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!
Tuesday, January 24, 2017
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.
Saturday, January 21, 2017
January 21
I feel like it's been forever since I have written an update. These last two weeks went by pretty fast when I look back on them, but they were absolutely exhausting. Each day actually felt like a full time job. I woke up and just getting out of bed and getting dressed made me feel like I'd been in the gym, doing sit-ups for two full hours. Most mornings, I woke up, was in the pool by 8:30 (for an hour) and then back to the gym for three full hours of therapy. Many days, I still ended up going to the wellness gym in the afternoon to ride the bike or get in a standing frame, as if four full hours of pushing my body to pure exhaustion wasn't enough. Last week, I even went back to the room and studied until bed because I had an exam on Saturday. I was also crazy enough to have gone to the gym last Monday and lifted weights, but was really paying for it by the end of the week (I could hardly hold myself up with the walker!). I was so used to how things used to be when I was in therapy over five months ago. I never really fatigued before and couldn't understand why everyone else would talk about how tired they were by Thursday that they barely made it back by Friday. Trust me, I understand now. I think everything was just passive up until now...I wasn't strong enough to actually do the work myself. I was just letting the therapists move me, but now I'm strong enough to be doing the work on my own. All the therapists even tell me "I'm not even doing anything!" during each session (oh, and I know it, because I'M doing all the work!)
I really ended this week strong, despite how many times I wanted to stop right there in the middle of the gym. I started the week by discovering that I could crawl in the pool- both on my hands and knees and just on my knees (while holding my therapist's hands). The next pool session, we tried it again, but Dennis made me crawl while on the treadmill. This meant one thing--I had to go fast enough to keep up with the treadmill speed! We also even used the walker on the treadmill and I had to walk forward and backwards (it was as hard as it sounds!) The most difficult part was holding my own hips and stepping, all while moving the walker.
Every time we did something in the gym, it was better than the previous attempt. The therastride was better Friday than I'd ever done it and the techs even commented on how different it seemed than past sessions. Same with walking over ground. I still use the waist harness attached to the lift over head to take away some of the body weight, making it a little easier for me. And I still had someone at my hips, helping keep me up straight, but it was still improving. By the end of last week, I didn't need the upper body harness (which was a huge improvement since August...I actually remember Dennis trying to take away that support and I just fell forward. I went home and told Dusty I was never going to be able to walk because I couldn't even support my own upper body, let alone do the rest of what is required to walk). Then yesterday, we did the walking over ground as my last activity. I was tired from already being in the gym for three hours and because it was Friday, but I was going to give it my all right up until the very end. I had the lower harness on and someone pushing my hips forward a little, so my butt wasn't sticking out (my lower abs still aren't quite strong enough to keep my in good position for very long--what my therapists call a "posterior pelvic tilt." I like to relax in a more anterior position). I was using a walker and Erin was in front of me, keeping my stance knee straight so that I could get a better weight shift on it, but the stepping with the other leg was ALL ME. For the first time! I didn't need any help pulling my foot through. I'm usually able to initiate a step, or complete it, but the main problem is that my toes always get caught. Well, for the first time, that wasn't happening at all. It went so well and I was so tired, but also so determined. I completed as many laps up and down the gym as time would allow and am surprised I didn't sleep the whole way home.
I know I have a long ways to go, but I'm really thankful that I still have yet to hit that "plateau" of progress that everyone keeps warning me about. I go weeks without thinking much has changed and then it takes a week like I just had to show me how much really has changed. It takes a therapist saying "I wonder if you can do this." or Mom saying "I had a dream that you could do this, let's try it." It's one small goal at a time, which has been hard for me, because I'd rather chase after the big goals and achieve the whole picture, but KKI instills new hope in me every time I'm there and I'm so thankful my path has led me there because I don't think I would've been able to see this much improvement (and continue to) if I weren't there.
I really ended this week strong, despite how many times I wanted to stop right there in the middle of the gym. I started the week by discovering that I could crawl in the pool- both on my hands and knees and just on my knees (while holding my therapist's hands). The next pool session, we tried it again, but Dennis made me crawl while on the treadmill. This meant one thing--I had to go fast enough to keep up with the treadmill speed! We also even used the walker on the treadmill and I had to walk forward and backwards (it was as hard as it sounds!) The most difficult part was holding my own hips and stepping, all while moving the walker.
