I know it's easy to get wrapped up in social media and maybe perceive things as a certain way...plus, it's so much easier to post or talk about the good things that happen and not necessarily even mention any downfalls or low points. So, I guess I have some explaining to do. Also, I know some people maybe not have been following my journey the whole time and I want to catch everyone up at the same time.
After a whole year of not knowing what had attacked body and rendered me immobile in a matter of five days (in September 2015), my doctor at Hopkins was finally able to give me some answers last July (almost a year later). He said it was more than likely a mosquito borne virus that my body had a one in a million auto immune response towards, basically attacking itself and resulting in inflammation of my brain and entire spinal cord. My MRIs in August pretty much left him speechless. I still remember the night he called with the results. He told me that he looked at the scans, then looked again...and actually had to look one more time to be sure, but there was absolutely no damage on my scans. He thought for sure there would be something in the brain from the severe meningitis, but nothing. There's no damage to my spinal cord either, just atrophy that he described as "weakness." When I saw him this past December, my injury level had improved from T4 to T10 (in just five months) and he said my next goal was to take steps independently with a walker. I can't even begin to describe the feeling I had when he told me that he expects me to have a full recovery. This doesn't mean I'm going to be walking this week or even this year necessarily, but it's going to happen. And that's what I have to remind myself of on a daily basis.
The main thing I have focused on during this journey is that there has been constant improvement. I always hear other patients talk about hitting a "plateau" or a period of time where there is no progress. Honestly, it has scared me ever since I got sick. I feel like if I hit that point, I'd be in such a rut. Yeah, I'd still be determined, but I definitely think that would take a toll on my positive attitude. And that's another thing people ask me about--"how are you always so positive?" or "you're always smiling!" What other choice do I have? I guess I've always been like that because I know any other kind of attitude is just going to continue to send me in a downward spiral, but I haven't really had to deal with any kind of depression from lack of improvement because there has been continual progress. It's not always noticeable on a day to day basis, but when I look back, it's still a steady incline, nonetheless. I just have to take one day at a time and give it everything I have...and that's exactly what I've been doing. There aren't really any days off...and it's exhausting, but when I look back at old blog posts, videos, or pictures, I know all the sweat (and sometimes tears) are so worth it.
Like I've said, I basically had a cold that was sucking all of my energy for the past four weeks. I wasn't sleeping at night, I was constantly coughing, and just getting myself out of bed made me feel like I had completed a full therapy session. Regardless of how awful I felt, I still got up and gave each day 100%. Somehow, therapy kept getting better (and somehow, I still couldn't sleep even though I was so tired by the end of the day!) Luckily, I'm finally over all this junk. Dr. Kozlowski gave me a different antibiotic when I saw him on Friday for a routine blood work visit to check my thyroid and electrolyte levels (like we do at least every three months) and I got a prescription for cough medicine that has me finally sleeping through the night. I rode the bike at home yesterday and I think it went the best it's gone...my resistance stayed pretty high (making it harder for me to pedal) and my power increased (meaning that I was doing more work that I usually do). I still haven't done too much standing at home in my standing frame because all the medicine is making my blood pressure drop when I stand, but I figured a good session on the bike was a nice start. I also saw Dr. Busch (my new chiropractor that I absolutely adore). He's so smart and I learn a lot with every conversation we have (plus, I love hearing stories about his time in Rio with the paralympians). He's done some deep tissue massage type work on my shoulders and upper traps because they are always so tight...I think it's a combination of my posture when I'm sitting (something that I've been working on, but my abs just aren't as strong as they once were!) and the fact that I use my arms with everything I do, so those muscles are constantly in motion. Starting my week by seeing him both helps me recover from the week I've had and get ready to start a new one. This week, he also looked at my ankles because I had a therapist tell me one of my ankles was out of alignment last week...something about the bone on the top of my ankle was misaligned due to positioning when sitting and just not being as mobile on my feet as the average person. I'm glad I went because my shoulders and neck don't feel as tight and I now know that my ankles are in good shape to do some more gait training this week.
