April 28

I've been talking to the woman whose son had the same diagnosis as me. It's been nice talking to someone who knows what we've been going through..and someone who has made it through all of this (her son is back to 100%!) She's given me a lot of hope and is really encouraging. The more I talk to her, the more amazed I am at how we even got connected. But it's crazy...all of Hunter's symptoms were just like mine. No one had heard of anything like what happened to me, yet, this kid in Florida went through almost the same thing. He had the headache, the nausea, the leg weakness, had to teach himself to eat again, etc...and he's back to being a normal, active 13 year old now! 

I did the walking in the harness with a walker today...Dennis helped pull my leg through and Dee stood at hips. I did a lot more than the last time I did it...I was still initiating steps and did better pulling my leg forward. Dennis said I was also really good at keeping the back leg straight and weight shifting. He said he felt a lot of hamstring action and before we even started our session, I sat on the edge of the mat with my legs over the side. He asked me to try to kick my leg out and it moved a little!! Maybe that'll be my next movement? Like I said, this is the time frame that neuro regeneration starts to show (6-8 weeks). Maybe next week will be even better?? 

April 27

I was scared I'd wake up and my toes wouldn't wiggle anymore, but they still did! (And I did it all day long, haha). When I told Dennis, he showed the most excitement I'd seen out of him and immediately took my shoe off, then high fived me. 

My pool session was the best yet... When walking, I was really able to bring my legs forward and didn't need help finishing each step. It went so well that Dennis is hoping to do some walking in the gym tomorrow with me in the harness. He also said that maybe we can try the TheraStride again- the treadmill I've done in the past where they manually move my legs. We had stopped doing that because I didn't have enough tone and was kind of all over the place when they moved my legs..and there was a fear of hyperextending. Now that I have more muscle, tone and can help a little, he thinks it'd be beneficial to try that treadmill since the way they place my legs and "step" me has good cues for walking. There have been a lot of studies on that type of locomotive training, so if it  goes well, it might be better to do that instead of the GEO. 

I got to meet my friend, Marichris, for dinner. She's doing her first rotation in Baltimore and we were finally able to meet up. 

I also finally scheduled a telephone meeting with one of the deans at my school- Friday at 2...say a prayer! I want to ask about the possibility of starting some coursework. Hopefully online and maybe a reduced amount to start with just because it'll make continuing with therapy easier. We'll see how it goes!

April 26

The stim bike went a little better today. I was supposed to have Aqua therapy at 10:30, like I do every Tuesday in the small pool (with the Aqua treadmill). Buuuttt...when I went to get ready, the pool staff informed me that I wasn't scheduled. Apparently, something had gotten messed up with the scheduling. So everyone was frantically trying to find a therapist that was free to get into the pool with me. Eventually, they found a therapist named Meredith to cover my session. We didn't get to be on the Aqua treadmill, but we were able to do a lot of core activities and some standing in the bigger pool. She was impressed with my shoulder and neck posture (which I guess many patients struggle with).  She said she definitely felt activity in the back of my thighs and was excited that we were able to do some standing with just the two of us. She really wanted me to stand, but didn't know if it'd work out since no one else was free to help us. But we tried anyways and she used a strap around my hips and blocked my knees from bending. I was able to pull my hips forward and maintain pretty good alignment. 

I was on the Geo with the spinal stim in the afternoon and I think it looked the best it has ever looked...my knees were actually straightening and my heels were driving down, making for good foot placement. It looked more like walking instead of skating.

It was so beautiful that I was able to go outside for some more practice with wheelchair skills. I went backwards down curbs and then had to push up ramps (which was quite the arm workout!) I then did some more wheelies- learning how to do static wheelies, wheelies while moving and wheelies down ramps. It was fun and I impressed both Dennis and myself with how quickly I picked up on it all.  

The night ended with some excitement...I was sitting in bed, stretching and trying to move my lower body, like always. But something felt different in my left foot...I looked down and realized I WAS moving my three littler toes on the left foot!! I've talked to so many patients that said their leg movement started with just a toe wiggle...a guy named Howard actually just told me that today!! Crazy timing. 

April 25

I'm so determined to make it through this storm. But that doesn't mean I'm not so sick and tired of everything. I got some shorts from Target and needed some of my short socks brought up from the garage, where all the things from my house were put when my family moved me out of my house in Philly. Dad brought up my laundry basket and I realized it had my dirty clothes in it from before I got sick (I guess that's what happens when you leave the men- Dad, James and Dusty to pack up!) Looking through the hamper brought forth a wave of emotions as I saw my dirty gym clothes and clothes I wore to clinic. Both things I wish I could be doing right now. I guess this is just teaching me to never complain about those things again. I'll find joy in going to work and look forward to the gym in the future! 

