Click the picture for the story of Calypso, the Three Legged Green Sea Turtle, and why she's my symbol

Thursday, December 29, 2011

2 Years

This is the two year anniversary of my accident. Not quite as depressing as the first one, it still stirs up different emotions. I thank my family for providing me with distractions all day, making me forget until almost 9 o'clock in the evening that it was December 29th again.

For those who have missed the last two years, here is a quick recap. Click on the links below to view posts.

First Blog Post - Back Surgery 1, Arm Surgeries 1, 2, & 3
Back Surgeries 2 & 3  (excuse the typos, this was directly after surgery)
Arm Surgery 4
Year Anniversary of the Accident
Back Surgery 4

My life has changed more than I could have possibly imagined. I was told by one of my doctors:
"You will be ambulatory in a wheelchair but statistically you will never walk again."
 Here I am, two years later walking every single day. I remember that when I was first told that my spine was broken and would need to use a wheelchair for the rest of my life, I was in complete denial. I stated to my family that was in the room with me, "I will not be stuck in a wheelchair! And that is it." Though this turned out to be initial blind optimism the words have turned out to be oddly prophetic. I may be using canes and an ankle brace but if this is what it takes then it is worth it.

These past two years have been the most difficult years of my life. I have been challenged physically and emotionally, seeing my world change in unexpected ways. But this is life; whether I had perfectly working limbs or not the world refuses to stop for anyone. Friends move away, relationships come and go, and the sun continues to rise and to set.

Thank you everyone who has gotten me through the last two years. Thank you Mom, who has been there day in and day out since day one. Thank you Dad, who has supported me through all my best and worst decisions and loved me anyway. Thank you my brothers and sister, keeping giving me the support I need to keep going. Thanks to all my extended family, some of you opening up your homes, all of you sending goods hopes and wishes. Thank you Philip, Tony, Kelley, Kayla, Ozcur, Darlene, Steve, Cat and all the other friends who ignored me when I told them I couldn't do something and made me do it anyway. Thank you to my land therapists, my aquatherapists, to the entire staff of Kennedy Krieger, especially the International Center for Spinal Cord Injury (ICSCI). Thank you Meredith, Stephanie, Marjory, Moriah, and Brooke, all of you earning my respect and gratitude, most of you earning a permanent place in my head, reminding me of what I should be doing when I walk. Thank you to Mindy and Lynn, for reminding me what a pain I can be and exactly how far I've come. Thank you to YMCA, for giving the turtle a place to swim. Thank you Steve Ackerman, for helping me to get a handbike and getting me back out on the road. Tom McNally, for opening up your home so that I could continue with physical therapy. Thank you to all the orthotists who made the leg braces and ankle braces that are the tools that allow me to walk. Thank you to all of you who have been reading this blog, following me on facebook, or keeping track of my videos.

I can say honestly that I would not have made it this far if it were not for all of you. I hope everyone reading this will remember that no matter how lonely we can get we all have people behind us, helping us in ways big and small. "It takes a village" does not only apply to raising a child, it applies to every single one of us.

Monday, December 26, 2011

Post-Surgery Physical Therapy

Sorry I haven't written the whole last week. I've been so exhausted from PT every night that I was barely able to keep my eyes open. So here is the quick version of my week in PT.

The week of physical therapy following surgery was more intense for my legs than any normal sessions would have been. I have multiple back restrictions (no bending, no twisting, no lifting over 10 lbs) from my back surgery, making it harder to find activities I could do. Most of the activities I was able to do involved my legs, which meant that my legs got worked out 3 times as much as they usually do.

I did a lot of walking and standing balance activities. One of my goals was to increase the distance I could walk without getting completely exhausted. I'm not sure exactly how far I could walk before but my therapist set a distance of 1200 ft for my new goal. Needless to say by the end of the week I blew that goal out of the water. The balance activities included putting my feet at different elevations, on different surfaces, and standing with and without my AFO (Ankle Foot Orthosis). My legs ended up feeling like jello after all of that.

