October 29

Almost every day I feel like my devotional passages were written for me and what I'm going through or feeling at that time. Today wasn't any different. It said:

"Beginning your day alone with Me is essential preparation for success. A great athlete takes time to prepare himself mentally for the feat ahead of him before he moves a muscle. Similarly, your time of being still in My Presence equips you for the day ahead of you. Only I know what will happen to you this day. I have arranged the events you will encounter as you go along your way. If you are not adequately equipped for your journey, you will grow weary and lose heart. Relax with Me while I ready your for action."

This is another reason why I try to start my day with the devotional and a prayer. Each day brings new challenges and I don't think I'd get through it without faith.

I went to the breakfast room by myself this morning. I wasn't able to leave the room alone before this week, because of the trach. Last week, when I went to breakfast, the staff had to help me eat. Today, I pulled up to the table and the girl that had helped me before said "you need assistance, right?" I was proud to say "no, a lot has changed since last week." (I also didn't really have a voice last week either). I proceeded to cut my sausage, make my coffee and eat my food on my own.

One of my favorite things to do in PT is the stim bike. Last week, I mentioned that my legs seemed to respond really well and even registered as doing some work. Today, the power increased a little bit, meaning I was doing slightly more work. The bike has a motor on that moves my legs and when the sim and muscle reaction is strong enough, the motor will turn off and your legs are moved just by sim and muscle contractions. Well, the motor turned off for a few minutes today! My therapist told me it should get better each week and was pleased with today's session.

In rec therapy, we played wii dance. Tracy and I had played about two weeks ago and I think I got like 500 points (typical scores are like seven digits, but she made me feel better by saying that maybe the sensor wasn't close enough, haha). I had a hard time griping the controller then, and I ended up only using my right hand since the left was so weak. Today, I got a high score!! My family and Dusty had taken videos of both times I played and watching them side by side is unbelievable..and that's only a 2 week difference. 

Remember how difficult I said putting on pants was? Well, we practiced dressing again today. I tried about 3 different approaches to hook the pant leg on my foot, but I just can't move my leg to get it closer. I finally gave up on those strategies and just bent over, stretched, and put it around my ankle. I'm thankful for those years of dancing and my flexibility! 

At lunch, I peeled my own orange (I've always had trouble with that!) For dinner, Dusty ordered sushi since he knows how much I love it. I couldn't believe it, but I ate the sushi with chop sticks!

The night ended with a Halloween party for all the patients thrown by a local church. They had candy and tons of food (including gluten free brownies!) I also got to visit with 3 of my friends from school that I haven't seen in awhile (since I don't remember their visit when I was at UVA). It was nice to talk and laugh like we would any other time and in any other setting.

October 28

The first sentence in my devotional this morning was: "Do not expect to be treated fairly in this life." That sentence hit hard. There are times when I feel like saying "this isn't fair" or "why me?" It went on to say "when someone mistreats you, look at it as an opportunity to grow in grace." No one is mistreating me (quite the opposite, actually), but sometimes I do feel like life is mistreating me. Then I think about the next part of that sentence: "an opportunity to grow in grace."

This isn't an experience anyone would want to go through, but I'm trying to see the good in it. On the day I got to rehab, my mom and I looked at each other and said "I'm never taking anything for granted again." It's easy to get caught up in life and not realize how much you have. I mean, little things like brushing your own teeth and tying your shoes. There are people here in a lot worse shape than me. Some people are here to learn how to deal with their condition, knowing they won't get back to 100%.

My aunt texted me and had a good point. She said that these days are important in shaping how I interact with my patients and my approach to getting there. I feel like I've always been good at talking to people and my patients seem to like me. I can only imagine how much better my exams are going to go after all this. It has already changed how I look at everyone.

Some highlights from today include:
-Dusty and his mom arrived for a few days
-I was on my stomach again in OT, but it went a lot better (maybe because there's no trach)
-I was on the treadmill again and did 5 more minutes! Everyone said my posture was much better too
-When the nurse changed my bandage, she said the trach hole was already closing up
-I made my own coffee and filled up my water bottle at the soda machine (this seems small, but I haven't been able to lean far enough to do things life this. I also brushed my teeth at the sink, instead of in a cup)

October 27

One of the respiratory therapists, Jeff, stopped by early this morning just to check on me. He said "I always come to check on my favorite patients, even when they don't need me anymore." A lot of the staff has said nice things like this to me and it helps me stay positive. Although it's tough all of the time, I think having a good attitude has helped me build better relationships with the staff.

This morning, I was able to get my contacts open for the first time! (I love wearing daily contacts, but those packages are really sealed tight!)

