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My Tendon Transfer Experience

Happy fall, everyone!

I can’t believe summer is over and the holidays are right around the corner. It’s been a while since I’ve given an update on my progress. To be honest, it’s been a long, challenging two months but good things are happening. Here’s a little glimpse into what I’ve been up to:

On August 22, I had surgery on my left arm. Before my SCI, it was my nondominant arm, but since then I’ve had to rely on it for everything because my right arm is really weak. I was really torn about having the surgery because I knew it meant giving up my arm for a couple of months. But after talking to several people who had it done and doing a lot of research, I decided to go for it. Sometimes you have to take one step backward to take two steps forward, right?

My left arm worked pretty well and I was independent in a lot of things before the surgery, but my left triceps was absolutely nonexistent. If I was lying in bed and reached up, my arm would fall and smack me in the face. Let me tell you, it’s not fun (and that’s just one example). Dr. K and Justine and Sarah, my awesome OTs at Shriners, decided I would be a good candidate for biceps- to- triceps tendon transfer surgery.

Basically, you have three different muscles in your arm that work together to flex your arm up towards your face — the brachialis, brachioradialis, and the biceps. Turns out you don’t need all three muscles to still be able to feed yourself, brush your teeth, and do everything else that requires elbow flexion. It’s pretty genius that our bodies come with all these spare parts — the gracilis, biceps, appendix, etc. During the surgery, the biceps brachii are snipped and wrapped around the elbow to act as triceps.

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After surgery, my arm was in a straight cast for a week. My friend Erin drew a cute picture of a wiener dog on it. Very fashionable. Since then, it’s been in a brace so it can’t bend past the allowed range and I’ve been going to Shriners for OT almost every day. The biceps are used for flexion, so I am in the process of retraining my brain to use them for extension. It’s actually really hard! It takes a lot of patience and practice during OT, but I’m starting to get a hang of it.

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Right now, I’m allowed to bend my arm to 90 degrees and I’ll get the brace off soon. I’m super excited about that. I will finally start to work on strengthening it back up and using it to do things independently again. Thank God for that because Dad is a terrible teeth brusher and Mom needs to work on her makeup skills.

Another exciting development is that the gracilis in my right arm is finally coming alive. It’s not strong enough to make much movement yet, but the whole muscle contracts now! It’s a start. The doctors from Shriners and Penn seem very excited and optimistic that it will continue to strengthen over the next 18 months.

This whole process has been a test of my patience and at times has been a little scary. But with every new movement I know I’m headed in the right direction.

Until next time! Thank you for reading.

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Thank you!

Thank you so much to everyone who supported my family’s team for Shriners Hospital’s Walk for Love fundraiser! With your generosity, we were able to surpass our goal and raise nearly $4,000 — incredible. I know your contributions will go a long way to help kids with all sorts of disabilities reach their potential.

The Walk on Saturday was a really great time! It was a beautiful, brisk fall morning. Some of my family from Rhode Island, friends from Temple, and friends from Magee came out to support me and walk with us. Even Willow came! She definitely won the award for the tiniest dog there — and cutest (in my opinion). It really meant a lot to me to have everyone there.

Thank you again!

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Salisbury Squad! Of course, my eyes were closed in every picture.
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Walk (and roll) for Love

Family and friends — I need your help! As many of you know, I’ve been busy having some surgeries these past few months. When I didn’t know where else to turn, Shriners Hospitals for Children in Philadelphia opened their doors to me as an overage patient. Dr. Scott Kozin and all of the folks at Shriners have been an amazing blessing to me and to children from all over the world.

Please consider a small donation as I roll to support them in their Walk for Love fundraiser on October 5. To make a donation, please click Salisbury Squad to sponsor my team.

Thank you, everyone, for your continued support and love. Your donations mean a lot to me!ac5d1ff0-555f-11e9-b2d0-0e2d7346e36a.jpg

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Five Smiles #3

Before I jump in, I’d like to say thank you for all of the birthday wishes on my previous post. I’m still in denial that I’m actually 25, but I had a great birthday! I went out with some friends in Philly to celebrate on the 3rd, had a delicious gluten-free cake with my family at home on the 4th, and wrapped up the celebration visiting my Grandma and Uncle John in Massachusetts on the 5th. It’s safe to say 25 is off to a good start.

1) I had an abdominal surgery about a month ago and today was my follow-up with my doctor at Jefferson. He said that everything looked great! I’m only a month out from the surgery, but I’m incredibly happy with the results so far.