Mrs. Lenny sent me this quote from Christopher Reeve: “So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable.” I feel like I'm going through that transition now. So many things seem impossible at first, but when I set my mind to it, I surprise even myself in what I'm capable of. 

I've been thinking about my grandfather a lot lately...he was always my biggest fan. He took me to every dance class and every orthodontist appointment I ever had. He'd do anything for me. There have been so many things that have reminded me of him lately and the other day, I actually went to call him before I remembered he's been gone for more than two years now. Driving home from Baltimore last week, Mom randomly said she'd been thinking about him as well and what a hard time he'd have seeing me sick and struggling like I have been. It's true, but I also think I'd be making him proud. 

April 24

Today's sermon had my name written all over it. Pastor John was talking about the difference between regular sunglasses and polarized glasses. You can go your whole life with regular sunglasses and not know what you're missing, but the moment you try on a pair of polarized sunglasses, you can see so much better. (Seriously, you gotta try it!) You can see things that were there all along, you just didn't know because you weren't seeing as clearly. 

"The lamp of the body is the eye." Luke 11:34. If we see the goodness, we'll be filled with light. I've had so many people ask me how I can be so positive or comment on how big my smile is, but I don't really see another option. Of course I have my moments, but focusing on the positive is way better than being negative and letting the darkness consume me. "He who began a good work in you will carry it out to completion." My story is far from over. I feel like I'm not back to 100% yet because there's something more to come. That's hard to handle, but there's just got to be something more to come. Like this "chapter" of my story isn't over yet. I wish it were, but my only hope is that what is to come is so great that it's worth all this. 

Psalm 23:6 says God's goodness follows us all the time...no matter what we're feeling or what we're going through. That goodness is still there. 

We were all asked to write down something good God has done then bring that paper to the front. I think they're going to read some of those papers next week. I wrote about how sick I was and how God used that as an opportunity for me to strengthen the relationships I have, build new ones, and be an example of His love and goodness.im looking forward to hearing what other people wrote down next Sunday. 

We made a GoFundMe page, like people requested. 

https://www.gofundme.com/2474bup8

My friend, Christin, shared it to a group we belong to- ODs on Facebook. A woman from Florida whose husband is an optometrist and part of that page sent me a message after hearing about that post. Her 11 year old son, Hunter, had ADEM. It's so rare and I've obviously never met anyone else with it, so I messaged her. We talked for a little bit and she shared photos of her son who is now back on his feet without an assisted devices. It was inspiring and helped keep my hopes up. I told her I hoped to be back on my feet like that again and she simply replied with "you will." She also said "God has a purpose for you too, Kelly. Sounds strange to say but you will come out of this stronger than ever. Keep fighting hard. Never give up. Have your tears but then dry them and keep going. I can already feel that you are going to make it through this storm!"

I don't think I got connected to her by accident. I think those were words I needed to hear and God was showing me that I just need to remain faithful. 

April 23

Guess what? The other tire blew this morning! Thank goodness it just happened while I was in the house...imagine if it had happened at church or somewhere public. Not just because it doesn't move well when flat, but the noise is awful! I'm currently recovering from another mini heart attack and sitting in the parking lot of Element Sports while Dusty gets the tire fixed. I said yesterday how great this business was, but I'll say it again. The man took care of this tire for free because he felt bad...I'm pretty sure this was the other tire and they both blew because of how they were put on by the wheelchair company, but the man at the bike shop said he wanted to fix it since he couldn't be 100% sure it wasn't his fault. 

For the first time in awhile, I slept in a little. I got ready, enjoyed breakfast and my coffee, then helped Mom make deviled eggs for a party this evening (Dusty's sister is in town for a few days from Colorado). While I was helping, I used my new small stim unit on my abs. It helped me sit up a little straighter and contracted those muscles to help them get stronger. 

I also did my nails for the first time I awhile- I finally found some of my jamberry nail stickers! We'll see how long they last. I was getting ready to leave the house when the tire blew, so that's delaying our plans a little, but we're supposed to go to a friend's birthday party for their kids. It's mostly just fun to see everyone, but hopefully we'll still meet up with everyone tonight at Kasey's welcome home party since this tire is changing our plans a little. 

