December 10

My brother, his girlfriend (Jessica), and his girlfriend's sister (Emily) all came to visit today. I haven't seen Jessica since I got sick because she left for Spain to study abroad right before everything happened. Jessica was so sweet and brought me several presents back from her trip-- Belgian chocolate, the most adorable elephant figurine from Spain, a corkscrew magnet, and a coffee mug filled with hot cocoa mix.

It was such a great day. I started the morning with the stim bike and that went pretty well. It's one of my favorite things I do in therapy, so I'm crossing my fingers that we'll be able to get a hold of one for the house or at least have access to one when I go home.

We made ornaments for the Christmas tree in the gym during OT and did some more work with transfers. The rest of the day was spent exploring Magee and me beating everyone in Phase 10, haha. Mom sent the best lunch-- leftover steak and shrimp and then treated us to Thai food for dinner. Thank goodness I don't have to deal with all those diet restrictions like in the beginning of my rehab when I still had the trach and everything.

My aunt and grandma sent gluten free sugar cookies, icing, and sprinkles so that we could spend some time decorating cookies. We didn't make too many pretty cookies, but we put them all on a tray and James pushed me around the cafeteria and around the 5th floor so I could ask everyone if they wanted one. I loved seeing everyone get excited about which cookie they were going to pick out...it was like spreading a little holiday cheer :)

My world definitely feels unsteady and the troubles have 100% made me more dependent on God and  aware of His presence. It's a strange thought to consider it joyful when you face trouble, but when the end result is a closer relationship with the One who created us, who could be that upset? Of course anyone would yearn for a problem-free life, but I don't think I'd be as aware of God's presence, constantly remembering to thank Him for all I have. It's easier to reach out and ask for help. I don't think God necessarily causes us to face hardships, but rather, He uses those situations as an opportunity to reveal His goodness and create something positive. This has happened repetitively throughout this whole journey and it's hard to be down when I look back and think about how much good has occurred over the past three months.

December 9

God is doing some amazing things! I shouldn't be surprised when it happens, but I'm still amazed at all the good God brings into the darkest situations. Like, my parents refinanced our house the day I was intubated...someone came to the hospital and they signed the papers on that day and then didn't have a mortgage payment. Talk about perfect timing.

So, yesterday, I was saying how overwhelming it is to not really know what the next step is going to be as far as recovery and rehab. I was even praying, telling God my "deepest desires" like my devotional had said. I just wanted a sign as to which rehab facility to look at, if I should stay in Philly or find a place near home, etc. Mom was researching stim bikes and if it was possible to rent, lease, or buy one since I've had such a good response to the one here at Magee. While looking into this, she came across a rehab place in Baltimore (which would only be about an hour and a half drive from home instead of 3, like Philly). The place is called Kennedy-Krieger and they have all the equipment I've been using- like the stim bikes, treadmill, elliptical/glider, plus even more. (They even have an aquatic treadmill...I have no idea what that is, but it sounds pretty great, haha). So, Mom called me last night and told me about this place an how she sent them an email asking for more information. She called me this afternoon and said that a nurse from the facility had contacted her and seemed really excited about me and the progress I've made so far. They think that they'd be able to do a lot for me and have worked with several cases similar to mine with a lot of success. They have a "bootcamp" program that is two weeks long, 7 days a week, 5 hours a day of really intense therapy or a different program that is 8-12 weeks long, 3 days a week. Both appealed to us and we're looking into getting more information. But everything we had been wondering seemed to be answered...they have housing if needed and they accept our insurance, which coincidentally changes January 1 (perfect timing!)

I was already feeling really great and mom and I were finally feeling more at ease about things. I got off the phone and got a text from my college roommate, Stephanie, not even 5 minutes later. She was just checking in and seeing how I was doing. I told her that I was good, just trying to figure out what the next step was and that we may have found a place to look at in Baltimore. She then told me how she was at an expo for adaptive equipment last week (since she's in OT school) and that she was talking to someone from Baltimore and got their business card after talking to them about me. Guess what? They were from Kennedy-Krieger! And there was my sign.. I don't know if all of it is going to work, but the timing of everything just sent chills down my back. We have to look into it a little more, but this would be great- it's closer to home, they have experience in treating my condition, there's housing if needed, they accept our insurance, it's crazy!