2) Do you remember when I wrote in a previous post that I thought my van would spontaneously combust one day? Well, I was right. I want to preface story this by saying that everyone is fine and after three days at the auto shop, the van is home, happy and healthy (at least for now). Anyway, my mom went into the Gap to buy a gift card and I decided to wait in the car. All of a sudden the car made a weird noise and white smoke started pouring out of the front of the car. I could feel a panic attack brewing. So, I followed my first instinct, called my mom and shouted: “Mom the car is on fire!” My mom sprinted out of the store, turned the car off and immediately got on the phone to the car mechanic. Long story short, we were stranded in the Gap shopping center for almost three hours as the car was towed and we waited for a wheelchair-accessible transport to take us home. It was a bit of an inconvenience for sure, but in the end, wasn’t so bad. We got açai bowls while we waited, had some nice conversation with the lovely people who drove us home, and the car problem ended up not being too serious. Phew.

3) Willow has been extra cute lately so here are some recent pictures of her enjoying summer. Dad brought her home this funny doormat from his work trip to Arizona. She loves trying to steal Dad’s fresh-picked veggies off the back porch. Green beans are her favorite. It’s crazy to think that she will be a year old next month. They grow up so fast!

4) My dad found a cute little brunch spot in Wilmington called the Bellefonte Cafe and we all went over the weekend. Despite the heat, it was nice to relax on the patio and be with everybody. My sisters are both going back to school next week so it’s going to get pretty quiet around my house.

5) I have another surgery tomorrow! This is the last one that is currently scheduled. I’m having a biceps-to-triceps tendon transfer on my left arm, which is my stronger arm. Basically, they just take a piece of your biceps and flip it into your triceps. After some occupational therapy, I’ll be able to push off of surfaces easier, reach overhead without my arm falling and smacking me in the face, etc. It’s a pretty routine surgery, but out of all the surgeries I’ve done so far this one is definitely giving me the most anxiety. The looming loss of independence for a couple months during recovery is nerve-wracking. However, I’ve talked to a lot of people who’ve had it done and they say the new strength you gain is absolutely worth it. So, here goes nothing!

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Feelin’ GLAHM

On Friday, I attended GLAHM Camp at Shriners Hospital in Philly. GLAHM Camp, which stands for Good Life and Healthy Minds, is an annual, day-long camp for teenage girls with spinal cord injuries. I was really touched that they asked me to participate even though I am a bit on the older side — 25 this week … yikes!

It was a jampacked day filled with healthy cooking (my hand got a serious workout chopping tomatoes), working out with a physical therapist, talking about all things SCI-related, and learning a Rollettes-inspired dance. The Rollettes are a wheelchair dance team that aims to “empower women with disabilities to live boundlessly and shift perspectives through dance.” I can’t say I was the best dancer of the bunch, but it definitely got me out of my comfort zone!

A guest speaker named Bryn came and talked to us about mental health, which, of course, is extremely important. She’s been injured for a long time, lives in Philly, and is my age, so we swapped numbers. I feel like I could learn a lot from her and always love making new connections!

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Having a spinal cord injury is obviously tough at any age but can be really hard for young adults wanting to be free and independent like their able-bodied friends. During some downtime at the event, the girls and I talked about accessibility issues at their schools, their problems in gym class, and the possible struggles they might face when they go off to college, especially since some colleges are cutting funding and not providing aides anymore. Even though they were younger, most of the girls had been injured much longer than me. It opened my eyes to all of the challenges teenagers face growing up and going through school with a disability. All of the little things I never thought of back then (but now have to) — Is there an elevator close by in case of a fire drill? Is the handicapped bathroom stall big enough for my wheelchair? — are looming in the back of their minds while trying to learn trigonometry. That can’t be easy.

Despite the adversity they face, the girls I had the privilege of meeting all have big dreams and they don’t let their wheelchairs hold them back. I learned a lot from my new friends and found each one of them inspiring. Their spirits reinforced to me that anything is possible, even if you’re in a wheelchair.

Shriners also holds another camp for young adults that deals with getting out into the community and becoming independent again in the spring. I’m all about that — so sign me up!

Unfortunately, I couldn’t stick around GLAHM Camp for makeovers and dinner, but it was a really fulfilling day and an awesome event for girls with spinal cord injuries to come together.

Thank you for including me, Shriners!

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Two years

Today is the two-year anniversary of my spinal cord injury and I’m feeling all the feels — nostalgic, mopey, scared, but also thankful. I wasn’t going to write anything today because I thought it would make me depressed, but I’m trying to look on the bright side (and sometimes writing helps).

