December 29-31

Happy New Year's Eve! I'm so happy to be home for Christmas and New Years...I don't know if I could've handled it if I wasn't. I can't stop thinking about all the people at Magee and praying that they're with loved ones. 

The last few days have been filled with more holiday parties and going to the gym. Being in the therapy pool is one of the best things I could be doing while home, I'm so glad we thought about it! The doctors and therapists think all the nerves and everything are intact, I just need to build enough muscle to make bigger movements and I think the pool exercises are already helping. On Tuesday, I could lay on my back (with a water noodle holding up my head) and kick my legs. The movement was so small that Dusty didn't really believe Mom and me. Movement was already increased by Wednesday when Steph joined mom and me. I was hanging onto their necks and kicking my legs out behind me. I also found it way easier to stand in the water (with one person standing in each foot and a hand keeping my knees straight). I was able to focus on my posture; bringing my hips forward and tucking my abs in). Today, my friend Leslie (who's a PT) joined my parents ant I at the gym and I swear, there's more movement than there was on Tuesday! She asked if I could bring my thighs together and apart...I hadn't tried in the water, but surprised even myself, that I could do it! I spend hours in the pool and then the added bonus is an even hotter shower before going home. Every single day seems to bring something new and it's so rewarding to see my hard work paying off.

Tonight, my roommate and her boyfriend (Annie and Matt) came to Virginia to bring in the New Year with Dusty, me and my family. We made a ton of really good food and enjoyed being together, watching the New Years special on tv.

December 28

I can't get over how nice it is to be home! My family and friends of ours spent the whole afternoon at a vineyard yesterday (of course we had to go to one within the first week I was home! I even made sure to discontinue a few meds before leaving Magee to ensure I could have wine, haha). It was so beautiful outside and sitting on a porch with wine, food and good company is one of my favorite things to do. 

My dad, brother and dusty weren't home this morning, so it was just mom getting me out of bed (a bit of a challenge because the bed is up higher and it was just the two of us). But we did so well! Steph showed up just in time to serve as a second person to make sure I got a shower. I'm sleeping in my parent's master bedroom since it's easiest to get in that doorway in my chair, but it doesn't fit into any of the bathrooms either. The best way to get into the bathroom is by getting on a rolling desk chair and using our hall bathroom. It obviously takes two people since the chair is on wheels and I was so thankful Steph could be there because I feel so disgusting in the mornings from the night sweats (another great component of spinal cord injuries). 

My friend, Shannon, drove from Roanoke to spend the day with me. We didn't really do much, but it was great to relax and catch up. She's the friend whose wedding I was in via FaceTime while at Magee. She brought her wedding photos and it was so funny to see everyone holding up the phone with my face on the screen. My mom swears that Shannon's wedding was a major turning point in my recovery...it was then that I started really taking care of myself more on my own; doing my hair, wearing makeup, and really just looking/feeling more like myself. For that I'll always be thankful..it broke my heart not to be physically standing beside her on her wedding day and I still can't believe how included I felt from so many miles away. Today, Shannon came with lots of goodies- the wedding favors (cute mason jars and homemade soaps), my monogrammed robe from being in the bridal party, and the most thoughtful shadow box. She dried out the bouquet I would've carried and printed out several pictures of me being included in her special day. I was so touched. I can't wait to visit her after much more therapy and go out together- me in my bridesmaid dress and her in her wedding dress.

Steph, Shannon and I had a great day- just like in our D10 apartment at Bridgewater College. 

I'm looking forward to tomorrow because I'm going to my gym for the first time in forever and going to try out the therapy pool! They have a chair and ramp I can use and I've read a lot about how good it is for range of motion and detecting muscle movement in an anti gravity environment (plus it's warm water and I'm going to LOVE it!!) Wish me luck!