April 22

When it rains, it pours. James rear ended someone in my car yesterday...listening to Mom talk to him on the phone, I thought it was totaled and I started crying, thinking I was never going to get into my car ever again. Who knew I'd have such an attachment to my 2007 Hyundai? Luckily, he was perfectly fine and the car isn't in too bad of shape. 

Then today, I finally had time to get a haircut. I haven't had one since I first got to Magee. Someone came to my room and cut like 7 inches off for me...my hair was so nice and long! But I couldn't really brush my own hair at first and the male nurses had a hard time managing it and trying to keep it from being caught under me when I'd lay in bed. It really wasn't a good hair cut and wasn't quite even, but it was better than nothing. Then my thyroid levels were so out of control that I lost half the thickness of my hair. So it's been a mess to say the least. Anyways, I was sitting getting my hair cut this morning when this loud noise rang through the air...it sounded like a gun shot! Everyone in the shop stopped what they were doing and looked around, trying to figure out what it was. IT WAS MY WHEELCHAIR TIRE! It just blew! My heart raced for the next ten minutes, it was so scary! We had no idea what to do. I went ahead and transferred to a different chair, finished my haircut, then looked up bike repair shops nearby. We ended up going to Element Sports (if you're in Winchester, I highly recommend going there- the guy was so great!!) He fixed my tire right away. He said the hospital fixes tires like that for $60 some dollars and he only charged $18!! He even checked the air in the other tire.  Then to top off our good impression of the place, there was even Christian music playing. Crisis averted, thank God! 

April 21

I made sure I got to the wellness center early once again to do an hour on the stim bike. Dennis told me today that I can  use the arm bike after or before the bike to get a good cardio work out. I didn't realize it, but he said an arm workout would raise my blood pressure and result in a good overall cardio workout along with my biking. I was already trying to get the most out of my workouts by lifting weights while biking (the only downside is how sore my arms have been because I'm pushing myself a lot more since my new chair is lighter and I'm able to do so much more!) 

I was able to do the spinal cord stim and the EMG at the same time during therapy. It went even better than the first time I did it because the thresholds didn't have to be set quite as high. So I must have more strength than just a week or two ago! 

I did a few independent transfers today and was feeling pretty proud of myself, haha. It's just the confidence I needed. I'm just reminding myself that things like this will only get easier. When I was at Magee, I volunteered to help with one of the land for PT students and they asked me what advice if give other patients. I talked about trying not to be discouraged when you do something for the first time. The first time is always the worst and it only gets better from there. That's what I wish people had told me. Feeding myself? That was the hardest thing for me to learn! I was so frustrated and I'd concentrate so hard that I'd forget to keep breathing and then I'd hyperventilate, almost causing myself to pass out. How ridiculous, right? But it didn't take long for it to get better. That's the mindset I need to be in. It's not easy, but one day I'll look back on things like this and it'll seem like nothing. 

April 20

Today's pool session was so great...I rode the bike for an hour this morning and then again for 30 minutes before getting in the water. The last few weeks, the therapists that have worked with me in the water have been impressed with how much I was doing- like initiating steps and almost bringing my foot all the way forward with each step (my toes would just get stuck sometimes and prevent a full step). Today, Dennis had me kind of march in place. He stood in front of me and prevented my knee from bending and someone supported my hips while I picked each leg up and down. The pool therapists have been saying things like "good step!" And "I could tell you were helping with that," but I couldn't really tell a difference before. I was constantly trying to help, but wasn't sure how much or the difference between a "good step" and "bad step," of even if I was doing anything at all. But yesterday, I could tell how much clearance I was getting by picking my foot up and down in front of me. And I wasn't twisting my hips or throwing my body backwards to compensate. It happens a lot that therapists or family/friends say how much I'm doing or give me positive feedback, but I don't believe it until I have a moment like that. I need to really see it for myself to believe it. I don't like to get my hopes up because nothing is worse than being disappointed, especially when it's this important. We also did some walking then side steps and I was really happy to be able to notice how much work I was doing. I think I needed that as a confidence boost! 

April 19

Okay, so I may have had a major break down last night...I handle things pretty well for the most part, but every now and then I just can't hold it in anymore. This is the part of my life I was waiting for...to be done with the course work for school, on rotations, closer to home and the people I've been away from all these years, and part one of boards behind me. I was in shape, healthy, and happy with the way I looked and the way I felt. I had it all. And before I knew it, everything was ripped away. I feel like a rug was pulled out from under me and I fell face first into the ground and I'm still struggling to get back up. I think about all that and then start feeling even worse because I've met so many people that are worse off than me. Why can't I just be thankful for what I have? Why can't I just suppress these thoughts of "what could've been"? I just feel like everyone around me is moving forward and I'm somehow taking steps backwards. I know when I step back to look at the big picture, I'm getting better and am improving, but sometimes it's just too slow to really recognize. Instead of just being thankful for the people I have in my life, I'm feeling guilty for taking up everyone's time and driving my parents into debt. I was supposed to be almost done my doctorate so I could help my parents out, not the other way around. 