I was looking forward to getting to therapy this week because I have done well regardless of how run down I've felt, so I thought that me feeling better would have to reflect in the gym and in the pool. The pool went well this morning, not great in my opinion, but good. I did some standing, tall kneel walking forward and backwards then sideways, and finally some walking. I've had better sessions, but it was still good (especially the tall kneel work). There are just some mornings that my legs have more "tone" and the spasms and tightness kind of get in the way of whatever exercise I'm trying to do. It makes me work twice as hard, as well as the therapists that are with me. It wasn't too bad this morning, but I still thought it was kicking in a little bit. Overall, I was happy (not thrilled) with my performance. But to be honest, I'm my own worst critic and I'm always looking for improvement and thinking things could be better, so I'm probably not really the best person to ask, haha. I got a quick shower and went to the wellness gym so I could spend some time on the bike before lunch. I like doing things like the bike and stander outside of therapy because I don't see any reason in taking up my therapy time to do those things, especially since I do them at home on my own time anyways (why would I need to waste time that my therapist and I could be doing other things that I don't get a chance to do when I'm not in the main gym?) The bike went even better than it did yesterday. It took some time working out the technical difficulties (I had to switch to two different bikes and have my feet strapped in because the velcro wasn't tight enough to hold my feet in place), so I didn't get a full hour in, but the 40 minutes I did spend on the bike were well worth it. My schedule is pretty routine-- Tuesdays I do the Thera-stride with Dennis (on the treadmill with a harness and a person on each leg, helping me walk) and Wednesdays are for the Ge-o with Quyen. I didn't have quite as much tone on the thera-stride as usual, so it wasn't too bad. Sometimes, my legs do pretty much the opposite of what we want them to do and no only am I sweating, but each of the therapists working with me get their workout in for the day. I've had better days, but I've definitely had way worse days on that machine. I did, however, do a good job standing. They lowered the body weight and had me supporting more of my own weight (instead of the harness), and I was still able to stand straight, shoulders back and butt tucked in. I was even supporting my own knees for most of the time. I usually need a little knee support when I start standing and then can support them on my own, but my muscles are quite strong enough to hold it for very long. So much goes into standing! No one ever thinks about the little things, like how many muscles are working when your standing...no even walking, just standing still. So, one of my goals is to work on independent standing with the walker. If I can do this, we can graduate to walking or taking steps with the walker, but I feel like I need to break it down into small goals...one thing at a time. After the thera-stride, we tried to do some walking over ground. I still had the harness on, and this time, Dennis left the top half on because he wanted to try walking without the walker in order to really focus on my legs and not have me fully rely on my arms and pushing off the walker. I've been walking with no upper body support and doing really well, so I was thinking this would be way easier--I shouldn't have to work as hard because I have more support from an extra harness and I was feeling so much better now that my cold is almost gone. Well....I don't know what happened, but it was awful. I'll warn you now, I'm probably exaggerating, but I think it's the worst 20 minutes of therapy I've had...like ever, at least that I can recall. I had a different tech at my hips that Dee, who usually works with us, so maybe that was the difference...or maybe I was just tired because I'd already spent four hours in therapy. I don't feel like my legs were moving at all and I wasn't really progressing forward. I felt like my arms were doing way more work, when it should have been the opposite. I think Dennis could tell that I was working really hard and only getting more frustrated, because he suggested that we forget that ever happened and go stand in the parallel bars. I think I redeemed myself there. He wasn't giving me much support at the hips and hardly anything at the knees and I was able to pick my hands up off the bars for a few seconds at a time. A couple times, I was even able to keep a good posture and lift both hands up. I played volleyball with another therapist and actually kept one arm in the air the whole time we volleyed back and forth instead of grabbing the bar between each hit, which is already an improvement from last week. So, I guess the day really wasn't that awful, but I still just couldn't shake those 20 minutes of poor performance. It's the worst feeling knowing you're working as hard and you possibly can and not getting anywhere and that's how I felt trying to walk from one end of the gym to the other.