December 27

I haven't been on the computer since I got home... There's been a lot of chaos with Christmas and adjusting to being home (but the best kind of chaos!) instead of going back and recounting the 22-26, I'm going to go a little out of order. I just got out of church...being back at church for the first time in over four months was something Dusty really pushed for. It's funny because it was always me pushing for us to attend church. There's just something about being in a place filled with others and worshipping the Lord. Singing and praising in a setting like that never seizes to give me goosebumps and bring tears to my eyes. It's one place that I 100% feel God's presence. But anyways, Dusty knew how much going to church meant to me...listening to sermons online or my Christian contemporary Pandora station just isn't the same. So, this morning, my family and I went to church. There's a lot that has to be done in the mornings for me to get out of the house, but for the first time EVER, mom said we needed to leave the house by 10:00, and all of us were in the car and pulling out of the driveway right at 10:00. 

Last week, Proverbs 3:5-6 appeared in my devotional and I was talking about how Christy Jaye had pointed that verse out to me years ago. It's one part of scripture that I can recite by heart. Today's sermon was on that very verse. Coincidence? I don't think so. 

"Trust in the Lord with all your heart, 

Lean not on your own understanding,

But in all your ways acknowledge Him

And He will make your paths straight"

The sermon was about finding God at the intersection of life and faith. As we get older, it sometimes becomes increasingly difficult to trust people. God not only wants us to trust Him, but to trust Him with all our hearts...a phrase that means to trust with absolutely everything. Do we though? If God asks us to do something, will we?? It's not easy...it never has been to trust completely. And this whole experience has tested me far more than I could've ever imagined. I'm trying to trust God with my whole heart, because I know He's trying to use me for His glory right now and that this experience is not only teaching and growing me, but also those around me. The pastor even said that God may ask us to do things we may not want to do, but the people around us will be blessed...this definitely isn't something I want to do, but I not only pray that others are being blessed, I'm actually witnessing it. We may not know His will, but we are doing it as long as we are trusting and loving Him. 

A couple other things that stuck with me were when the pastor reminded us that Jesus gave everything for us so that we could share His love with others. He prayed for the upcoming year and said that God isn't done with us, but that we should understand that it may take sacrifice...I believe it's taking a lot of sacrifices, but I find comfort in the fact that it is His will. 

One of the songs the band played said "I'm coming back to the heart of worship and it's all about You...I'm sorry Lord for the things I've made it when it's all about you." That's got me thinking...so often we make things about us, especially when praying and talking to God. I think the reason I find going to church and singing those songs so powerful is because it is all about Him in those moments.

I'm so thankful for today and that although Dusty couldn't make it to church, he kept pressing for me to go. I think it was just what I needed. I'm looking forward to many more Sunday mornings at home before weeks filled with intense rehab in Philly...I hope every Sunday leaves me feeling as refreshed and reminded of all God has done for me and that He isn't done with me yet.

December 17-21

What a week!! I've been so busy getting ready to go home that I haven't had any time to update the blog...and people started asking what was wrong or where I was! With the holidays quickly approaching, Magee has gotten pretty busy and many people are trying to get home sooner rather than later. My friends Greg and Lenny both left this week, so I was glad to have many visitors since the dining hall would be much quieter without them. The other day at breakfast, my friend Regina got upset about everyone leaving. She is a middle aged Indonesian woman who is always smiling, but when people started talking about me going home, she said "no Greg, no Lenny, no Kelly...." and started crying. It broke my heart! I thought she was upset because she wasn't going home for Christmas, but she later told my mom that she was sad because all her friends were leaving. I'm looking forward to coming back and visiting though.

That brings me to an update on outpatient rehab--I'll be starting at Magee's outpatient facility on January 6. That means I'll have two weeks at home to figure everything out and work through a new routine. I have lots of exercise programs and am looking forward to using the standing frame that Dusty made. We just found  out that the new insurance doesn't count the day rehab I'll be receiving as my therapy days...basically, I get so many days of outpatient therapy and we're fortunate enough that the time I spend doing Magee's outpatient program won't count as any of those days--that means more therapy for me! I'll start off with at least 3 weeks and then they'll re-evaluate it. When I'm done there, I'll be able to transition to Kennedy-Kreiger in Baltimore for more therapy.