But, like we always say, I've got to get out of the pity pool. I don't know if it's possible, but I'll just keep working harder.  I'm starting to get things set up with school and have been looking through notes. Maybe that'll make me feel more like my old self and help distract me and give me something more substantial to think about. 

On a more positive note, many people have already reached out with really great fundraising ideas...the only problem is that Mom and I don't personally have the time to organize an event because we're on the road and in Baltimore four days a week. So many people have suggested a GoFundMe page, so we're creating one...I just like the idea of fundraising and doing some sort of event instead of asking for money. It's hard to ask for help like that. 

Last night, Dusty told me that he knew all of this sucked, but to "gear up mentally for a long fight, but a fight we're ultimately going to win." He told me that I was allowed to be sad, but that I needed to turn it into motivation to work harder the next day. Of course I was bitter and told him I couldn't possibly work harder than I already am, but I started the day with that in mind. 

I tried to do my own transfers today and was actually pretty successful for the most part. And the strangest thing happen...Mom went to transfer me and I wasn't really positioned well and I didn't have good hand placement to push off of anything, but the transfer was so good...I really think I engaged my legs and kind of stood up. Mom and she didn't really even do anything, so it was me doing the work. It's crazy, but sometimes my legs just kind of kick in...I mean, I'm constantly trying to move them, but they actually do what they're supposed to sometimes! 

Dennis and I worked on wheelchair skills today and he was really impressed. Unlike most people, he said I wasn't afraid to do wheelies and lean back far enough. I know- me not afraid? It's so unlike me! But we did wheelies, ramps, and going down curbs and I actually enjoyed myself. Hopefully this will be another one of those things I get good at and then never have to use again. 

April 18

I'm excited for a new week and all that is to come. What makes it even better is this great weather forecast. I love this time of year...everything is turning green and the flowers are blooming. I've always appreciated that beauty, but never really took the time to be still and enjoy it. I'm taking that time now and I highly recommend it.

One of my favorite things is the short time that the lilacs are in bloom. We have a small lilac bush on the side of the house and Mom has been going out and cutting me off a little bit so I can enjoy it. It's so beautiful and I love the scent of fresh lilac!

On a completely different note, a lot of our downtime is spent answering phone calls, going through mail, and sorting through bills. It's overwhelming and I'm not even the one sorting through it. I just watch Mom and Dad sit down with stacks and stacks of papers...I'm talking like one sheet for each chest X-ray, each finger prick that checked my blood sugar ($8.95 each time, almost every HOUR I was in the ICU), not to mention each MRI and a separate bill from my numerous doctor visits around the clock. We're so thankful for the support we've received from church, friends and the community this far, but I know there's still a long road ahead. Some people have encouraged us to start a Facebook page and to do some fundraising to help offset the cost of traveling and Mom not working. We don't even know where to start though...and Mom and I personally don't have much time because we're back and forth to Baltimore. If anyone has suggestions or guidance about fundraising or wants to help, please reach out...I don't even know where to start. 

April 17

My verse of the day from my You Version Bible app was James 1:12...

I keep saying how I just want to fast forward...I want to see the other side of these trials. I want to see more of God's goodness and what He will make out of these tough times. I can't wait for more moments when I can say "this is why I went through that..." I know I've already kind of said that in regards to the people I've met along the way, but I just have this feeling that there's something more to come. 

April 15

I HAVE MY NEW WHEELCHAIR!! We headed to Philly as soon as therapy was over yesterday. It's a strange feeling being back... Neither Dusty nor I are big on cities, so we always talked about how much we hated Philly. I think being in the hospital and separated for so long didn't help much, but the combination of the relationships I made, how much stronger I got while at Magee, and my drive and desire to get back to school may have changed my perception.

I actually got excited and felt this sense of being home when that skyline came into view. The welcome I got when I checked in at the Sheraton only intensified that feeling. I got free breakfast buffet, along with my mushroom and egg white omelet that they remembered I liked. And on my way out, the girl at the coffee counter had a large coffee with steamed milk ready for me. Who would've guessed I kind of missed living at a hotel? 