 This exercise forces the weight onto my left leg, the one that still has considerable weakness. The small step was replaced with steps of varying heights, the tallest reaching about 6''.

After I mentioned the soreness these exercises were causing my legs, we eventually switched it up. I was given several exercises that focused on my hamstrings (the muscles running behind the knee) and I experimented with the use of the biofeedback machine.

A bit of background: When I first started getting muscle contractions in my legs it used to take every ounce of concentration I had to get even one muscle firing. Now that I have significant use of much of my left leg I am having trouble turning some of these muscles back off again. My hamstrings, the group of muscles that together bend the leg at the knee, are being hindered by the fact that my quadriceps, the thigh muscles responsible for extending the leg, won't turn off. In essence I am fighting my own muscles every time I attempt to bend my leg. 

The biofeedback machine, the NeuroMove.

The biofeedback machine is connected to multiple electrodes that tell me when certain muscles are active. The particular model I used, the NeuroMove, sets measurable goals so that you are able to see when a muscle is moving. In this case, I was able to use it to show when my quadriceps were kicking in. This way I could consciously relax the muscles and see visible results on the screen. I achieved limited success with the machine, as far as machine measured results. What I did gain was the sensation of what it was like to have normal functioning muscles again, something I can attempt to repeat from now on.

The last noteworthy exercise I did was jumping on a mini-trampoline the Friday before I left. This was something my therapist had wanted to experiment with once she saw how high functioning my legs were. Harder than it looked at first, I had difficulty even bouncing gently. My main problem was that because I have greater weakness in my left leg it is hard to move both my legs in unison. Eventually I was able to get them both moving in a rhythm, even getting a small jump here and there. As easy as this sounds, this was one of the hardest workouts I got all week.

At the end of the week I was given a home program, a booklet with exercises and stretches handmade just for me, even though I'm not able to practice all of them yet because of my spinal restrictions. The exercises in the booklet focus on strengthening the muscles and areas that still have some weakness. I've received one after each round of therapy at Kennedy Krieger, each one with slightly different exercises based on how far my body has recovered. 

This was not where I was expecting to be after surgery, though I am pleased with the results. I'm only a step behind from where I was before surgery instead of the three I had been dreading. At the end of the day, I'm tired but I know I will be back to where I was and farther in no time.

Sunday, December 18, 2011

Freedom, Distance, and Limits

I'm finally out of the hospital! We've rented an apartment for a week while we're here. It's downtown, on the 23rd floor with a view of all of downtown Baltimore. Breathtaking!

I've been able to walk farther and farther each day. Yesterday I made it down the hall and back. We've estimated that the distance is about a block when I walk the whole length of the building. Today I pushed my limits: I walked down the hall, down to the mezzanine level where they had the business meeting rooms and a computer lab, down to the first floor lobby, and then up to the 23rd floor again, returning to the hallway outside the apartment.We've estimated that we walked a little over 2 blocks.

I figured since I made it that far I could keep going. I started walking to the end of the hall. Midway through I started feeling light headed. My mom, who was walking with me, said I was starting to look more and more pale. I realized that my walk was ending so beelined for the door. I made it before anything bad actually happened but I discovered the limit of my endurance.

It's actually really nice to know what my limits are. It's the only way you can set goals, the only way you can improve. When I go to PT they always ask what my goals are for my time with them. Tomorrow I'll be able to tell them that by the end of the week I want to be able to walk farther than those two block. I want to be able to recognize my new limits, which will be farther than the ones I have now. Limits are good once you recognize that it's possible to move beyond them.

Friday, December 16, 2011

One Foot Out The Door

I'm going to be released from the hospital tomorrow and am I ever ready to go. It hasn't been nearly as bad as some of my past stays but time in a hospital is never fun.