Every time we did something in the gym, it was better than the previous attempt. The therastride was better Friday than I'd ever done it and the techs even commented on how different it seemed than past sessions. Same with walking over ground. I still use the waist harness attached to the lift over head to take away some of the body weight, making it a little easier for me. And I still had someone at my hips, helping keep me up straight, but it was still improving. By the end of last week, I didn't need the upper body harness (which was a huge improvement since August...I actually remember Dennis trying to take away that support and I just fell forward. I went home and told Dusty I was never going to be able to walk because I couldn't even support my own upper body, let alone do the rest of what is required to walk). Then yesterday, we did the walking over ground as my last activity. I was tired from already being in the gym for three hours and because it was Friday, but I was going to give it my all right up until the very end. I had the lower harness on and someone pushing my hips forward a little, so my butt wasn't sticking out (my lower abs still aren't quite strong enough to keep my in good position for very long--what my therapists call a "posterior pelvic tilt." I like to relax in a more anterior position). I was using a walker and Erin was in front of me, keeping my stance knee straight so that I could get a better weight shift on it, but the stepping with the other leg was ALL ME. For the first time! I didn't need any help pulling my foot through. I'm usually able to initiate a step, or complete it, but the main problem is that my toes always get caught. Well, for the first time, that wasn't happening at all. It went so well and I was so tired, but also so determined. I completed as many laps up and down the gym as time would allow and am surprised I didn't sleep the whole way home.
I know I have a long ways to go, but I'm really thankful that I still have yet to hit that "plateau" of progress that everyone keeps warning me about. I go weeks without thinking much has changed and then it takes a week like I just had to show me how much really has changed. It takes a therapist saying "I wonder if you can do this." or Mom saying "I had a dream that you could do this, let's try it." It's one small goal at a time, which has been hard for me, because I'd rather chase after the big goals and achieve the whole picture, but KKI instills new hope in me every time I'm there and I'm so thankful my path has led me there because I don't think I would've been able to see this much improvement (and continue to) if I weren't there.
Tuesday, January 17, 2017
January 17 (has it really been that long?)
Friday was the last day of the week and the last day in Baltimore. Kelly spent the morning on the RT600 with stim to all of her walking muscles followed by walking "over ground" suspended in a harness. The harness is hard to tolerate because of the upper body support it gives. Erin was able to rig a harness that didn't have any upper body or core support. It seemed a lot more comfortable for Kel. The comfort was exchanged for support and that meant when walking with the walker Kelly had to support her upper body herself. After one lap across the gym she was spent. This is the first time that I have seen Kelly say she was exhausted.
Pool time in the afternoon allowed Kelly to walk with the water walker. Sarah told me that the difficulty in working with Kel came in waves. At first she was easy to work with in the pool because the therapists did all the work, then it became hard to work with her when her body started to fight and spasm against the walking and now it's easy to work with her again because she does all the work. Kelly can definitely feel that! She is working so hard!
We had a nice weekend home and came back to Baltimore on Monday evening so we could start in the pool at 830 today. Kelly had an amazing day! She started in the pool crawling and walking on her knees UNASSISTED! Kim has a way of making Kelly do things that she has never done before! Then she spent her gym time with Julie (someone we hadn't met before but because Liza was sick we got to meet her). Julie gave us so much new information about STIM and how to use the bike to it's ultimate uses. It's wonderful that having a "substitute therapist" is a way of getting another set of eyes on her.
She wouldn't stop after a full and exhausting session of ab work on her hands and knees. She had to spend an hour and half in the wellness gym using the bike. We can't say enough about how great the staff are at problem solving and making sure that she is getting the most out of every session. Kim and Damon in the gym help us to make sure Kel is positioned well and getting the most out of every session.
Back at our place tonight, I went out to the kitchen and talked to my friend, Ali, who I spoke had spoke to briefly last night. He told me that he and his wife are thinking about relocating someplace warm because they have been so unhappy since leaving Lebanon. He asked about Kelly and I quickly told him her story. He thanked me for sharing and confirming his need to relocate his family from Michigan to Florida. He said, "you don't know what tomorrow holds and it's so important to be make the most of today and be happy". He told me that he would pray for Kelly to walk soon and I told him that I would pray for him to find happiness and to have a safe trip home tomorrow.
I would not have picked this path in life but it has been an amazing journey with some of the most amazing people. I am thankful every day for the people that have put in our path. We are on a journey with some of the greatest heroes I have ever met.
Pool time in the afternoon allowed Kelly to walk with the water walker. Sarah told me that the difficulty in working with Kel came in waves. At first she was easy to work with in the pool because the therapists did all the work, then it became hard to work with her when her body started to fight and spasm against the walking and now it's easy to work with her again because she does all the work. Kelly can definitely feel that! She is working so hard!
We had a nice weekend home and came back to Baltimore on Monday evening so we could start in the pool at 830 today. Kelly had an amazing day! She started in the pool crawling and walking on her knees UNASSISTED! Kim has a way of making Kelly do things that she has never done before! Then she spent her gym time with Julie (someone we hadn't met before but because Liza was sick we got to meet her). Julie gave us so much new information about STIM and how to use the bike to it's ultimate uses. It's wonderful that having a "substitute therapist" is a way of getting another set of eyes on her.