The welcome I got at Magee was just as great...I saw doctors, therapists, the kitchen staff, nurses, custodians and of course, Herb. I in no way wish I were back in that hospital, but being close enough to visit more often wouldn't be so bad. Mom and I were saying that all it'll take is a trip back when I'm having a bad day to put things back into perspective. I got to meet a few new patients (even a guy about my age who is now in the same room I was in...we bonded over how uncomfortable that bed is! Haha). I look forward to being able to go back and meet new patients, hear their stories and hopefully encourage them with my story.

My new chair is so much lighter! It's smaller and much easier to push...and do wheelies! I even took it outside and practiced going up the ramp outside Magee...pushing up the incline wasn't even that bad. Dennis is going to make me work on my wheelchair skills this upcoming week- wheelies, curbs, ramps, etc. I know it'll be challenging, but hopefully it'll also be fun and not scary...I was scared to death the first time I did a wheelie! Matter of fact, I would have a mini heart attack anytime Dusty would come up behind me and tip me backwards. And he'd do it just to get a reaction out of me! 

While Mom checked out of the hotel, I did some more visiting and then found myself in front of my favorite sunny window. I looked out at the people hurrying down the sidewalks and the cars  filling the streets, everyone lost in their own world. And I was thinking about all those days I sat in that same place, longing to be outside amongst all those people. Sitting there, watching everyone below, made me temporarily forget about all I was going through. I'd get lost in watching the chaos of the city and forget that I wasn't able to join. I sat there thinking about the first time I was able to break free of the walls of a hospital.. Months of being in the ICU or at Magee, being able to watch everything from the window, but not able to join...I felt trapped. I was happy to be able to enjoy that view and the warmth of the sun while still being comforted by the fact that I'd be able to leave as soon as Mom was ready.

April 13

The only scheduled therapy I have on Wednesdays is pool therapy and it isn't until the afternoon, so it was a good change to be able to take my time getting up and ready in the morning (and enjoy my coffee!) 

Today was one of the first mornings I felt like I was actually looking like myself. (I think being able to pull up to the sink and mirror in the bathroom to get myself ready helped). The acne on my face is finally getting better (those steroids did a number on my skin!) and I'm really trying to lose weight, so it's starting to show in my face. I also noticed in the shower that my hair is starting to feel thicker, so I think everything is coming along!

While on the stim bike this morning, I met a girl that had ADEM. She's 20 and has been coming to KKI for 3 years. In all that time, she's never met another person with ADEM (and I definitely hadn't either.) That goes to show how rare this thing is!

I ended the day with Dennis and Lizzie in the big pool. I used the water walker and we did laps the whole time. They were both still pretty impressed with how I was able to pull my leg through with each step. I have s little easier time with the right leg, but I'm hoping all of it just continues to get better and easier. 

April 12

I have a feeling this week might be even better than last week! My stim bike performance this morning was the best yet! Instead of averaging 8miles in an hour, I did 11.3! I still didn't require much stim and my power was 3.2! (It's slowly increasing!) 

I was with Rachel in the smaller pool with the treadmill in the morning. Dennis thought it made a difference having me do the bike right before the pool last week, so that's what I did to try to "wake them up." We did some standing balance, which is getting better, then walking. Rachel could tell a big difference from just last week! 

I did some arm exercises while I'm the standing frame in the afternoon then got on the GEO with the Vectra (spinal stim). It went well!! And while I was walking, a few people from Restorative Therapies (the company that makes the stim bikes) came through on a tour. I got to tell them my story and how much I love using the stim bike...and how much I think it has helped strengthen my legs. I didn't even realize they were from the company until I was done talking. 

Tuesday's are definitely the most exhausting day of the week as far as therapy goes, so it was nice to go back to the room and watch a movie with Mom at the end of the day. 

April 11

I had another great weekend, but was still ready to get back to therapy (especially with how exciting things ended last week!) Dusty and I got to have not just one, but two date nights. We even went bowling! It took a game for me to get warmed up, but I almost beat him the second game! It just took a little adjusting since we didn't use the bumpers, haha. We were there with a lot of his family and some of our friends, so it was a lot of fun. (And who doesn't like cosmic bowling??)

Church was really great this week. The music was good and the sermon was great. And I love seeing Stephanie on Sunday's! She's really busy with school and work during the week, so we usually only get to catch up at church. But this Sunday was extra special because Steph went with me to Maureen's religious education class to meet the kids that have written me cards and been praying for me. They were so sweet! Maureen started the class by letting them ask me questions. I think they felt a little shy at first, but here are the few questions I got:

Are you feeling better since when we first started praying for you? (Definitely!! Hard to do much worse, right? The power of prayer is amazing!)