When Mom and I got back to the house we stay at while in Baltimore, she started talking to another woman in the lobby. A woman by the name of Tanya, whose three year old daughter has been going through leg lengthening procedures at the local hospital here. They're from 8 hours away and the mom has had a really hard time watching her little girl go through something that seems so painful. Mom told her that it doesn't get much better when your child is 25 either, haha. She said when your child starts feeling down about therapy, it's hard to pick them back up. You just have to focus on the positive. Mom told her about how I went on and on, saying I had the worst day of therapy ever when really, it was only 20 minutes...everything else went well--the pool, the bike, the thera-stride, the standing. It's all about perspective. Tanya stopped feeling so down and said how much that conversation helped her. When Mom told me about her conversation, I got to thinking...maybe I had to endure those 20 awful minutes so that she could tell that story to Tanya and help her to help her daughter. Maybe things really do happen for a reason and God makes me go through those downs or low points in order to help someone else or in order to make the high points feel that much sweeter.
So yeah, therapy and my recovery are going well. It's a steady incline, but it's not fast by any means. I still have bad days. I still get frustrated. I might cry here or there, but improvement is improvement and I think that's all I can ask for.
Tuesday, February 7, 2017
February 7, 2017
I still haven't quite kicked this cold of mine...luckily, I don't feel too bad. I just have this nagging cough, extremely tired abs, and haven't gotten a decent night of sleep in weeks. It's not holding me back any, in fact, therapy is somehow going better. I get worried I'm going to be too exhausted to do well, but I must be determined enough that I perform better. Who knows? Anyways, this lack of sleep is driving me crazy. I'm either coughing or wide awake with my mind running. This is what happened last night. During the few minutes I was asleep, I dreamt that I was rock climbing in a cave...I don't even remember who was with me, but I had the helmet on and everything. Of course, I woke up and let my thoughts take over the next hour or so. It got me thinking about dreams in general. Last week, Kristin's mom told me something-- Kristen has never once dreamt she was in a wheelchair. I started thinking about that...you know, I haven't either. Not even once have I had a dream where I was in a wheelchair or sick or anything like that. Maybe it means something. Ever since I got sick, I've been really big on these dreams. I hardly ever remember them, so when I do, I feel like there's something to it, like maybe there's a reason.
So here's my thought: have you ever prayed to God for a "sign"? or even not prayed about something and sought His help when maybe you should have? Maybe God uses dreams to make us listen. It's the one time He can actually have our attention. I've told the story a few times, but when I was in the ICU at UVA, I dreamt that Molly and I were walking around the nurses station all night. I told my mom the next day that I wasn't doing anything because I was way too tired from walking around with Molly all night. I wasn't even done telling the story when Molly texted both her and Dusty to say she dreamt we were walking around the nurses station all night. We literally had the same exact dream--right down to what we were wearing and what we were talking about. As if that weren't weird enough, when Molly called to tell her mom about it, her mom admitted that she had the same dream two nights before. It still gives me goosebumps! But really, ever since that, I've been really intrigued by dreams. So many people have told me about their dreams of me walking or running. And Dennis's dream! He's only dreamt of two patients, ever, and one was me. And if that weren't enough, he's had the same reoccurring dream THREE times of me walking into a BBQ with crutches to say hello.
I always have dreams like this when I start to have worries or doubts. Not that my dream of rock climbing in a cave was really a "sign," but maybe I needed reassurance that nothing is going to hold me back. That I can do whatever I want and there aren't any limitations. (but trust me, I don't really want to go rock climbing in a cave anytime soon).