She wouldn't stop after a full and exhausting session of ab work on her hands and knees. She had to spend an hour and half in the wellness gym using the bike. We can't say enough about how great the staff are at problem solving and making sure that she is getting the most out of every session. Kim and Damon in the gym help us to make sure Kel is positioned well and getting the most out of every session.
Back at our place tonight, I went out to the kitchen and talked to my friend, Ali, who I spoke had spoke to briefly last night. He told me that he and his wife are thinking about relocating someplace warm because they have been so unhappy since leaving Lebanon. He asked about Kelly and I quickly told him her story. He thanked me for sharing and confirming his need to relocate his family from Michigan to Florida. He said, "you don't know what tomorrow holds and it's so important to be make the most of today and be happy". He told me that he would pray for Kelly to walk soon and I told him that I would pray for him to find happiness and to have a safe trip home tomorrow.
I would not have picked this path in life but it has been an amazing journey with some of the most amazing people. I am thankful every day for the people that have put in our path. We are on a journey with some of the greatest heroes I have ever met.
Thursday, January 12, 2017
January 12 (and 11) because I slacked!
Yesterday was a busy day with PT and an appointment with Dr. Recio (the rehab physician). Kelly started with PNF (Proprioceptive neuromuscular facilitation which is used to enhance range of motion) She always seems to respond well to this treatment and this session seemed to settle down some of the muscle spasms that she has been having.
The second hour was spent on the Therastride which is a modified treadmill that has a harness to suspend the walker. She was able to support more of her own weight than before and the techs were all impressed at the changes they saw in her. This involves having someone holding her hips for stability and one person on each leg to move her feet in a walking motion as one more person controls the computer that regulates the weight bearing and speed. The latest research states that doing the therastride on a fast speed (almost speed walking) creates more muscle memory and has better results when it comes to walking over ground. Kelly was almost running on the treadmill. I watch while everyone is laughing and enjoying her willingness to try anything they throw her way.
Lastly she did the walking over land with a walker. They suspend her in a harness that hangs from the ceiling and she has someone stabilizing her hips while a therapist assists her legs to walk forward. After reviewing the videos that I took in August it was obvious that she was initiating so much more of the stepping on her own! AMAZING! She even stated that it was a hard workout and she needed a break. She never takes time to rest. She was really working all of her muscles!
Meeting with Dr. Recio is always a fun hour as he is very enthusiastic about his patients. He spends a lot of time talking to Kelly and explaining things. He kept stating that he was impressed. He does not want to add any medicines to her treatment at this time because she is "making too much progress". He told her that he is looking forward to her ASIA assessment that is scheduled next week. He knows that it will show great improvement.
The day ended with an hour in the stander and lots of homework. She doesn't quit. When she gets into bed at night she is asleep before I can say goodnight.
Today started in the pool with Kim and she is always excited to push Kelly further than anyone else has. The pool has a treadmill and parallel bars that allow walking with a therapist moving legs and feet. In the past Kelly has been known to give the techs a workout when they are at her hips because she didn't have much control. Today she walked for 2 minutes without a tech in the water. Kim moved her feet (mostly just lifted them while Kelly brought them forward) and Kelly did the rest. There was a lot of celebrating in the pool!
Many therapies are designed to control the spasticity that she is experiencing now. The rest of the time is spent gait training. Today she used the GEO which reminds me of a walking machine that looks a little like roller skating. Two therapist were working with her and they would have the machine in passive mode and then switch it to a passive/assist mode. They kept making it harder and harder until they finally turned off the passive mode all together and Kelly drove the machine 100% independently. Both PT's said they have never had a patient that wasn't all ready walking that could initiate and follow through the movement without assistance. More cheering!!!!
The day ended in the wellness gym (because she hadn't had enough!). Erin programmed the STIM bike so she could put patches on her back and belly to stim her spinal cord directly. It seemed to go very well. She is getting so much power in her legs now that connecting the bike has become a challenge because she "breaks out" of the velcro straps. The gym techs worked with her to make all the adjustments.
This place is just amazing! Everyone celebrates the victories with us and I am so thankful for each person that we get to work with.
Long term therapy has now been scheduled. Kelly will be coming to KKI on Tuesdays and Wednesdays Dennis will be her therapist on Tuesdays and we are looking forward to his reaction to all the progress she has made.
Sorry for the long post but I know that so many of you are wanting to know the details of what she is up to. It helps us too to be able to look back and see what was going on.