How long are you going to be in your wheelchair? (Such an innocent question...the truth is that we don't know, but I'm doing better each day and the prayers have been helping!)

Is it hard to get dressed? (I actually laughed at this one...it's harder than you can imagine! I'd be embarrassed to admit how long it takes me, but I do it and it's slowly getting better)

The room they put us in this week in Baltimore is the best yet. It's one of the larger rooms, but they were nice enough to give it to us at the same price as the other rooms. It's perfect because the floors are hard wood (aka way easier for me to move around) and it's handicap accessible...the table is high enough for me to pull up to and even the sink has a cut out so I can pull up to it. I love being home, but it's nice staying in a place like this because I can do pretty much everything on my own. And as soon as my new transfer board comes in, I really will be able to! (It's the transfer board with the disc that I put under me and then I can go from one place to the next completely on my own).

Therapy went well today...I got to Baltimore in time for an hour on the stim bike. My first hour with Dennis was spent doing some core and ab exercises. He then did that PNF stretching that Becky used to do. The second hour was with the Vectra (spinal stim). We did a lot of standing and then I was about to kick my legs out and even hold them out for 15+ seconds! The first time I used the Vectra, we were excited about a small toe twitch, so this was a big improvement!

April 10

The unanchored soul will drift. That's still the theme of this sermon series. When this happens, we may not only feel unanchored, but even shipwrecked. "It's not until you get through whatever circumstances you're going through that you realize God was doing you a favor." That was an interesting point from this morning's sermon. It's hard to see the blessings when you're going through a hard time. Like they say "when one door closes, another door opens." I've learned that what I think is best isn't always right.  I love the quote "we plan and God laughs." Who am I to think my plan would be better than His? After all, His plan is already written. When God's goodness is least visible, it's functioning at its highest and best on our behalf. We just might not realize it until we get the chance to look back on it. 

Hope starts when we stop wondering and start watching for His goodness in our life...it's not questioning if things are going to work out, but knowing they will. Another one of my favorite verses was referenced this morning: Jeremiah 29:11. "For I know the plans I have for you, declares the Lord. Plans to prosper you and not to harm you. Plans to give you hope and a future." I thought about that verse almost everyday I was in the hospital. People kept asking how I was handling things so well. That's how. I knew it would get better. I tried to focus on the blessings- no matter how small they were. I definitely had my moments, my break downs, my fair share of tears, but I tried to "get out of the pity pool before I shriveled up." 

God's goodness always outweighs the bad. Don't make the bad the story. This is just a chapter because we know God's goodness will prevail. I knew and still know that whatever I'm going through isn't the whole story, it's just a chapter. We typically see what we're looking for...if we aren't looking for any of the positives, we won't see them. Don't elevate the problem over the promise. 

Focus on where you want to go, not where you are or where you've been- towards the victory and not your failure. Without hope, our minds will search for reasons to not have hope. But with hope, our minds will search for reasons to have hope. You get back what you put out. With hope, you'll be opportunity minded. How do you wake up? Even in the midst of trouble and difficulties, do you keep hope? Stop wondering if God is working on your behalf and know that He is- look for what He's doing. That's my advice. Everyone thought I needed to meet with a psychologist the whole time I was in the hospital. That I needed to talk to someone. That something must be wrong. How could I be happy? I had hope. I believed. I didn't let my circumstances define me. And I'm still not. This isn't the way things are going to stay. This is only a chapter of my story and I have this hope as an anchor to the soul. Firm and secure. 

April 7

The weather was gloomy, gray and wet, but that meant Dad didn't have to work and was able to come with us. Despite the gross weather, it was a beautifully happy day! My doctors warned me that not every day would be filled with improvement and good news. Some days may feel like I'm taking steps backwards, but as long as I take a step back and see that the overall trend is a steady incline, that's all that matters.

I rode the stim bike again in the morning because I had worked up to 4x/week.it wasn't quite as good as the day before, but I was still happy with the results. It was also time for my 30 day reevaluation to see what/if anything had changed since I started at KKI.  I knew there had been improvement, but I had no idea how much. I improved my balance and functional reach in all directions...my reach forward (reaching forward then coming back to neutral with both arms still in the air and not touching anything) improved from a pathetic 6cm to 12cm. Still not ideal, but I doubled it! (All those sit ups Dennis makes me do are paying off!)