Today, I tried the glider machine in PT. It's an elliptical-type machine that stands you up and pumps your arms and legs. I found it very difficult and tiring, but my therapists said I did really well for my first try. In OT, we practiced getting dressed. I was able to put a larger shirt on over my clothes by myself, but the pants were a different story. Being flexible works to my advantage, but it's something I have to work on. 

In the afternoon, I had a really nice visit with my friend Marichris. I got to show her around Magee. When we went to the rooftop, we were happy to see that the greenhouse was open. The woman in charge let us paint pumpkins and pots to put plants in. 

I also had a nice visit with Rachel in the evening. We talked in my room until my roommate was ready for bed and then went to a conference room. My roommate is really nice, but she is 80 years old and has an earlier bedtime than me. Rachel said I sound and look like the old me. Being able to do things on my own and actually being able to talk instead of whisper is helping me to feel like myself again.

October 26

After 52 days, I finally got the trach out!! (Dad counted the days, haha) As soon as the nurse came in to get me up, I told her today was the day. She was so happy for me that she called respiratory right away so it could be out before breakfast. Jarron, the guy that removed the trach, drew a smiley face on the gauze on my neck that covers up the healing hole. All the respiratory therapists had gotten to know me pretty well over the last two weeks, so they would go out of their way to see me and congratulate me all day. It was funny how many nurses and therapists did a double take when they saw me.

My hand cramps are still really bothersome and get in the way of things I'm trying to do throughout the day. I could be eating and my hand will cramp, causing the fork to fall out of my hand. I've struggled to cut my food, even my omelet in the morning. (And there was no chance I could use my fork to cut softer food, like I used to.) This morning, I cut my sausage patty! This was big considering that I couldn't feed myself a week ago, I also opened my milk carton... you know, those cartons that gave you such trouble at lunch in  elementary school. I've tried multiple times to open them, and I would only get it halfway. It's crazy how little things like this make my family and me so happy.

Tracy and I tried to come up with a list of goals and things I want to work on during rec therapy. We came up with cooking, doing my hair, and working on my handwriting. My handwriting is currently worse than Dusty's! (love you, Dusty) She wants me to find a recipe on Pinterest (we're both gluten free), write the recipe down, then we'll cook it. We had a little extra time at the end of our session, and plugged the straightener into the wall. I picked it up and surprised both of us by straightening the front of my hair! I also blow dried my hair after my shower tonight...I couldn't even lift the blow dryer up last week.

My sweet weekday nurse, Miss Renee, had all my medications switched to pill form, since I can now swallow all of them. This way, they don't have to go into the feeding tube. The only thing they're using the tube for right now is a liquid protein supplement. I talked to the nutritionist, who said she would look into getting a pill form of the protein as well. The tube has to stay in for at least 6 weeks. I got it on September 16, so she said I may be able to get it out next week! Fingers crossed!

Last week, I painted a sunrise over the ocean, but I couldn't hold my elbows up and had to lower the table so I could still use the arm rest. When I met with my art therapist today, I finished it by writing a few words I thought I needed to read each day. I couldn't believe that it actually looks like my handwriting! I guess I need to start practicing my handwriting with a thicker pen or marker. The painting is below. I'm already excited for art therapy next week.

October 24 and 25

I love the weekends because that's when my parents come. It's so exciting to see them, especially because so much changes in the 5 days they're gone. An added bonus is that Mom brings me home cooked food each visit. A lot of firsts occurred this week (some before I started the blog). I started to feed myself, brush my teeth, change the tv channels, brush my hair, use my contacts, etc. They were amazed and it made me proud and more aware of all the progress that has occurred. Today, I got to have chicken salad, hash brown casserole, and leftover gluten free pizza from home because 1) My mom is the best and 2) I GOT UPGRADED TO A REGULAR DIET!! I'm still so excited about this.

I sign up for extra therapy sessions on the weekends (I'm here so I might as well stay busy and work hard, right?) For PT, I got on the tilt table, which slowly brings you into the standing position. It's nice because you can be raised up in increments so the blood pressure can be monitored. Unfortunately, blood pressure tends to drop when you've been sitting for so long, so you have to do it several times to get your body used to it. Before, I had spent 45 minutes on the table, working my way up to 55 degrees. Today, I was able to do 55 minutes and get to 71 degrees. I know I can stand all the way though because I don't have any problem when I'm on the treadmill. The main difference is that you are constantly moving, increasing BP, as soon as you stand up on the treadmill and are strapped down on the tilt table.