The second hour was spent on the Therastride which is a modified treadmill that has a harness to suspend the walker. She was able to support more of her own weight than before and the techs were all impressed at the changes they saw in her. This involves having someone holding her hips for stability and one person on each leg to move her feet in a walking motion as one more person controls the computer that regulates the weight bearing and speed. The latest research states that doing the therastride on a fast speed (almost speed walking) creates more muscle memory and has better results when it comes to walking over ground. Kelly was almost running on the treadmill. I watch while everyone is laughing and enjoying her willingness to try anything they throw her way.
Lastly she did the walking over land with a walker. They suspend her in a harness that hangs from the ceiling and she has someone stabilizing her hips while a therapist assists her legs to walk forward. After reviewing the videos that I took in August it was obvious that she was initiating so much more of the stepping on her own! AMAZING! She even stated that it was a hard workout and she needed a break. She never takes time to rest. She was really working all of her muscles!
Meeting with Dr. Recio is always a fun hour as he is very enthusiastic about his patients. He spends a lot of time talking to Kelly and explaining things. He kept stating that he was impressed. He does not want to add any medicines to her treatment at this time because she is "making too much progress". He told her that he is looking forward to her ASIA assessment that is scheduled next week. He knows that it will show great improvement.
The day ended with an hour in the stander and lots of homework. She doesn't quit. When she gets into bed at night she is asleep before I can say goodnight.
Today started in the pool with Kim and she is always excited to push Kelly further than anyone else has. The pool has a treadmill and parallel bars that allow walking with a therapist moving legs and feet. In the past Kelly has been known to give the techs a workout when they are at her hips because she didn't have much control. Today she walked for 2 minutes without a tech in the water. Kim moved her feet (mostly just lifted them while Kelly brought them forward) and Kelly did the rest. There was a lot of celebrating in the pool!
Many therapies are designed to control the spasticity that she is experiencing now. The rest of the time is spent gait training. Today she used the GEO which reminds me of a walking machine that looks a little like roller skating. Two therapist were working with her and they would have the machine in passive mode and then switch it to a passive/assist mode. They kept making it harder and harder until they finally turned off the passive mode all together and Kelly drove the machine 100% independently. Both PT's said they have never had a patient that wasn't all ready walking that could initiate and follow through the movement without assistance. More cheering!!!!
The day ended in the wellness gym (because she hadn't had enough!). Erin programmed the STIM bike so she could put patches on her back and belly to stim her spinal cord directly. It seemed to go very well. She is getting so much power in her legs now that connecting the bike has become a challenge because she "breaks out" of the velcro straps. The gym techs worked with her to make all the adjustments.
This place is just amazing! Everyone celebrates the victories with us and I am so thankful for each person that we get to work with.
Long term therapy has now been scheduled. Kelly will be coming to KKI on Tuesdays and Wednesdays Dennis will be her therapist on Tuesdays and we are looking forward to his reaction to all the progress she has made.
Sorry for the long post but I know that so many of you are wanting to know the details of what she is up to. It helps us too to be able to look back and see what was going on.
Tuesday, January 10, 2017
January 10, 2017
As I write the date I am amazed at the time that has passed during this journey. It seems like we have been at it forever and yet it seems like just yesterday that Kelly got sick. Crazy! Before I inform you of our interesting day I would like to tell you how overwhelmed I have been by so many things. I am humbled at the overwhelming support of our community. All of our communities! There are people from so many different groups that we have been blessed to call our friends. Thank you all so much for everything that you have done and continue to do for us. I can't even begin to name the amazing things that people have done to support us on this journey. Even if it is just smiling and encouraging us, we are so thankful!
I am daily reminded how blessed we are with the progress that Kelly has made and today was no exception. That being said, let me back up and take you through the day in the order that it happened. We started with a bang! Kelly has a new Apple Watch that Dusty gave her for Christmas (what a help when it comes to counting calories burned and consumed. Apple is the only app that counts "push strides" in a wheelchair and converts it to calories burned). Unknown to us, the watch is set up with an emergency feature that dials 911 when a button is held. While getting ready this morning we heard "911 what is your emergency?". Crazy! After getting off the phone (or watch in this case) we looked it up and this feature can even be programmed to notify your emergency contact list that you have dialed 911. Thank God we figured out how to suspend this feature unless the action is confirmed by the wearer. Can you imagine?
Kelly's therapist on Tuesday's is Liza and Kelly already had a great relationship with her prior to this visit. (Liza's twin sister is Kelly's trainer Vicki that she has spoke of before). Liza took the task of wearing Kelly out very serious (just like her sister). She did some enhancement of isolated muscle groups using the Vectra (direct electrical stimulation of the spinal cord). Kelly was able to see more pronounce movement than she saw yesterday in her assessment with Erin. I missed this part of the therapy session because I drove back to the room to pick up loose pants that were needed for the rest of the session. I was back on time to see her up on her hands and knees unassisted doing some cat/cows. (arching and lowering her back while working her ab muscles)
The rest of the morning was spent on the RT600. This machine is similar to the STIM bike that Kelly has at home but it suspends her in a harness and allows her to support a percentage of her own weight. Today she supported 70% of her own weight. That's way more than she was doing when she left KKI in August. This machine is great and Kelly loves the work out it gives her but the only draw back is that it takes a lot of time to set up. So many connections and adjustments! I am becoming quite the PT assistant these days! I know that sometimes the best way for me to assist is to get out of the way. Today was one of those days.