Looking back, I thought I had it all figured out. But God had a different plan for me and I know I’ll be OK. I can feel real progress being made. I have a surgery tomorrow that is going to drastically increase my independence, and I’m finally starting to feel some twitches in triceps! It feels empowering that I’m taking my recovery into my own hands. I’m two years stronger than I’ve ever been before and I’m full of hope. Thank you, as always, for your support.

Until next time,

Mary (and Willow)

Willow loves the camera.
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Summer reflections

The past month or so has been busy, busy, busy and I have many updates to share with you all. But first, here’s a funny story from our recent family trip to Hilton Head, South Carolina about a month ago. After nine hours of all of us driving in the van — cramped and up to our ears in bags, suitcases, and an extra wheelchair — we were all so relieved to have made it to our sunny destination. Personally, I was just relieved that we made it all the way there without killing each other! Just kidding.

So, we parked the car and the fam hopped out one by one. My Mom went to open the passenger side door where the wheelchair ramp is and it wouldn’t budge. I was stuck. ‘Oh, fantastic!’ I thought. I suddenly found myself struck with anxiety and claustrophobia. I needed some fresh air. Luckily, we found a nearby mechanic who fixed us up and freed me, however, I’m fairly certain the van is cursed. My friend Alex and I were going out for dinner the other day and the door nearly fell off! One of these days this van is going to spontaneously combust or something.

Aside from some initial car trouble, we had a really nice time. This was actually the first family vacation we’ve all taken together in a long time. We were supposed to go down to the Outer Banks in North Carolina about two years ago, but yours truly messed that one up by having a stroke. Oops. The whole resort in Hilton Head was extremely accessible. There were even a couple nearby beaches equipped with beach mats, so I could roll right down to the shoreline. Here’s a picture of us during one of the many unsuccessful, mother-forced photoshoots. It was pretty windy.

Continue reading “Summer reflections”

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A very special day

Today, I just wanted to drop by and give a little shoutout to a very special person in my life. Happy birthday Mom! I’m forever grateful for everything you do for me every day. We’ve been through a lot together in the past (almost) two years and it’s brought us closer than I ever could have imagined — maybe sometimes a little too close, but there’s no one else I’d rather be doing this adventure called life with. I love you, Mom. Happy birthday!

Surgery Recovery, Uncategorized

Adios, cast!

On Wednesday, I had my six-week checkup at Shriners. The place was hopping; Dr. K had just gotten back from doing some mission work with kids in Ethiopia, so everyone was eager to see him — especially me! I couldn’t wait to get my cast off. I had been wondering, with a mixture of anxiety and excitement, what was going on under there and how my arm would look.

Dr. K and his orthopedic team started off by draining my leg — I’ll spare you those lovely details. Then they got to work removing my cast. I’ve never broken a bone or had any reason to be in a cast before, so I wasn’t sure what to expect. The saw they used was pretty cool. Even though it sounded terrifying and cut through the fiberglass cast with ease, the blade couldn’t cut you if it hit your skin. Medical gadgets are pretty amazing.

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The big reveal!

I was worried about it possibly being moldy and gross under the cast, but Dr. K said everything looked great and was headed in the right direction. The incisions are healing up nicely and the new flap on my triceps (where the new muscle and nerves are) appears healthy. Yay! Good news. My arm may not be the prettiest anymore — there are quite a few scars — but, oh well, it’s worth it. And it’s just nice to be able to see my arm again! Continue reading “Adios, cast!”

Surgery Recovery, Uncategorized

In the waiting

Today marks six weeks post-op. — high time for a mini update! Day by day, it feels like my recovery is dragging on slowly, but at the same time, I can’t believe it’s already been six weeks.  Since my arm and leg are still healing, I haven’t been able to do any PT or weight bearing of any kind on my arm. It’s felt weird not going to therapy. I miss my Magee family! It’s hard to feel like I’m losing some of the strength I had worked so hard to gain in PT. But I try to remind myself that sometimes you have to take a little step backward to move forward.

This time next week my cast will be off! Wednesday, April 24 is the day. The plan (that I know of) is for Dr. Kozin to remove the cast on my right arm and replace it with some sort of brace. I’m not sure what the restrictions will be with that yet — so stay tuned. There may or may not be any new triceps movement just yet. Like I’ve said before, nerves are lazy. They take a little while to wake up and introduce themselves to one anotherBut I’m feeling all kinds of tingles! I’m going to take that as a good sign. Dr. K is also going to drain my left leg next Wednesday. I have developed some excess fluid where they took the gracilis out. It’s nothing harmful, but better to get rid of.

Even though my recovery will be far from over — remember, I’m having part two of this surgery again in six months — I’m excited for this next step and my possibilities in the future. Continue reading “In the waiting”