In OT, the therapist worked on my fine motor coordination.  She gave me some baseline tests and seemed genuinely surprised at how well I did them.  It's pretty obvious that my left hand is coming around slower than my right, but I've gained a lot of strength this week.  She also worked with me some on a machine called the rickshaw that helps build the strength needed for transferring from the chair.  The day before, I could barely push the bars without help and today I managed to do 20 on my own.

My brother, James, got here Saturday night. I hadn't seen him in several weeks (since I was in the neuro ICU at UVA). He's a student at George Mason and also works a lot, so I was happy that he finally had some time to drive to Philly (and I think he's coming next weekend too!)

It's exciting to see people that visited me at UVA ad knew how bad my illness had gotten and how immobile I was. I couldn't control my high temperatures, had nerve pain, and was on the ventilator. I still have poor temperature regulation, but at least I haven't really had a fever in a while.  Luckily, I don't remember much from the month of September. I remember being sick and going to the emergency room in Winchester, but I don't remember being admitted or being flown to UVA. I started remembering about 2 weeks before I came to Philly. And when I got to rehab, all I could do was roll my wrist and barely wiggle my fingers. I also couldn't talk, so anyone that hasn't been to see me here sees a huge difference.

Sunday was nice and relaxing. I didn't have any therapy and it was nice to give my muscles a break. I've been having a lot of cramps in my hands, so they started a new medicine Saturday night. I'm taking it 3x a day, but you have to get several doses before it makes a big difference. Hopefully, they'll be better this week because they hurt and prevent me from doing tasks like driving the wheelchair and holding my silverware.

Other positives from today included: still no suctioning, the doctor said I can get the trach out soon, I ate tacos for lunch and wings for dinner, I felt like my legs, feet, and hips were asleep. I get excited about that because that's how I felt before I started to get feeling in my arms. Mom painted my nails and Molly did my eyebrows, so I'm starting to look more like myself. The day was made even better by watching the Redskins win (HTTR!)

I have loved having visitors and my family isn't able to be here during the week, so I am so thankful for the friends that have come to spend time with me.  They are not strict about visiting hours here and are always nice to my visitors that come with me to therapy.

October 23

Today started with seeing the respiratory therapist, like usual, to clean around the trach site.  We took the last step to having the trach remov,ed, which is to cap it so all my breathing is on my own.  If I can tolerate this through the weekend then I can have the trach pulled on Monday or Tuesday.

I had OT at 9. Natalie made me lay on my stomach, a position I have always hated. Laying prone gives the hips a good stretch and strengthens the neck muscles by lifting up. It went much better than the first time I was on my stomach (but I still don't like it).  We worked on strengthening my upper body so that I will eventually be capable to transferring myself in and out of the wheelchair.  This will be important as I look towards going home.

My eyes have had a lot of problems throughout this disease process. Today, I finally got an eye exam. What's really cool is that one of my teachers from school works here and did the exam.  Turns out a lot of my problems have resolved, but I have convergence excess and a tracking problem. My prescription has also changed slightly.  Fortunately, I have a computer program from school that will help with much of what is going on.

Steph was out of town for a wedding, so I did PT with a guy named Andrew.  We worked on posture and balance.  He found it hard to believe how much arm strength I have after only two weeks of being here.  I am realizing how much stronger my body is everyday.

My diet was advanced to "regular," which means I can have anything that I want.  Because she knows how much I have missed it, Annie brought me chipotle.  It was wonderful!  Dusty and I enjoyed the evening with lots of friends, which is why this is so late being typed up.  Sorry!

Dusty and I had the opportunity to participate in Magee's fundraiser called "walk it out".  They assign people to walk on a treadmill to cover 24 hours straight to raise money.  Dusty and I walked side by side (he was on a regular treadmill and I was on the anti-gravity treadmill).  If you have not seen the treadmill that is used here to teach spinal cord injured people how to walk again you should take a look at the photos on Magee rehab's website.

My first team meeting with all of my caregivers, doctors, therapists and family went very well.  Dr. Formal even said it was the most fun he has ever had at a team meeting.  Everyone says that I am doing remarkable and they are excited for my progress.  The thought right now is that I will be here until the beginning of December.  I will keep you updated as they update me.

I have started to receive mail and it has been great to hear from friends.  If you are interested in sending a note or a funny photo please do!  My address is:
1513 Race Street
Philadelphia, PA 19102

October 22

Today was another eventful day! I was able to do my contacts and makeup on my own again. The staff is finally saying that I'm starting to look like the girl in the pictures on my walls, surrounded by so many loved ones.

In PT, I did the stim bike. They attach pads with electrodes to the muscles responsible for whatever movement you want to make. The therapists said it was a good sign that my legs responded so well to the stimulation, Afterwards, I practiced sitting and maintaining balance. I was surprised to find that I could hold my balance much longer than yesterday. I could even raise my arms off the mat!