After lunch she had a little time to study and then it was up to the pool. We have a special relationship with the pool staff because there are only a few of them and they are there everyday. Kelly got into the "big" pool (that's the one without the treadmill) to work on some tips of how we can walk in the pool at home. Meredith started by telling Kelly that she had reviewed the notes from her assessment yesterday and felt that she could help her with some standing and walking tips. When the floor went down and Kelly was in water about to her upper thighs Meredith asked her to try to stand up and so she could see where Kel's weakness were. Kelly popped right up and holding onto to the bar kept herself upright with knees straight. Everyone cheered while Meredith kept stating that she couldn't believe what she was seeing. The pool techs even went and got the one tech that was in the office so she could see it. Everyone kept talking about how much she had progressed since they saw her last. She finished the hour with walking with the water walker ( a rectangle of funoodles that keeps her arms at the water level). We were given a lot of tips that will help us with our home routine. When Meredith got the walker adjusted just right Kelly was initiating and taking steps on her own. She kept saying "that's all you!" It was a great session and I look forward to getting in the water with them on Friday to practice what I learned.
Kelly still struggles with getting the appropriate people to return her calls about school. The frustration is compounded by people asking her all day how school is going. She has called and emailed numerous times and can't seem to get answers. I am thankful for her persistence. She has scheduled one final for Saturday and hopes to finish up the other class in the next week too. I know she's tired at the end of the day but she still pushes through and gets her work done.
Tomorrow we see Dr. Recio and we are anxious to hear what has planned for Kelly. Even more excited to see what he thinks of her progress.
I will keep you all informed. I will ask Kelly to help me attach some photos tomorrow so you can see what we are up to.
I am daily reminded how blessed we are with the progress that Kelly has made and today was no exception. That being said, let me back up and take you through the day in the order that it happened. We started with a bang! Kelly has a new Apple Watch that Dusty gave her for Christmas (what a help when it comes to counting calories burned and consumed. Apple is the only app that counts "push strides" in a wheelchair and converts it to calories burned). Unknown to us, the watch is set up with an emergency feature that dials 911 when a button is held. While getting ready this morning we heard "911 what is your emergency?". Crazy! After getting off the phone (or watch in this case) we looked it up and this feature can even be programmed to notify your emergency contact list that you have dialed 911. Thank God we figured out how to suspend this feature unless the action is confirmed by the wearer. Can you imagine?
Kelly's therapist on Tuesday's is Liza and Kelly already had a great relationship with her prior to this visit. (Liza's twin sister is Kelly's trainer Vicki that she has spoke of before). Liza took the task of wearing Kelly out very serious (just like her sister). She did some enhancement of isolated muscle groups using the Vectra (direct electrical stimulation of the spinal cord). Kelly was able to see more pronounce movement than she saw yesterday in her assessment with Erin. I missed this part of the therapy session because I drove back to the room to pick up loose pants that were needed for the rest of the session. I was back on time to see her up on her hands and knees unassisted doing some cat/cows. (arching and lowering her back while working her ab muscles)
The rest of the morning was spent on the RT600. This machine is similar to the STIM bike that Kelly has at home but it suspends her in a harness and allows her to support a percentage of her own weight. Today she supported 70% of her own weight. That's way more than she was doing when she left KKI in August. This machine is great and Kelly loves the work out it gives her but the only draw back is that it takes a lot of time to set up. So many connections and adjustments! I am becoming quite the PT assistant these days! I know that sometimes the best way for me to assist is to get out of the way. Today was one of those days.
After lunch she had a little time to study and then it was up to the pool. We have a special relationship with the pool staff because there are only a few of them and they are there everyday. Kelly got into the "big" pool (that's the one without the treadmill) to work on some tips of how we can walk in the pool at home. Meredith started by telling Kelly that she had reviewed the notes from her assessment yesterday and felt that she could help her with some standing and walking tips. When the floor went down and Kelly was in water about to her upper thighs Meredith asked her to try to stand up and so she could see where Kel's weakness were. Kelly popped right up and holding onto to the bar kept herself upright with knees straight. Everyone cheered while Meredith kept stating that she couldn't believe what she was seeing. The pool techs even went and got the one tech that was in the office so she could see it. Everyone kept talking about how much she had progressed since they saw her last. She finished the hour with walking with the water walker ( a rectangle of funoodles that keeps her arms at the water level). We were given a lot of tips that will help us with our home routine. When Meredith got the walker adjusted just right Kelly was initiating and taking steps on her own. She kept saying "that's all you!" It was a great session and I look forward to getting in the water with them on Friday to practice what I learned.