We did a full assessment of proprioception and movement as well. Proprioception was checked based on if I could tell whether or not my knee, ankle and big toe were pointed up or down (bent or not). That's still not perfect, but it was better than before. I was pretty much guessing the first time I did it, but I felt a lot more confident in my answers this time and instead of getting the majority wrong, I got 4/5 correct. 

During the first assessment, there was absolutely no visible movement, but Becky could feel triggers/traces everywhere. This time, I had actual movement in my hip flexors, glutes, thighs, ankles and toes! There are even videos for proof! It was so exciting!! 

There's another setting on the stim machine (aka the Vectra) called EMG. I found this online to describe it because I know it's a better explanation than what I can give: 

Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons).

Motor neurons transmit electrical signals that cause muscles to contract. An EMG translates these signals into graphs, sounds or numerical values that a specialist interprets.

An EMG uses tiny devices called electrodes to transmit or detect electrical signals.

A nerve conduction study, another part of an EMG, uses electrodes taped to the skin (surface electrodes) to measure the speed and strength of signals traveling between two or more points.

EMG results can reveal nerve dysfunction, muscle dysfunction or problems with nerve-to-muscle signal transmission.

So...I had the stim electrode pads on my legs, which were hooked to the machine. Dennis set a specific threshold on the machine and told me to try to create a movement...like bring my knee to my chest or heel to butt. Once enough movement was detected to reach whatever threshold was set, stim would kick on and finish the movement. It was so cool! And the majority of the time, I was reaching the threshold fairly quickly and we kept having to raise it. I keep watching the videos (with and without stim) because I'm just so excited about all this progress. This is how everything started with my arms...we started with a little movement and then just built it from there. I'm so excited for what's to come next week and how much strength I'm going to build up over time. Dennis already extended my time at KKI so my tentative discharge date is 6/9, but he said we can keep adding time as things progress. Actually, his exact words were "we'll continue with what we're doing like it's all going to come back." (!!!)

April 6

Praise the Lord- things are looking up!! I'm so excited that I have great news to report. Today was such a great day that I guess I should just start from the beginning...

I got to the wellness center early to ride the stim bike. I always attach all the electrodes and wires, then manually move my legs a cycle or two to make sure I'm close enough to the bike before I put the brakes on. Mom moved my legs a couple cycles and then I kept that motion going for another cycle- completely on my own! The machine wasn't even turned on yet. I rode the bike for an hour and my average power was 2.8W (it has only been about 1.5!)...so almost double what it's been!

While I was biking, I met a woman in her late 60s/early 70s. She was using the bike next to me for her arms. It's always interesting to hear other people's stories, so I like to share. She flipped over the handlebars of her bike about a year ago and had some sort of spinal cord stroke. She struggles, but is able to walk with a walker. She was telling me how her husband should be retiring soon, but they've unfortunately already used most of their retirement money due to her injury. Everyday I meet people whose whole life is turned upside down from a spinal cord injury or stroke and it's so upsetting. I don't think I ever really heard that term before this past year...and I'm in the medical field!

Speaking of people I've met, a man named Steven came up to me at lunch and we started talking. It's funny how common it is for everyone to talk to each other here and how normal it is to open with the line of "so how long have you been coming here?" Or "did you have an accident?" Or "how long have you been in that chair?" Steven just started opening up to me and said how it's almost his "3 year wreck-iversary." He was in a motorcycle accident in Guatemala. He had all kinds of stories about how he loved to travel and how his wheelchair wasn't holding him back from anything. He still sails, snorkels, and even scuba dives. He had spent a long time in the hospital after his accident and was even in a coma for about four weeks. He recalled the first time he was able to go outside the walls of the hospital and how he just wanted ice cream. He got two ice cream cones- one for each hand- and sat under the shade of a big tree on a sunny day. A quadriplegic man in an automatic wheelchair that was operated and moved by a straw (you sip or blow with your mouth in order to go forwards, backwards, or side to side) came up to him and talked about how happy he was. The man couldn't use his hands and he was that happy? He told Steven about how the doctors had just discovered some type of device that was going to help his diaphragm so he could breathe on his own (he'd been on the ventilator for 15 years....15 years!) Steven said after talking to that man, he vowed to never feel sorry for himself again. I thought that was a pretty powerful story. 

I ended the day in the pool. There's a small pool (with the treadmill) and a big pool. I was in the bigger one this time...the perks of the bigger one is that it's about 5 degrees warmer, bringing it to an incredibly wonderful 95 degrees, haha. They have a "water walker" that I get to use when in the big pool. It's basically a rectangle of those pool noodles with two handles that I put around me. One therapist stays behind me at the hips and one stays in front, helping with my feet. We ended up doing laps with the walker the whole time because it was going so well! Lizzie and Dennis kept looking at each other, asking "did you do that?" Nope- it was me bringing my legs forward with each step! They were both really impressed and Dennis said I need to use the stim bike right before the pool every Wednesday to wake my legs up like that!