So here's my thought: have you ever prayed to God for a "sign"? or even not prayed about something and sought His help when maybe you should have? Maybe God uses dreams to make us listen. It's the one time He can actually have our attention. I've told the story a few times, but when I was in the ICU at UVA, I dreamt that Molly and I were walking around the nurses station all night. I told my mom the next day that I wasn't doing anything because I was way too tired from walking around with Molly all night. I wasn't even done telling the story when Molly texted both her and Dusty to say she dreamt we were walking around the nurses station all night. We literally had the same exact dream--right down to what we were wearing and what we were talking about. As if that weren't weird enough, when Molly called to tell her mom about it, her mom admitted that she had the same dream two nights before. It still gives me goosebumps! But really, ever since that, I've been really intrigued by dreams. So many people have told me about their dreams of me walking or running. And Dennis's dream! He's only dreamt of two patients, ever, and one was me. And if that weren't enough, he's had the same reoccurring dream THREE times of me walking into a BBQ with crutches to say hello.
I always have dreams like this when I start to have worries or doubts. Not that my dream of rock climbing in a cave was really a "sign," but maybe I needed reassurance that nothing is going to hold me back. That I can do whatever I want and there aren't any limitations. (but trust me, I don't really want to go rock climbing in a cave anytime soon).
Monday, February 6, 2017
February 6, 2017 (by Nancy not Kelly)
Sorry it has been so long since an update. Kelly has been sick with an ear infection and upper respiratory crap. She has not let that halt her therapy or progress. She has now been in "long term therapy" two days a week for two weeks and it is going great. It seems like the worse she feels with this cold the better her therapy goes. She was exhausted and unable to get any rest because of the persistent cough but still made strides each day.
Many of you are aware of the struggle that we have been going through trying to get Kelly's wheelchair adjusted and modified to be comfortable for her. To make a long story (very long story) short, the chair has been a lemon. We are now meeting weekly with the distributor trying to fix the issues of exploding tire inner tubes, broken bolts, broken brakes and more. I am again, very thankful for the staff at KKI for helping us to deal with this problem. Erin has been such a great advocate in trying to get things corrected and I would be lost without her expertise.
On with the incredible week. Monday, Kelly had an appointment with Dr. Busch, the chiropractor. He is so incredibly intelligent and you can see his desire to help Kelly. He reviewed her progress and then did some massage and pressure treatments on her shoulders and scapulas. She was sore the next day but really feel a difference in how much looser her shoulders felt for therapy. He is a great addition to TEAM KELLY.
Tuesday morning was spent in the pool with Kim and she was cheering Kel on the entire time. She did some knee walking between the parallel bars both forward and backward. Then did side stepping. Her hip joints are really showing a lot of control as she was able to go left and right. Walking on the treadmill was made much tougher when Kim told Max to stand by but don't give her any hip support. She nailed it!
That afternoon was Dennis and the Therastride followed by over the ground walking. She had the "dream team" on the therastride and it went so well that she was able to support a lot more of her own weight and the two "leg movers" said they didn't have to fight her much at all. When Dennis had her walk over ground with harness and walker, Dee was amazed. She has always been Kelly's biggest cheerleader. Kelly was "racing" another patient across the gym and she was lapping him because she was determined to take a step before Dennis could even grab her leg to pull it forward. He told her that she was using both legs better than ever and he couldn't even pick a "stronger" leg. This is great news! Usually Dennis offers Kel a little break after each lap of the gym but not this time. He claimed that standing for 3 minutes (supporting her own weight) was enough of a break. He has become quite the slave driver!
We had a wonderful dinner with friends at a cute little bistro. Dara and her daughter, Kate, joined us and the McAllisters and it was such a nice break from therapy. Kate is such a delightful and sweet young lady and her mom embodies the spirit of KKI. It was fun to just laugh and enjoy one another's company while having a delightful dinner.
Wednesday Quyen had Kelly on the GEO. (KKI has one of two GEOs in the US.) She again changed the mode so that Kelly was driving the machine all by herself but increased the resistance this time from 1 to 20! She did so well that she turned the resistance up to 25 for the last 5 minutes. Kelly was exhausted, like she had run a race. Exhausted or not, there was still work to do. The next hour was spent on core exercises and tall knee work. Quyen told her that she can see a difference week to week.