I got to try out the Lokomat this week, which is the robotic treadmill I had talked about. I couldn't try it before because my blood pressure wasn't stable enough to stand statically while the machine was set up (it usually takes about 10 minutes and I wasn't able to stand that long before). The Lokomat was great--I joked that I was dressed up as a storm trooper in honor of the premier of Star Wars, haha.

Saturday and Sunday were filled with family training- lots of transfers! We were relieved that the car transfer was fairly easy and we didn't have much trouble with moving up or down the stairs either.

My last post mentioned how I'd gotten the catheter out and was self cathing every 6 hours. I also said that bladder control is usually the last thing patients with a spinal cord injury get back. Somehow I've had bladder control this week! I only had to cath the first two days and then I was able to go on my own...I can even tell when I need to go sometimes. The nurses and staff are really impressed and can't believe I've gotten that ability back, especially since that function is lowest on the spinal cord. This is even more proof that the leg function and nerves are all there and intact, the muscles just need to become stronger in order to produce larger movements.

I was able to stand in a standing frame during therapy for 20 minutes and then again for 25 minutes yesterday...for once my posture was straight and I was able to lift one hand at a time. This morning, I did my morning routine with Natalie as part of my discharge. This included a shower, dressing, and the rest of getting ready (hair, makeup, etc.). Everything went really well and literally the only thing I need help with is getting my pants on all the way- I'm hoping this will be easier when I'm home with a bigger bed...I'll have way more room than in these little hospital beds.

They re-evaluated some of my arm motility and most motions are 100% recovered! I did the stim bike one last time and learned how to set everything up myself so that I can do it on my own time at the outpatient place. The last thing I did was make one last dish with Tracy--gluten free mac and cheese!

It's sad saying goodbye to everyone, but I'm looking forward to visiting while I'm in outpatient rehab. People I don't even know are coming up to me and saying they heard I was leaving and wishing me luck...and some of my nurses and other staff is crying when they say goodbye. I already know that tomorrow is going to filled with more emotional goodbyes, but I can't wait to be home in less than 24 hours!

December 15 and 16

This week is going by so fast and it has been so great! Tuesday morning started with someone bringing me my yellow ribbon for my wheelchair...whenever someone is getting ready to go home, they put a yellow ribbon on their chair so that everyone knows it. So many people have been coming up to me and asking when I'm leaving or taking the time to wish me luck and say goodbye. The morning also started with getting the indwelling catheter removed. I haven't mentioned it in awhile, but one of the complications with spinal cord injuries is bladder dysfunction. Actually, one of the first things I had problems with was urinary retention (which unfortunately may mean it'll be one of the last things I get back). Anyways, I got the catheter removed and have been self cathing without any problems.

Dusty and I practiced transfers from every surface imaginable- a couch, a recliner, a bed, and his car. It's difficult going from a hard to soft surface or vice versa and also from different heights, but he's really strong and everyone was impressed with how well we did on everything.

I live in a split foyer, so there may be some trouble getting in and out of the house. We will probably just bump up the stairs to get inside, but this requires two people. Dusty was worried about being able to get out of the house just the two of us and asked the therapists to teach him how to do this. He just kept saying that I'd been in the hospital for four months and about all the places and things he wanted us to do. It was sweet how concerned he was and how much he wanted to learn and help with everything. I really shouldn't be surprised because he's been like this the whole time I've been sick, but just the way he's taken initiative and asked all the right questions and really taken control in order to take care of me is amazing. Everyone around here knows who I am, but they also know him. I'm constantly being told how amazing he is and I just feel so lucky to have someone so caring by my side through all this.