Kelly still struggles with getting the appropriate people to return her calls about school. The frustration is compounded by people asking her all day how school is going. She has called and emailed numerous times and can't seem to get answers. I am thankful for her persistence. She has scheduled one final for Saturday and hopes to finish up the other class in the next week too. I know she's tired at the end of the day but she still pushes through and gets her work done.
Tomorrow we see Dr. Recio and we are anxious to hear what has planned for Kelly. Even more excited to see what he thinks of her progress.
I will keep you all informed. I will ask Kelly to help me attach some photos tomorrow so you can see what we are up to.
Monday, January 9, 2017
I hope I can do this as well as Kelly!
As Kelly has already warned you, I will be trying to write the blog posts for the next couple weeks. We are back in Baltimore and Kelly will have 2 weeks of "boot camp" physical therapy at Kennedy Krieger. We met her PT today, Erin and she is terrific. We have enjoyed meeting and working with different people as they all have different expertise and we learn so much. Kelly will be spending 3 hours a day with Erin (Liza on Tuesdays when Erin is off) and then an hour in the pool a few times a week. In addition, she plans to spend a couple hours in the gym each day riding the STIM bike and using the stander. She also hopes to do some weight training in her afternoon time if she isn't too tired.
Can I tell you how impressed I am with Kelly and the hard work she puts in every day? I know that we are all impressed with her progress but I want you to understand the daily attitude. When a therapist asks Kelly if she would like a break her answer is always "no, let's keep going". When she is told that time is almost up and she can be done for the day she answers "no, let's do some more standing for the last 5 minutes." Erin let Kelly in on a little secret, sometimes it's the PT that needs a break or to be done. Ha Ha, they have their work cut out for them with her.
Today consisted of a thorough assessment that tells the therapist how strong she is and where she has muscle activation and movement. Kel had a lot of spasticity today and this made the assessment a little challenging but Erin seemed very encouraged and surprised at how far she has come since her last assessment with Dennis in August. During the proprioception part of the test (where they bend her big toe up and down and she has to tell which direction it is pointing without looking) I saw this smile come across Kelly's face. She knew that she got them all correct before Erin even told her. She knew because she truly felt it. That look was priceless!
They spent some time talking and making goals for the next couple weeks. Kelly would like to try crawling both in the water and on land. They also talked about working on breaking down the chair and getting it into the car. They plan to do this on a day that the temperatures are a little warmer than today's high of 17 degrees. They also hope to get Kelly standing more independently. These are all great steps towards independence and walking.
The rest of the session was spent standing with minimal assist using the parallel bars. Kelly seemed to bounce right up and hold herself. Erin commented that Kel was making it easy on her and she was barely working at all. After a couple stands of 2-3 minutes each it was time to make things more difficult....Kelly was doing sets of squats. I could see the determination and strength that it took to straighten back up after each squat but again, Kelly wouldn't quit. She kept going until time ran out.
After a healthy lunch (we bring all our food from home so the dieting is easier) we went up to the wellness gym. An hour of sweating it out on the STIM bike wasn't enough for her so she did some weight lifting too. Erin walked by at one point and said "you guys are still here? Maybe I need to work her a little harder the rest of this week." Kelly likes them to feel challenged to wear her out in a day. It hasn't happened yet.
We are staying at the Hackerman-Patz house again and it's nice to know that everything is accessible and we are able to bring our own food and hang out here. Kelly has been struggling to get her schoolwork done. Everything she does requires multiple emails, conversations and extra people being involved in order for her to stay caught up. She has a few exams to take in the next week and she is studying lots and working hard on being prepared for the tests as soon as the professors make them available to her. The online learning is all new to Salus and Kelly sometimes feels that she falls through the cracks. She is so thankful for one professor that has kept up with her progress and tried to help her with anything that she needs.
As you can tell, we have a busy week ahead. I am so thankful for decent weather (cold but decent). We are happy that KKI seems to be serious about making the wheelchair better. Erin seems like a great therapist and Kelly and her hit it off.
I will continue to keep you up to date with daily progress. Please continue to pray for us as we go through this stressful and physically exhausting week. We will be home for the weekend and return again next week for more!
Can I tell you how impressed I am with Kelly and the hard work she puts in every day? I know that we are all impressed with her progress but I want you to understand the daily attitude. When a therapist asks Kelly if she would like a break her answer is always "no, let's keep going". When she is told that time is almost up and she can be done for the day she answers "no, let's do some more standing for the last 5 minutes." Erin let Kelly in on a little secret, sometimes it's the PT that needs a break or to be done. Ha Ha, they have their work cut out for them with her.