We were able to schedule the afternoon pool time a little earlier and it was with Dennis. He and a student worked with her in the large pool (which doesn't have a treadmill). She worked on walking with a water walker. She did laps around the pool on her feet and on her knees. More side stepping in both directions which impressed the student and Dennis because she required minimal assistance to go right or left.
Overall a very successful week and we are now seeing improvements every time she reports to therapy. This week we will be in Baltimore for two days and then we go to Wintergreen for PT and SKI with Shenandoah University. We will see about the ski part since it is supposed to be 60-65 and raining this week.
We are hoping to proceed with Kelly's DMV testing, her school work (which has been a bit of a nightmare), and looking for me a job that will fit in with life. We are also trying to look at modifying our hall bathroom to make it more usable by Kelly and Grandma. So much going on and so little time to fill you all in. Thanks for your continued support. It means the world to all of us.
Many of you are aware of the struggle that we have been going through trying to get Kelly's wheelchair adjusted and modified to be comfortable for her. To make a long story (very long story) short, the chair has been a lemon. We are now meeting weekly with the distributor trying to fix the issues of exploding tire inner tubes, broken bolts, broken brakes and more. I am again, very thankful for the staff at KKI for helping us to deal with this problem. Erin has been such a great advocate in trying to get things corrected and I would be lost without her expertise.
On with the incredible week. Monday, Kelly had an appointment with Dr. Busch, the chiropractor. He is so incredibly intelligent and you can see his desire to help Kelly. He reviewed her progress and then did some massage and pressure treatments on her shoulders and scapulas. She was sore the next day but really feel a difference in how much looser her shoulders felt for therapy. He is a great addition to TEAM KELLY.
Tuesday morning was spent in the pool with Kim and she was cheering Kel on the entire time. She did some knee walking between the parallel bars both forward and backward. Then did side stepping. Her hip joints are really showing a lot of control as she was able to go left and right. Walking on the treadmill was made much tougher when Kim told Max to stand by but don't give her any hip support. She nailed it!
That afternoon was Dennis and the Therastride followed by over the ground walking. She had the "dream team" on the therastride and it went so well that she was able to support a lot more of her own weight and the two "leg movers" said they didn't have to fight her much at all. When Dennis had her walk over ground with harness and walker, Dee was amazed. She has always been Kelly's biggest cheerleader. Kelly was "racing" another patient across the gym and she was lapping him because she was determined to take a step before Dennis could even grab her leg to pull it forward. He told her that she was using both legs better than ever and he couldn't even pick a "stronger" leg. This is great news! Usually Dennis offers Kel a little break after each lap of the gym but not this time. He claimed that standing for 3 minutes (supporting her own weight) was enough of a break. He has become quite the slave driver!
We had a wonderful dinner with friends at a cute little bistro. Dara and her daughter, Kate, joined us and the McAllisters and it was such a nice break from therapy. Kate is such a delightful and sweet young lady and her mom embodies the spirit of KKI. It was fun to just laugh and enjoy one another's company while having a delightful dinner.
Wednesday Quyen had Kelly on the GEO. (KKI has one of two GEOs in the US.) She again changed the mode so that Kelly was driving the machine all by herself but increased the resistance this time from 1 to 20! She did so well that she turned the resistance up to 25 for the last 5 minutes. Kelly was exhausted, like she had run a race. Exhausted or not, there was still work to do. The next hour was spent on core exercises and tall knee work. Quyen told her that she can see a difference week to week.
We were able to schedule the afternoon pool time a little earlier and it was with Dennis. He and a student worked with her in the large pool (which doesn't have a treadmill). She worked on walking with a water walker. She did laps around the pool on her feet and on her knees. More side stepping in both directions which impressed the student and Dennis because she required minimal assistance to go right or left.