Yesterday was also a good day because I had Jenessa and Molly here in the afternoon and we spent the afternoon OT session decorating the gym for Christmas! I was in charge of putting together the fake 6 foot tree, which took forever. It was so much fun decorating and laughing. It's actually starting to feel like Christmas!

As if the day wasn't good enough, it just got better. Greg, from next door, came and asked if I was coming down to dinner again. I went downstairs to dinner and got to share my story about how amazing God was and everyone was really happy for me. It's the perfect story to share God's perfect timing. After dinner, Greg asked me to go to bingo. I love bingo and they have it here every Wednesday evening, but I haven't made it to any of the sessions yet. I felt like I should go with him since he's leaving Saturday...and I really didn't have an excuse not to. There were patients there from other floor and even though I wasn't very lucky, I was having a lot of fun. I was nowhere close to bingo the whole time, but I was laughing and we were listening to music- having such a good time. And then I won the last THREE games! I got a few boxes of Christmas cards and a framed wall decoration that says something like "Love endures forever."

Just as I was leaving bingo, Jay Kennedy, the pastor from the church I was going to here texted me. It's been awhile, but he had came to visit before. My roommates had written a prayer request in the church communication card and gotten in touch with him. Anyways, he texted me saying that he was at Magee and wanted to surprise me, but I wasn't in my room. I hurried back and couldn't wait to tell him how great things had been going, especially that day. We had a really great talk and he told me how much my journey was going to (if not already) impact so many people. Right before he left, Annie and Nick arrived. The four of us prayed together and then Annie and Nick stayed for awhile longer.

My devotional today read: "Let Me lead you step by step through this day. If your primary focus is on Me, you can walk along perilous paths without being afraid. Eventually, you will learn to relax and enjoy the adventure of our journey together. As long as you stay close to Me, My sovereign Presence protects you wherever you go."

"Those who know your name will trust in you, for you, Lord, have never forsaken those who seek you." Psalm 9:10

God definitely led me through this whole day and really gave me a sense of peace. This is exactly what I was praying about yesterday! Ah, God is so good!

December 8

I started the day with OT. Natalie wasn't here, so I worked with another therapist named Amy. She came in at 7:30 and our session was to go through a normal daily routine, like making sure I can get out of bed and get ready. Since we now have a discharge date (which is actually the 22nd instead of the 23rd), a lot of the focus in therapies has transitioned into making sure everything is set to go home, not just strength training. Amy was impressed at how much I could do on my own, but I still struggle with lower body dressing and I obviously can't do transfers independently yet.

I feel like I spent a lot of the day talking to different people about how I've been feeling. My mind is on overload and, like I said, the best word to describe all of it is overwhelming. I'm just so excited to go home, but I know how different things are going to be. Just the transition from a hospital type setting to home is a big change. I also think it's going to be a little hard getting back to my daily life- being home and with family, etc. and not being completely healed yet. Everyone I've talked to here has said that I have the right mindset though, anticipating frustrations or potential obstacles instead of not being realistic.

"Come to Me in all your neediness, with defenses down and with desire to be blessed. As you spend time in My Presence, your deepest longings are fulfilled. Rejoice in your neediness, which enables you to find intimate completion in Me."

"And my God will meet all your needs according to his glorious riches in Christ Jesus." Philippians 4:19

Those were words from my devotional that I kept looking at throughout the day...I'm also feeling little overwhelmed about not knowing what the next step in my recovery is going to be. We have the discharge date and know I'll be home for Christmas, but then what? We were looking into a day rehab program through Magee, but they won't have an opening for me until January 11, and I only have my house in Philly until February, so the living situation would become a problem. We've been trying to find places closer to home, but there aren't many places that specialize in spinal cord. I just keep praying for guidance in this next step. We made the right decision by coming to Magee and I just pray that God will illuminate the path and help us to decide where to go next.