Today consisted of a thorough assessment that tells the therapist how strong she is and where she has muscle activation and movement. Kel had a lot of spasticity today and this made the assessment a little challenging but Erin seemed very encouraged and surprised at how far she has come since her last assessment with Dennis in August. During the proprioception part of the test (where they bend her big toe up and down and she has to tell which direction it is pointing without looking) I saw this smile come across Kelly's face. She knew that she got them all correct before Erin even told her. She knew because she truly felt it. That look was priceless!
They spent some time talking and making goals for the next couple weeks. Kelly would like to try crawling both in the water and on land. They also talked about working on breaking down the chair and getting it into the car. They plan to do this on a day that the temperatures are a little warmer than today's high of 17 degrees. They also hope to get Kelly standing more independently. These are all great steps towards independence and walking.
The rest of the session was spent standing with minimal assist using the parallel bars. Kelly seemed to bounce right up and hold herself. Erin commented that Kel was making it easy on her and she was barely working at all. After a couple stands of 2-3 minutes each it was time to make things more difficult....Kelly was doing sets of squats. I could see the determination and strength that it took to straighten back up after each squat but again, Kelly wouldn't quit. She kept going until time ran out.
After a healthy lunch (we bring all our food from home so the dieting is easier) we went up to the wellness gym. An hour of sweating it out on the STIM bike wasn't enough for her so she did some weight lifting too. Erin walked by at one point and said "you guys are still here? Maybe I need to work her a little harder the rest of this week." Kelly likes them to feel challenged to wear her out in a day. It hasn't happened yet.
We are staying at the Hackerman-Patz house again and it's nice to know that everything is accessible and we are able to bring our own food and hang out here. Kelly has been struggling to get her schoolwork done. Everything she does requires multiple emails, conversations and extra people being involved in order for her to stay caught up. She has a few exams to take in the next week and she is studying lots and working hard on being prepared for the tests as soon as the professors make them available to her. The online learning is all new to Salus and Kelly sometimes feels that she falls through the cracks. She is so thankful for one professor that has kept up with her progress and tried to help her with anything that she needs.
As you can tell, we have a busy week ahead. I am so thankful for decent weather (cold but decent). We are happy that KKI seems to be serious about making the wheelchair better. Erin seems like a great therapist and Kelly and her hit it off.
I will continue to keep you up to date with daily progress. Please continue to pray for us as we go through this stressful and physically exhausting week. We will be home for the weekend and return again next week for more!
Sunday, January 8, 2017
January 8
I felt like I should make an update before therapy starts tomorrow. The upcoming two weeks of "bootcamp" will hopefully bring plenty of its own updates! So here's the past week and a half:
1. New Years was spent at FedEx field (unfortunately watching the Redskins lose and end both their season and chance at the playoffs). We were treated like VIPs because of that awful experience at the last game. I received field passes and in order to get onto the field in a wheelchair, you have to take a private elevator (with an escort!!), through the tunnels, past the locker rooms, and onto the field via the tunnel the team enters before the game starts. It was incredible! We were so close to so many of our favorite players! Besides the loss, it was a great way to kick off 2017.
2. I had a wheelchair appointment last week...again. KKI just started working with the vendor I originally got my chair from. They decided to make one last effort to fix the problems I've had with the chair, that way if it's still not perfect, we can at least say everything was tried. They moved the axel forward, so pushing is a lot easier. They also ordered a new seat cover because the one I have is a little too big and catches on the screws, which is starting to cause a little wear and tear and possibly a few holes. They added new front casters (wheels) because the ones I have had something wrong with them...that's a problem I wasn't even aware of, haha. I think the changes they want to make will definitely help, but I don't think it'll resolve the main problem--how big and bulky the chair is. It weighs way more than it should and it's really difficult to break down and load into a car on my own. I guess we'll see how much better it is once the new pieces come in, but I doubt we'll be completely happy with all of it.
3. I had an appointment with "ReWalk" at University of Maryland Baltimore last week. It's the personal exoskeleton I talked about after I went to the expo. The did an evaluation and good news- I'm a candidate and the equipment would fit me! I'm not available during the day that the reps come in, so they're going to try to set up a private date for me to talk to the rep, discuss insurance and finances, and to try out the ReWalk on my own!
4. I met a chiropractor for the first time. Awhile back, I mentioned the chiropractor from Front Royal that was actually one of the fourteen chiropractors in the US to go to Rio with the paralympic team. It was just an initial appointment, so it was mostly information gathering, but I absolutely loved him. He's excited about my case and working with my doctors at KKI in order to coordinate treatment. He seemed really smart and I think I'll learn a lot form him, so I'm really looking forward to seeing what he can do. And the best part? He knows some of the paralympians and says if he gets any of them to come to town, he'll invite me over to meet them!! One in particular is Lex Gillette, a blind track paralympian. I love following him on social media because his motto and saying is "who needs sight when you have a vision."