Overall a very successful week and we are now seeing improvements every time she reports to therapy. This week we will be in Baltimore for two days and then we go to Wintergreen for PT and SKI with Shenandoah University. We will see about the ski part since it is supposed to be 60-65 and raining this week.
We are hoping to proceed with Kelly's DMV testing, her school work (which has been a bit of a nightmare), and looking for me a job that will fit in with life. We are also trying to look at modifying our hall bathroom to make it more usable by Kelly and Grandma. So much going on and so little time to fill you all in. Thanks for your continued support. It means the world to all of us.
Tuesday, January 24, 2017
January 24 (Back at it in Baltimore)
Kelly is exhausted and fighting a bad cold so I said I would fill in again. I'm going to try to write about her exciting day and I hope I can do it justice.
We are back in Baltimore two days a week for "long term" therapy. That means pool on Tuesday morning followed by 2 hours of PT in the afternoon and then Wednesday morning PT for 2 hours followed by pool in the afternoon. It's great that we only have to stay for one night a week but it's a lot of moving in and out of our place.
In order to get Kelly into a long term slot she has to be assigned to two therapists. This is a bonus as far as we are concerned. Everyone at KKI is so great at different therapies that we love having new ideas and treatments to try.
Today started in the pool with Rachel. She couldn't believe how well Kelly was crawling and walking on her knees. They also worked on moving side to side. Kelly moved so well. Rachel also had her walk with the walker in pool on the treadmill and it went much better than last week. She did use a little more hip support but I'm not surprised after how wiped out Kel has felt from this terrible cold.
The afternoon was spent with Dennis! He was her therapist for months and we didn't realize how much we missed him. He started by putting her on the Therastride. He had her walking at a very quick pace and everyone was working so hard to make her legs move correctly on the treadmill. In between her walks he would have her stand for a few minutes. During that time she was supporting more than 70% of her own weight and Dennis wasn't even supporting her right knee at all.
Research has shown that walking with the harness goes much better after some rapid walking the Therastride. Dennis was very uncomfortable taking the upper part (the core support) part of the harness off to walk with the walker. He told Kelly that he was afraid she would fall. She showed him how well she has been doing. He actually was so excited about her progress that he was almost choked up. He told her that he may cry. So sweet! She showed him by walking 4 lengths of the gym. Dee (the PT aid) hasn't worked with Kelly since August and she kept telling me "I'm not doing anything to help her with hip support. This is incredible". I am so thankful for such caring people that rejoice in my daughter's victories.
The day ended with some work on her knees. Again, she showed off how much stronger she is becoming.
Dennis always makes us feel comfortable asking questions and he always has great feedback for us. I asked him about a few different therapies and treatments that we have seen at KKI and he was quick to tell us that most of what I was asking about is reserved for those that have hit a plateau or are no longer experiencing nerve regeneration. He said that Kelly doesn't qualify for them because she is showing too much progress. WONDERFUL!
Dennis also told us a sweet story about himself. He said he has only dreamt about two of his patients walking. He said he has dreamt about Kelly walking three times now. Always the same dream of her walking into a BBQ with crutches and saying hello to him. Great to know that even more people are dreaming about her being on her feet.
We ended a great day with wonderful friends. Having dinner with the McAllisters is always so good for us. We love spending time with a family that is going through similar struggles. We always learn so much from hanging out with other SCI (spinal cord injury) families. The emotional support is priceless and we have friends for life. It's great to reconnect with our friends that we haven't seen since August. Especially great to see all the progress that they are making.
Tomorrow morning therapy starts at 8 am with Quyen. Looking forward to impressing someone else!
We are back in Baltimore two days a week for "long term" therapy. That means pool on Tuesday morning followed by 2 hours of PT in the afternoon and then Wednesday morning PT for 2 hours followed by pool in the afternoon. It's great that we only have to stay for one night a week but it's a lot of moving in and out of our place.