I spent the earlier part of the evening in my room- watching tv and talking on the phone. During this time, my neighbor (Greg) came by twice, another patient came in once, and a woman I'd never met before stopped by. Greg is a middle aged man that I've gone downstairs to dinner with a few times and we've talked a lot about his 11 year old daughter. His daughter, Isabelle, was born with Leber's Congenital Amaurosis, a very rare eye disease that has left her blind since birth. He lights up when he talks about her and I love to listen. He's told me stories about how incredibly smart she is and he's played me videos of her singing- it's incredible. The other patient that stopped into my room is named Komal. He's also a middle aged man who loves to come check on me, especially since we are both Redskins fans. I think both Komal and Greg stopped in because they just wanted someone to listen to them. They were both talking about all the changes that they'll encounter when they leave and just all the things that have happened in their journeys over the past couple months. They don't get a ton of visitors, so I'm glad they feel comfortable coming to me when they just need someone to talk to. My last visitor was a surprise. She introduced herself as Krystal and said that her brother was a patient. She told me that she had seen me around the past week and loved that I always had a smile on my face...she also told me that she just wanted me to know how she had been praying for me. We talked for awhile and I was just so touched by her visit.

December 7

No one likes Mondays, but I feel like if I can just get through it, then the rest of the week goes so much faster. In OT, I did the same arm exercises I've been doing since day one on my stomach. Remember how I used to only be able to do them with an air splint on (to prevent bending of the elbow) and I needed assistance? Today, I did them on my own, no splint, and with wrist weights! I did all the arms machines and 60lbs on the rickshaw (which I had started at 15 and needed help before). I also got onto all 4s and did mini pushups, working on engaging my ab muscles.

I did the treadmill in PT and Steph kept talking about how strong I was...my legs are way more toned, making the treadmill easier (like the people that move each leg have an easier time controlling it), my transfers are constantly getting better, and she said she could tell how strong my arms are just by looking at them in my t-shirt. My posture while standing gets better every week and is starting to feel more natural and not as forced as it used to.

My friend's mom came to visit me again- Mrs. Lenny. She brought lunch from a place where she lives- a gluten free burrito! It was so good. I love having company during the downtime (especially when it's during the day and we can sit in the sunny window). I still can't get over how blessed I am with support like this. My friend's mom, who I had only met once before I got sick, takes the time to drive to Philadelphia and spend time with me. The relationships that I've built over the past few months are so precious. They're evidence of the good God is creating through this experience.

Today's devotional seemed very appropriate..

That last verse is one of my favorites. It's so true that when I try to get through the day without prayer or talking to God- telling Him about what I'm having trouble with or what I want to accomplish, the day seems so much longer. When I take the time to include Him, I just feel more at peace. I can deal with my emotions better. And trust me, there are a lot of emotions each day, haha.

December 4, 5, 6

Friday's therapy consisted of more tall kneel, ab workouts, balance control, and being on my stomach. It was exhausting! But I was glad to have Molly there during one of the sessions to keep me laughing. The added bonus was that she brought me coffee, oatmeal, and did my nails afterwards :)

I'm usually pretty tired by the end of the day and don't feel like wheeling myself anywhere- I'd rather heat up food that my family has put in my fridge and watch gameshow network or talk on the phone, haha. That's exactly what I was doing on Friday when the man next door asked if I'd eaten yet. I really wasn't very hungry and definitely didn't feel like going downstairs to the dining hall, but something made me go down with him. A lot of patients were downstairs eating when we got there and I was surprised at how many staff and patients knew my name and seemed happy to see me. I usually have friends or family with me, so I don't go downstairs at these times. 

I feel like I'm constantly encountering people- both patients and staff- that know who I am and I feel bad that I may not know them. It seems like everyday someone is complimenting me on how great I look and how far I've come. I have a good memory and know almost everyone's name that I've worked with, so I'm always surprised when people I don't recall ever seeing say hi to me. Dusty even told me the other night about how many people have stopped him and told him how I've made their day at some point. And another patient told my mom about how I sit in the lounge window and soak up sunshine so I can spread it to others. I don't even realize doing these things or the impact I'm apparently making others. When I think about that, I'm thankful that God has given me this opportunity to spread His love and hopefully make others smile. 