Two things I've been terrified of for the past month were wheelies and floor transfers. I'd seen a bunch of guys practice these in the gym and I've been dreading them ever since. It makes sense to practice how you'd get up off the floor if I ever fell or needed help up, but I jokingly just told my therapists that I'd just cry if that ever happened to me. (I really would cry though...I've been tearing up every time anyone even mentions floor transfers!) The floor transfer actually went really well and I had fun doing the wheelies. That doesn't mean I ever want to end up on the floor...and I'm not looking forward to ever having to do a wheelie in order to get over curbs by myself, but I am relieved that neither of them were nearly as bad as I'd thought they'd be.

Dusty and I visited Magee's outpatient rehab, the Riverfront, on Wednesday. They offer something called day rehab that is Monday-Friday, 9:00-3:00. We rode the shuttle there and it was the first time I've been in a vehicle since the 5 hour ambulance ride from UVA to Philadelphia...and that was absolutely miserable on a stretcher. I forgot how much I enjoyed car rides. We were really impressed with the set up of the place and everyone was really friendly. They also have a lot of really nice equipment, including the treadmill I've been using and stim bikes.

Stephanie, my friend from home, came Wednesday night. She got here just in time to see us try out the standing frame again. Dusty hadn't seen it before and wanted to know how to help stand me up in it. He also decided that he was going to go home and build one...he even asked if I'd like it to be pink, haha. It was easier to say goodbye to Dusty since I knew the next time I'd see him was less than a week away and would be at HOME.

December 14

It's my last full week of rehab at Magee! The staff keeps joking about locking me in the basement and not letting me leave. I just keep thinking about how wonderful it's going to be to walk back in here and see everyone again.

Natalie asked me what I wanted to work on this week and I don't even know where to start...I've come so far, but there's still so much to work on. She said we didn't have to get on all 4's or do tall kneel since I did it just the other day, but I thought it'd be good to do it. It's definitely not my favorite thing to do, but getting that much weight through my legs is making a difference...I mean, my leg moved on Friday after doing it! We got into tall kneel and I worked on my posture. I keep sticking my right hip out to the side instead of being completely centered in that position. It's hard to tell if I'm aligned or not since I don't have complete sensation from the hips down. I'm hoping that improves a little more throughout the week. This morning was the first time I was able to manage my legs and get them up onto the mat (with my shoes on- which is way harder!). I then crossed my legs, laid down, and got onto my stomach for some arm strengthening exercises. We've done this many ties, but I usually need some help and it takes about 3x longer than it did this morning. What a way to start a Monday morning!

Two of my "moms" from home came to visit, Amy and Christy. They've driven from Winchester to see me before, but it was even better to have them come together. After lunch, we went upstairs to the roof and just sat there talking since it was so nice out. The sun wasn't even shining because of how many clouds were in the sky and it was still comfortable. We totally lost track of time and before we knew it, the clock said 2:40...10 minutes after I was supposed to be in therapy! As soon as we got inside, I heard "will the patient from room 567 bed 2 report to the 5th floor gym." I'd just made the comment that my nurses are usually looking for me, but I've never been paged over the intercom...well, now I have.

I did the treadmill during my PT session and Steph said that my legs feel different every single time we do it. She said that everything is there- the muscles are working, there just needs to be enough tone and strength to make larger contractions that will eventually produce a larger movement.

Steph and Natalie were at a conference last Thursday and Friday about stim. They said it was like another sign from God that so many of the therapists at the conference were from Kennedy-Krieger. They were learning about how to analyze stim results and even brought up my data and said it looked really good.

I got into the chair that I'm supposed to take home next week. The vendors try to find a chair closest to the one I've been using, but it's never quite as nice and lightweight. The chair was okay...it's a  little higher up and harder to push, but it was comfortable. We have to make a few adjustments to it, but hopefully I'll get back in it soon and be able to get used to it before I go home.

Dusty got here around dinner time. This was the longest we hadn't seen each other, but we made it! The nurses let him stay in my room last night and we pushed the two hospital beds together. There are the little tvs that swing out from the wall and can be moved in front of you in bed. It was so funny to me that we were in hospital beds with those tvs on each side of us with the Monday night football game. How romantic, haha.