The good news didn't stop there...we got a phone call from a nurse at our insurance saying I was approved for the stim bike...I'm going to have my own! Everyone had warned us that it always gets denied the first time and takes about 6 months to get approval- if you even get approved. It took us 4 weeks and got approved the first time! I think some of that can be attributed to my mom's persistence and hard work though, so I'm really fortunate. 

Things are definitely looking up!

April 5

I started the day on the stim bike again. My average power was 0.3 W higher than yesterday alone- I know it's small, but any improvement is good! (Gotta get excited about the little things, right?) 

I was on the aqua treadmill with Rachel this morning (like every Tuesday for now) and she saw a difference from last week. She commented on how she could tell I was initiating each step and instead of needing someone on each of my legs, she was able to do it on her own. Rachel blocked my knees and someone held my hips in place while I stood. Our initial goal was the try to stand with no hands for five seconds, then ten, then fifteen. I ended up doing 26 seconds (much better than 5!)

I did the GEO again today, but this time the stim was on. I carried more of my body weight (the harness supporting less) and Dennis could feel a lot of activation in my legs. There's a passive mode on the GEO that pretty much does everything for me and then an active assist mode that finishes out each step that I initiate. Dee, the aide that always helps us and gets excited about everything I do, turned off both modes without me knowing and I took a step completely on my own...MY FIRST UNASSISTED STEP! So that's what Dennis meant when he said it was going to be an exciting week? (And it's only Tuesday!)

An update on the relationships I'm forming and people I'm meeting:

I met a little girl today named Eden. She's 5 and here for two weeks with her parents from California. Her mom was telling me that on Dec 6, Eden did a back bend in their living room and ended up paralyzed from the waist down. They don't really know what happened, but it sounds like a complete injury. She's the sweetest little girl and it just broke my heart. I know how much I've struggled and I'm 24 with what doctors believe will be a full recovery..she's 5 and likely not going to gain full function of her legs again. It really puts things into perspective. 

April 4

We headed back to Baltimore this morning in time to get on the stim bike before lunch. I had been excited that the stim no longer shot straight up to 100% like it used to...it was only taking about 80% stim to get to the target speed. This morning, it only took 10% stim to get to the target speed! Then, as my muscles got more tired, it slowly took more stim. We want to maximize the amount of stim used, just because we can, so Dennis has to adjust the settings. It's good that I wasn't requiring as much help from the stim, but adjusting the settings will make sure I'm using all the stim I can, which helps build up muscle from forced contractions. 

Dennis signed me up for the GEO multiple times a week- usually at least once without stim and once with. Today, I did it without. We used the spinal cord stim for some standing afterwards and my legs were jumping like crazy! I had movement in my quads, glutes, and ankles. I tried squeezing my quads and straightening my legs then bending and you could actually see my quads tighten and kneecaps move up and down as I tried to do each movement. The first time I had the spinal stim on, we were excited about slight movement in my big toe and now we got this! So things are definitely improving. I also told Dennis that I've noticed more tone recently and I've been able to initiate spasms...like sometimes I can try wiggling my ankles and it'll cause them to jump and spasm. He said that's a good sign and it's usually the next step before voluntary motion...it means the signal is getting there, it's just a little confused. Dennis said "this might be an exciting week" after our session today and I hope he's right!

April 3

The new sermon series is called "anchored." The main verse that comes to mind when I hear that word is one I posted just last week- "we have this hope as an anchor, firm and secure." Hebrews 6:19. Hope has become my favorite word. It's the chosen word for KKI and now the chosen word for my life. 

In the sermon, the pastor defined hope as an expectation of good. Psalm 25:7 declares that the Lord is good, Psalm 23:6 says goodness follows God, and Matthew 7:11 says the Lord gives good gifts. We can choose hope in every circumstance. We often allow the circumstances to distract us from the goodness of God. It's so easy to let our circumstances consume us.

If we aren't anchored in hope, we allow ourselves to drift. The pastor asked if we will allow the circumstances to let us drift or will we remain anchored in the goodness of God? Like we can't do both. Next time I start to let my circumstances take over and dictate how I feel, I need to remind myself that isn't putting my hope in God; not putting my "expectations" in God and believing He is going to pull me through whatever is going on.