My parents were here again over the weekend and they brought some of the most amazing food! My aunt had made a beef and mushroom soup that we kept in a crockpot in my room on Saturday. It made the whole room smell amazing...like home. She also made me some amazing chocolate chip banana bread (gluten free, of course, haha). And my roommates sent over food as well, and another banana bread loaf (both may or may not already be gone...)

 I'm so thankful that we decided to come to Magee when we were looking at which rehab facilities to go to. New Jersey and Atlanta would've been way too far away! I definitely feel that an important part of recovery is having a strong support system and I honestly can't imagine anyone having a better support system that I do. I still can't get over how many people have been reaching out to me, sending mail, making visits, etc. It's actually a little overwhelming...It's just so amazing to see or hear about how many people are pulling for me. Not a single day is easy and I'm just so thankful that I don't have to go through any of this alone. 

I did the glider machine again over the weekend. Steph wanted me to work on trying to stand up for longer periods of time and this is a perfect way to do that because you can pump the seat up from a sitting to standing position and if you feel lightheaded at all, you can just start pumping the arms (like an elliptical) and get the blood flowing again. The longest I've been able to stand was about 7 minutes and that was during the standing group last week. Well, while on the glider, I was standing still for over 15 minutes and I never once got dizzy! Since I was able to stand for this long without any drop in my blood pressure, I get to try that robotic treadmill on Wednesday! I originally wasn't going to be able to because the set up takes about 10 minutes and they thought I'd pass out from standing and not moving for that long, haha. I'm a little nervous, but hoping for the best- the robotic treadmill is supposed to be even better than the one I've been doing because instead of having people move your legs, it's electronic and can be much more precise in its movements. 

On Sunday, there were several activities around the building. We went to open art studio, where I finished a project I'd been working on for the last couple weeks (Dusty's Christmas present). I'm really impressed with it and can't wait to post a picture after Christmas! I also went to open greenhouse and planted a holly bush for my grandma. There was even a jewelry making session later in the afternoon! I had gone to one of them a few weeks ago and made my mom a necklace. When my grandma heard how much I enjoyed it, she bought me all kinds of beads and tools to make my own. I've made several bracelets and plan to give them out as Christmas presents since I obviously haven't done much shopping. The lady in charge of the jewelry workshop was really impressed with all the bracelets mom and I had made over the past couple weeks. These sessions not only give us something to do on the weekends, but mom and I enjoy getting to talk to patients from different floors and hearing their stories. I don't know if I mentioned it, but the 3rd floor is all general rehab and amputees, 4th floor is stroke and brain injuries, and the 5th floor is spinal cord (where I am). 

Every time Mom is here, she helps me stretch out my legs to keep good flexibility and reduce some of my ankle swelling. I always attempt to move my toes, feet or legs during this time and although the movement may not be that obvious, she can at least feel the difference in strength from one week to the next. The reflexes in my feet have gotten more apparent over the last couple weeks as well. My doctor from home said this is a great sign and that everything is intact, so I'm still playing the waiting game...praying everyday for patience. 

December 2 and 3

This week went by so fast! Dusty got in on Tuesday night and his sister and mom arrived Wednesday. We kept busy, but brought out Phase 10 whenever there was any downtime. I made my first batch of gluten free brownies on Wednesday. Everyone knows how much I love cooking and baking, so it's nice that Tracy and I can spend time in the kitchen at least once a week. (I even sent a plate home with Annie when she visited Thursday...she said it was like I was still cooking for all the roommates like I used to.)

Dusty got approved by my therapists to do transfers on his own and I also got upgraded for nursing to do my transfers. We were using a lift in therapy and in the bedroom before I was strong enough for transfers (and when I first got here, I couldn't even support my own head when they used the lift). I wasn't able to do them in the bedroom until this week because they had to get better and stronger. Now I can because they've improved to "minimum assistance." Hard to believe that they think I'll be able to transfer myself at some point to different chairs or into bed, etc.

We worked on lower body dressing again on Wednesday and I got pretty frustrated. It's just so hard to lift yourself up and pull up pants at the same time...We tried a leaning technique (like leaning from side to side in the chair), but pushing myself up in the chair and trying to grab the pants at the same time is just too much to do. We finally worked out a way for me to do it in bed by rolling from side to side, but I'm just hoping I get more movement in my legs and hips and none of this will be a problem.