I've been relying more of God these past few days and so many of my worries and concerns have been lifted. Proverbs 3:6 is one of my favorite verses and it's so appropriate. Acknowledge Him and he will make your paths straight. I mean, how lucky am I that I haven't hit a single plateau throughout my whole time at Magee? I've had things I've struggled with and I haven't accomplished everything on the first try, but there has been something positive every single day.

I also found it interesting that Proverbs was the verse used today... I vividly remember being at YoungLife camp with Christy (who came to visit today). I was a leader for a middle school group when I was a senior in high school. I remember being at camp and in the leader clubhouse and asking her what her favorite verse was. She said " Proverbs 3:5-6. "Trust in the Lord with all your heart. Lean not on your own understandings. In all your ways acknowledge Him and He will make your paths straight." That verse has really stuck with me ever since then and it made me smile that it was in my devotional on the day she was visiting.

December 12 and 13

I  had therapy both days over the weekend. On Saturday, the focus was mainly on making sure my parents were comfortable with transfers. The therapist also showed us some different exercises and stretches we can do on our own at home. We were supposed to do transfers again on Sunday, but asked the therapist if we could do some more work with my legs since the transfers had gone so well the day before. She stretched out my lower body and accessed my ability to initiate movements like straightening or bending my leg. She said she could definitely feel and see the muscles triggering, so we were excited about that. At the end of the session, two of the therapists helped me to stand. There was someone on each leg and then my dad stood in front in case I needed some help straightening up all the way. I definitely needed more help the first two times we stood, but the third time was the best. They didn't feel like they even helped that much and could really feel my legs kicking in and helping! My dad didn't even help with the last stand. For once, my hips were aligned with my shoulders and my back wasn't arched. I was excited because the last couple times I stood didn't feel that great, I felt like I was relying completely on the people helping and I didn't have very good posture. One of my doctors came in during that last stand and said he could even see my leg muscles working!

We were so thankful for the amazing weather. It's hard to believe it's December with the temperatures in the 60s and 70s! My parents and I spent a lot of time outside, just enjoying each other's company and the sunshine. 

I forgot to mention that Tracy brought me a gluten free bagel on Friday- which was to die for! I can't even remember the last time I had a bagel and they're my favorite! We were surprised that the bagel truck was still there during our outing because we had heard they left at 9am (which is why she stopped and got me one before work). I got mom and I each a bagel and we enjoyed them on Saturday morning. It's the little things, haha. 

The sweetest group of children came through on Saturday and asked if they could sing me Christmas carols. A man who was a patient 32 years ago had brought his wife and her whole class to Magee for caroling. They were so adorable and it took everything I had not to cry (I cry at everything, so holding it in was a big deal for me, haha.) Before they left, they gave me a gingerbread Christmas ornament. I can't wait to get home and put it on our tree. 

I got to meet Greg's daughter, Isabelle, on Saturday afternoon. She was so enthusiastic and seemed so much more mature for her age. I was so impressed with how well she got around on her own. I've heard so much about her from Greg, so it was great to finally meet her. (I mentioned in another post how Greg is my neighbor. His daughter is 11 and she is legally blind). 

I am being taken care of...that's the best feeling. When you trust in God and really cast all your problems or anxiety on Him, a sense of peace is reached. God already knows what I'm thinking before I even ask. I've always said to live by faith, not by sight, but difficult times really put that to the test. I so often want to do things my own way. It's a constant battle trying to surrender and let God take the reigns instead of myself.

I don't like being alone too often. Fortunately, there have been very few instances when I've been by myself throughout this whole journey. However, I am able to have quiet time during the mornings or when I get into bed. It's actually nice to have this built into my schedule. Spending that time reading my devotional, looking up the bible verses and praying has really strengthened my faith and made me into a stronger, more faithful person.