5. I haven't taken my DMV test yet, but I've been reviewing the information. At this point, it's really just another thing on my to do list that is stressing me out. I'm going to be in Baltimore at least until the weekend and unable to go to the Virginia DMV, so I just feel like it's another thing hanging over my head.
6. Speaking of stressing out, I still have two final exams to take. It's been so much back and forth with school, jumping from one person to another, etc. and I really just want to get it over with. I'm waiting to hear back from a few different people since I sent out some emails this evening, but I was hoping to get both courses completed by next weekend.
Because I know how busy the upcoming weeks are going to be and since I'll be in therapy all day long followed by hours of studying, I think I'm going to let mom type up a few updates to keep every informed on how returning to Kennedy Krieger is going. When I first created my blog, the intent was to let both mom and Dusty write updates because I thought it'd be nice to have a couple different perspectives on this journey, but so far, it has been just me (and I've really been slacking lately!) So stay tuned...
Monday, January 2, 2017
January 1
I have great news to share as we start the new year! (I'm a little behind in the update, but I figured this was a good time to share). I went back to Baltimore on December 28 to see Dr. Pardo, my neuro-immunologist at Hopkins. I haven't seen him since the end of July (so, 5 months ago), and I knew a lot had changed in the time...but I don't think I realized how much! First of all, I wanted to look "cute," so I wore jeggings (for those of you that don't know, they're basically stretchy jeans) and my favorite pair of boots that I wear solely for the look because they're kind of a pain to get on and off. They have a small zipper on the inside that doesn't go all the way up and they're so tall that they come to my knee. So, of course, the first thing the doctor had me do was take them off and put them back on. He wanted to see how well I function, like if my legs are stiff or spasm too much that they interfere with daily tasks like this. Luckily, I didn't show any signs of struggle!
He asked for an update on what has changed, what is good since I saw him and what things I have problems with or any questions I have. Fortunately, I mostly just had good things to report. I told him how much stronger I had gotten and that I have a little more control over my minimal leg movement. I also felt my core had gotten much stronger and my balance has improved. He then asked me to move different things and checked sensation, etc. and told me that within the last five months, my injury level has changed from T4 to...wait for it....T10!! Basically, from upper chest to my hips. He was so excited about it too! While I wish the level were somewhere further down, like to my legs already, that's quite a huge jump in such a short time. As I was leaving, he told me my goal for 2017 was to be able to take steps with the walker instead of just being able to stand for a couple minutes at a time before my knees gave out.
I also saw my urologist, who had even more good news! He prescribes one of my bladder medications to prevent bladder spasms (It is pretty uncommon in SCIs to not have to use a catheter, but I was fortunate enough to have not ever had to. And now I don't even have to "time void" because I have regained sensation). He was so pleased with this that he said he doesn't even really need to see me any more. Maybe once a year, if even, just because he prescribes one of the medications.
It was such a successful trip to Baltimore and the news made me even more excited to return to KKI on the 9th. I'm returning for therapy for two weeks of intense boot camp (monday-friday) to kind of "kick start" things, then I'll transition to long term. Dr. Recio had wanted me to do at least 8-12 weeks, so we'll see how it goes!
He asked for an update on what has changed, what is good since I saw him and what things I have problems with or any questions I have. Fortunately, I mostly just had good things to report. I told him how much stronger I had gotten and that I have a little more control over my minimal leg movement. I also felt my core had gotten much stronger and my balance has improved. He then asked me to move different things and checked sensation, etc. and told me that within the last five months, my injury level has changed from T4 to...wait for it....T10!! Basically, from upper chest to my hips. He was so excited about it too! While I wish the level were somewhere further down, like to my legs already, that's quite a huge jump in such a short time. As I was leaving, he told me my goal for 2017 was to be able to take steps with the walker instead of just being able to stand for a couple minutes at a time before my knees gave out.
I also saw my urologist, who had even more good news! He prescribes one of my bladder medications to prevent bladder spasms (It is pretty uncommon in SCIs to not have to use a catheter, but I was fortunate enough to have not ever had to. And now I don't even have to "time void" because I have regained sensation). He was so pleased with this that he said he doesn't even really need to see me any more. Maybe once a year, if even, just because he prescribes one of the medications.
It was such a successful trip to Baltimore and the news made me even more excited to return to KKI on the 9th. I'm returning for therapy for two weeks of intense boot camp (monday-friday) to kind of "kick start" things, then I'll transition to long term. Dr. Recio had wanted me to do at least 8-12 weeks, so we'll see how it goes!
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