Tracy had me go to the roof again and practice more curb cuts during rec therapy. When we did this last Monday, I tried the largest one with the biggest hill and got stuck, then started rolling backwards totally freaked myself out. Today, I did that one first and made it up all by myself!

In PT, Steph and I worked on doing a car transfer. They have a really old car (on the roof of all places, haha) that people can practice with. It's a really awkward transfers because there's not much room for someone to get in front of you as you move from the wheelchair to the car chair, mostly because car doors don't open all the way and then the dash board gets in the way. We did it though! I'm hoping to practice in one of my family's cars or one similar in size next week to see how it goes.

Dusty also learned how to set up the stim bike this week. We're trying to order one through insurance since I get such a good response, but who knows how that'll end up. If nothing else, we may be able to go to a rehab place at home and as long as you have someone that knows how to set it up, you can spend extra time doing it. I'd love to have extra therapy on my own time by doing the bike, so this would be perfect.

Some PT students came to Magee for a lab and had asked me to participate. I don't mind doing things like this since I'm a student too and know how important hands on practice can be. For some reason, I just wasn't in the mood to help, though! I'd had an exhausting day of therapies and the last thing I wanted was to have a bunch of students watching me. Dusty convinced me to do it anyways and it actually went really well. They were impressed with my range of motion and how flexible I am since joints tend to get stiffer during spinal cord injuries and there's usually a limitation on how far certain body parts can be stretched or moved. Luckily, my parents and Dusty made sure to stretch me out the whole time I was in ICU, so this was never a problem for me. At the end of the lab, the therapist and one of the students helped to stand me up. Any time I can get weight through my legs is good, so it was kind of like extra therapy for me. The student even felt my right quad contract! and I didn't need any help at the trunk...Dusty was impressed with how much my posture has improved since he hadn't seen me stand the last few times.

Annie got here in perfect timing Thursday...just as Dusty was leaving. Goodbyes are always the hardest, so I was relieved she got here before I could get too upset. (Side note- I burst into tears earlier in the day when I realized that in less than 3 weeks, I won't have to say goodbye to him or my family again since I'll be with them all the time. Dusty said I cry when I'm happy and when I'm sad, but the happy tears were much easier to deal with, haha). It was such a great visit with Annie and reminded me of all the times she would come upstairs and lay on my bed, talking about everything. We may have shed a few tears when I made a comment about probably never going back up to my bedroom on the third flood of our house here in Philly. We read a couple entries from my devotional together and the strangest thing happened...the whole time I read outlaid, my legs were spasming and jumping a bit. They weren't doing that at all before I picked up the devotional. I felt like it was God's way of telling me to pay attention to the words I was reading.

Here's a little bit from what I was reading and what we were talking about:

"When you keep your focus on Me, you experience both My Presence and My Peace."
I thought that was perfect timing because I was focused on Him instead and that's when my legs started moving. I feel like things like this happen a lot. When I stop being so focused on what isn't happening or how slow things are progressing and just spend time talking to God, that's when I start to see more changes.
And just when I started thinking about this, I read another entry that said "Through your sacrifice of precious time, I bless you far more than you dare to ask." God really just wants us to have that relationship and to talk to Him- when things are both good and bad. I'm trying to spend more time thanking Him for all the little things I encounter throughout the day and to voice my concerns and hopes and dreams.

"Devote yourself to prayer, being watchful and thankful." Colossians 4:2

Annie and I reread this passage and the part that really stuck out to me was " call upon My Name...At that instant, the battle becomes Mine; your role is simply to trust Me as I fight for you." A lot of times, I feel bad just coming to God with all my problems, but this is what He wants. He wants us to ask for help so that He can show us how beautiful He is. Annie said something that really stuck with me. We were talking about how bad things happen to good people and I was just trying to wrap my head around how all this happened, which I do often, even though I know God is in control. She said that God didn't make this happen...we live in a broken world and it is times like this that God is able to show His beauty and power. I keep trying not to be so fixed on the why and more focused on God's works through this whole journey- it's a daily battle, but each day I'm made more aware of how many great changes have come from the last few months.