In order to get Kelly into a long term slot she has to be assigned to two therapists. This is a bonus as far as we are concerned. Everyone at KKI is so great at different therapies that we love having new ideas and treatments to try.
Today started in the pool with Rachel. She couldn't believe how well Kelly was crawling and walking on her knees. They also worked on moving side to side. Kelly moved so well. Rachel also had her walk with the walker in pool on the treadmill and it went much better than last week. She did use a little more hip support but I'm not surprised after how wiped out Kel has felt from this terrible cold.
The afternoon was spent with Dennis! He was her therapist for months and we didn't realize how much we missed him. He started by putting her on the Therastride. He had her walking at a very quick pace and everyone was working so hard to make her legs move correctly on the treadmill. In between her walks he would have her stand for a few minutes. During that time she was supporting more than 70% of her own weight and Dennis wasn't even supporting her right knee at all.
Research has shown that walking with the harness goes much better after some rapid walking the Therastride. Dennis was very uncomfortable taking the upper part (the core support) part of the harness off to walk with the walker. He told Kelly that he was afraid she would fall. She showed him how well she has been doing. He actually was so excited about her progress that he was almost choked up. He told her that he may cry. So sweet! She showed him by walking 4 lengths of the gym. Dee (the PT aid) hasn't worked with Kelly since August and she kept telling me "I'm not doing anything to help her with hip support. This is incredible". I am so thankful for such caring people that rejoice in my daughter's victories.
The day ended with some work on her knees. Again, she showed off how much stronger she is becoming.
Dennis always makes us feel comfortable asking questions and he always has great feedback for us. I asked him about a few different therapies and treatments that we have seen at KKI and he was quick to tell us that most of what I was asking about is reserved for those that have hit a plateau or are no longer experiencing nerve regeneration. He said that Kelly doesn't qualify for them because she is showing too much progress. WONDERFUL!
Dennis also told us a sweet story about himself. He said he has only dreamt about two of his patients walking. He said he has dreamt about Kelly walking three times now. Always the same dream of her walking into a BBQ with crutches and saying hello to him. Great to know that even more people are dreaming about her being on her feet.
We ended a great day with wonderful friends. Having dinner with the McAllisters is always so good for us. We love spending time with a family that is going through similar struggles. We always learn so much from hanging out with other SCI (spinal cord injury) families. The emotional support is priceless and we have friends for life. It's great to reconnect with our friends that we haven't seen since August. Especially great to see all the progress that they are making.
Tomorrow morning therapy starts at 8 am with Quyen. Looking forward to impressing someone else!
Sunday, January 22, 2017
January 22
For the last two weeks, I've had muscles ache that I hadn't even felt in over a year. Like my abs, for instance. As soon as each therapist learned that I could now get myself on all fours, they wanted to do it...OVER and OVER. As if that weren't enough, I was crawling both in the pool and in the gym. I know it may not sound like much, but it was so difficult! I just kept doing it and pushing through because I was excited about my new abilities, but my abs have been sore since the day I started back at KKI. And I'm not just talking about "oh, that's a little sore because I did some sit-ups," I'm talking about "oh my gosh, it hurts to laugh!"
I really think I pushed my body to complete exhaustion because now, I'm not only sore all over, but I have a bit of a cold. I'm thankful to not have any plans this weekend, because all I want to do is lay around. (And that's saying something because I HATE staying in bed longer than necessary...the day I got out of the hospital, I vowed to not waste time in bed during the day unless I needed to). I think this is one of those times where I really need to let my body rest and recover.
I start my long term therapy this week on Tuesday with Dennis and Wednesday with Quyen (pronounced "queen). I'm in the pool and the gym both days and while it's only twice a week, I know it's still going to be tiring. I'm also looking forward to the week because my friend, Kristen, will be in town from Knoxville for her two weeks of boot camp. Her and her parents will be staying at the same place as us, so I'm hoping we'll have time to catch up if we both aren't too exhausted, haha.
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