I'm at a better starting point than I was for my past surgeries. Before surgery I was able to walk short distances without canes and long distances with them. I'm not going to try walking without canes yet, lest I damage my back so early on but I know eventually I'll have that back. I have begun walking around the floor earlier in the week, walking to the nurses station, three or four doors down from mine. Today, accompanied by my mother, I walked past the nurses station to the end of the hall, kept walking until the floor looped around; I was gone for about 15 minutes walking a total distance of about a block. I'm not yet ready for the Boston marathon but I am getting stronger.

I'm happy to report that all systems are working as they should. I written before on whether or not certain bodily functions should be social skills. This is a reminder to myself that my circumstances are changed from what they were before the accident if people are genuinly interested and concerned about certain bodily habits. But to all those who keep an eye on such things, all systems are go.

Things are going to be different tomorrow: I will not have a staff of nurses waiting on my needs, I will have to motivate myself, take care of all my needs myself or ask my parents for help, and remember to take all needed medications at their proper times. I am forced to grow up a little bit more each time I go through this. It's good for me in the end though I don't have to like it. It's time to go from the young adult turtle I started as and transform into the adult turtle I am. What this will look like I am not sure, but I can guarantee that it won't be boring. So stay tuned.

Thursday, December 15, 2011

On the Other Side

So as you can tell I made it through surgery (click the link to read what I had done to my back) in one piece. They cut me open, took me apart and put me back together again. The picture first picture is from before surgery:

and after surgery:

I've been doing pretty well. My back is achy, not surprising since I just had back surgery. Otherwise I've got very little pain with a lot of mobility. It is looking like I may be released before the weekend or just after. 

Thanks for all the well wishing that I received before the surgery since it obviously got me through. Now I just have to make through another week of physical therapy and I get released to the place I really want to be: home. 

Monday, December 12, 2011

Twas the Night Before Surgery and All Through The House Not A Creature Was Stirring Not Even A...

It is official, I'm going to be going in surgery tomorrow. I met with my surgeon and learned the details about what will be happening.

I already knew that the hardware that is in my back now, two long rods on either side of my spine, are going to be removed. In their place, the surgeon is going to put in two slightly shorter rods with thicker screws to attach it to the bone. The hope is that thicker screws will help the rods from dislodging again. To encourage the bones to heal around the screws, they will be taking a small amount of bone from my hip and using it as bone graft. The hip bone that they place in my spine will grow into any space that is left after the surgeons have done their work. If all goes well this should be my last back surgery.

The surgery should last for about 4 hours. I will be staying at Johns Hopkins for roughly around a week after the surgery. I will continue to do outpatient therapy for another week. We will be driving home the 23rd with just enough time to make it home for Christmas.

The bear sitting on a shelf in my surgeon's office.

Thank you for everyone who wished me good luck and kind wishes. Thank you for your support. Try not to worry, as I will be at the hands of one the world's finest spinal surgeons, a man who does this kind of thing every day. I've also got all my family, friends and *others behind me to help me tackle anything else that will come my way. I'll let all of know how things went from the other side.

*Others may include but are not limited to facebook friends, family friends, the people my friends and family may have told about me, the random people my mother has told my story to while shopping in the grocery story, and people who stumbled on to this website by accident.

Wednesday, December 7, 2011

The Turtle Has Come Ashore

I have less than a week until I go in for surgery on my back. By this time next week I will already be recovering, most likely with new hardware installed.

I'm not going to worry and stress my self out. Not yet at least. Even though surgery always carries serious risks, I have a giant network of support behind me. I'm so lucky to have my amazing family and friends as well as all the faceless members of the facebook mob.

The upcoming surgery will change my life in a couple of ways, one of which being I can't use the pool while I have stitches in my back. The pool is one of my favorite parts of the week, a time when I can simply float there and be completely weightless and free. Or I can goof around and move faster than I could ever hope to on land. I am a completely different animal.

I do aquatherapy once a week and as I pulled myself out of the pool I had the image of a sea turtle coming ashore to lay eggs. This is kind of like that, my temporary hiatus from the water. I have been more maneuverable on land of late than in a long time, to be sure, but I will still miss the water. I'm not gone for good but I will have to sit on the sidelines for a little bit.