November 30 and December 1

Yesterday was my dad's birthday and although we don't do much for birthdays (usually just a favorite meal and family time), I was still sad I wasn't home. I know I'm not missing out on too much outside of these walls right now- school can be picked back up when I'm better and I can make new memories and have new adventures or experiences once this is all over, but that doesn't make this any easier. My mom keeps reminding me that I can't change the circumstances, but I can change my attitude. She also said that I should make the most of this experience- maybe God wants me to make relationships here...It's just weird to think that I'm working so hard and so impatient with my recovery and I should be enjoying this time somehow...like enjoying making new relationships and experiences. I have no idea what God has in store for me or His reasoning for all of this, but I am trying to use this time to draw closer to Him and to interact with other people, especially patients that don't have many visitors.

Christin kept me company yesterday afternoon and even got to stay and watch the treadmill. I wish the sun would've shined more through my favorite window, but we still went to the lounge and I still kept warm for the most part. Neither Steph or Natalie were there yesterday, but I did a lot of arm strengthening exercises in OT and the treadmill went well for PT. Ellen, my sweet 82 year old roommate, and I went down to dinner together. I wasn't very hungry, but I was trying to be social and I knew it was Ellen's last night before she left to go home. We got ice cream and decided to bring it upstairs to our room and watch The Voice. I wish someone could've taped us trying to get upstairs- me with my hot tea and ice cream in my lap and her with her decaf coffee and ice cream. I tried to hold the elevator for her, but it shut. It took me up a couple levels and I had to go back down to the cafeteria level to try to find her. We were cracking up and had everyone else laughing when we got back upstairs. `

I know I've been fortunate to have visitors every single day that I've been here...that's every day since October 8. Today is the first day that I don't have someone coming...at least that I know about. I knew there would have to be days when this would happen and I really wasn't sure how I'd deal with it. To top it off Ellen left this morning. So it's really quieter and emptier around here. I had therapy all morning (9-12) and then met Julie to paint a little bit before she had to leave for the day, so my morning was really busy. The afternoon, however, is going much slower. I'm trying to keep myself busy by reading a new book I bought on the kindle, catching up on these blogs, and watching gameshow network, haha. I went to the lounge a little bit ago and talked with one of the other patients for awhile, which helped pass some time.

My therapies this morning were pretty tiring. I got into tall kneel and on all fours again, which is always difficult, but I like putting that weight on my legs because I'm hoping and praying something more will happen in my lower extremities soon. In PT, Steph said that the other therapists I had worked with while she was off reported that my transfers were minimum assist. If I can do that consistently with different people and on different surfaces, then I won't need an electronic or manual lift when I leave in three weeks (which is the plan!). We also discussed different options in a custom wheelchair. I think I mentioned it before, but they will give me a loaner chair when I leave that is similar to what I've been using. We'll put an order in for a custom chair, but it takes 3 months to come in. If by some chance I don't need the custom chair in 3 months, we can just cancel the order (how wonderful would that be?!) My legs and feet keep spasming, like they're trying to work, so I'm trying really hard to be patient. I know it'll happen when I least expect it, but it's all I can think about!






































I have to admit that I didn't start my day with my devotional, like I prefer to. I actually just read it after I typed up the beginning part of this blog. How amazing is it to know that God knew us before we were even born? It brings me back to the realization that this isn't my story to write...I'm just living it. And no matter what I do, I am loved...an everlasting love. It's true, in this day and age, we get so caught up in the business of life that we lose track of time and don't find that "stillness." I'll admit it- I wasn't very good about reading my devotional everyday or taking time to talk to God or thank Him for things throughout the day. That's one thing that this atmosphere has helped me with. Granted, I am really busy with therapies, but there is still some down time that I've chosen to fill with prayer and thinking and trying to deal with all of this. "The ultimate protection against sinking during life's storms is devoting time to develop your relationship with Me." It's easier to devote the time when you're removed from life's chaos, so I pray that I can continue strengthening my relationship with God when I leave....which is thought to be on December 23rd! I have so much I want to accomplish before then, but the count down is on and I'm so thankful that I'll get to spend Christmas at home.