I cooked my first meal in OT- gluten free pumpkin pancakes! I had to do everything on my own. I even cracked the eggs open with one hand! (I needed the other arm to balance while I leaned over the table). But I'd seen it on the cooking network and never tried it.

My trach is still doing well and I didn't even need suction (cleaning) today! I've been wearing the speaking valve full time, which is the next step in getting the trach taken out. Everyone has been commenting about how nice it is to finally hear a clear voice after I'd only been able to mouth or whisper words for the past 2 months. The next step in getting the trach out is to put a cap on it for 72 hours and not need suction, so I'm hoping that will happen soon.

My speech therapist upgraded my diet plan- no crunchy food yet, but I can finally have chipotle!! My nurses are also trying to get my liquid medicines switched to pills so I can start the process of getting the feeding tube removed.

Today, my devotional read: "Remember, all good things--your possessions, your family and friends, your health and abilities, your time- are all from me. Instead of feeling entitled to all these blessings, respond to them with gratitude. Be prepared to let go of anything I take from you, but never let go of my hand!"

I need to remind myself to "let go and let God," but it's difficult when it's something as big as wanting to walk again. The]nerve connections need to be made in order to achieve full movement, so I need to take it one day at a time. But my personality is pretty much opposite- I'm a planner. I like to make a list and check things off. I don't like to sit around and take things slowly. I'm constantly having to ask God to help me keep my patience and positive attitude that the staff have admired. The doctors and therapists are impressed with my progress and expect a full recovery, but I don't want to get my hopes up.

Last night, I didn't get to my devotional until bedtime. I use "Jesus Calling" and have it in book and app form. I was laying in bed, reading it on the iPad as one of the CNAs, a 60 year old man named Alfonso that has worked here since 1984, got me ready for bed. He asked what I was doing and when I said "reading my devotional," he peered over my shoulder. "Is it a religious thing?' he asked. I explained it to him and when he still seemed interested, I read it to him. I don't know his religious beliefs, but this was a special moment. Moments like this remind me that God is using me to impact other people. That doesn't mean that I don't still get frustrated and sad. It's a daily struggle, but I have the best support system anyone could ask for.

October 21

Hello everyone,

I've decided after seeing the outpouring of love and support that I would keep a blog to share some more specific details of this journey. I will try to keep it updated frequently so everyone that has kept me in their thoughts and prayers can know how I'm doing. I've also asked my mom and Dusty to contribute whenever they can.

Before I start I want to introduce my therapists, who I will refer to by name from here on. My PT (Physical Therapy) therapist is named Steph. She works on my strength and movement, especially in my legs and trunk. My OT (Occupational Therapy) therapist is named Natalie. She works on getting me back to everyday tasks, arm movement, and fine motor skills. I also spend time with my speech therapist Amanda, recreational therapist Tracy, and Art therapist Julie. Rec therapy is whatever I want it to be-using the computer, putting on makeup, etc. I see a speech therapist because my vocal cords were paralyzed and since I have a trach after being on the ventilator. I signed up for art therapy to fill my time and figured if I was awful, then I could at least laugh at myself.

As you all know my Mom, Dusty, and me have updated Facebook about the progression of my illness and the start of the road to recovery. Every night I talk to my mom and she suggested that I list three positive things (sometimes more) from my day. I'd like to share those moments with everyone,  starting with today.

This morning I got up and for the first time, i was able to put my contacts in and brush my hair.  The only other time I attempted my contacts was when the therapist was scooping them out of the container and Dusty was holding my eyes open for me (this was a big struggle because we put the wrong prescription in each eye and had to start over).

In PT, I was able to push myself forward, ,gain balance, and maintain it. This is something that I didn't come close to doing last week.

Before lunch, the ENT doctor came in and replaced my trach with one that allows me to cough and talk better. This is something that I was very anxious about and I was relieved it went so smoothly. The doctor even said that if I went through the right steps that I could meet my goal of getting it removed next week. He even told me that I didn't need to see him again (It's nice to check doctors off my list of caretakers!).

This afternoon I got to do OT with a chocolate lab therapy dog named Joey. I worked on brushing her and throwing a ball for fetch all while maintaining balance.

And tonight I was able to take my contacts out by myself!

I am making a lot of progress and they are keeping me busy, but I will try to update this often.

Thanks again for your continued love and prayers. I attached two photos- one of me wearing my contacts and after doing my own hair and makeup (I even curled my eyelashes!) and one with Joey and Natalie.