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Walk for Love 5k Fundraiser

Hi family and friends! If you’re looking for a way to give back to the community then look no further! Dr. Scott Kozin, my wonderful OT’s, and all of the folks at Shriners have been an amazing blessing to me and to children from all over the world. It is truly a special place and they never turn a patient away, regardless of their ability to pay.

Over the past year and a half, I have undergone three surgeries at Shriners. During my many months of rehab there, I met children with disabilities and their families who traveled to Shriners for specialized care from Croatia, Honduras, Belize, Newfoundland, and all over the country. I was very lucky to live nearby and that they opened their doors to me even though I was an overage patient.

Please consider a small donation as I roll to support them in their annual Walk for Love 5k fundraiser on Saturday, October 3, at the Philadelphia Zoo. To make a donation, please click HERE or search ‘Salisbury Squad’ to sponsor my team. If you are in town, feel free to register with our team and join us! Don’t forget a mask!

Thank you, everyone, for your continued support and love. Your donations mean a lot to me!

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Quarantine vibes

Happy Quarantine, everyone! I hope you all are staying safe, healthy, and sane during this crazy/scary/boring time.

For me, quarantine ‘officially’ began a little over two weeks ago. With the rapidly spreading virus, we decided it would be best to take a break from PT and OT until things calm down. Due to my SCI, I’m considered a higher risk. I don’t necessarily have a higher chance of getting sick, but if I did it might be harder for me to recover.  My injury affected my core and chest muscles, so my little baby coughs are pretty weak. I haven’t been sick since my SCI (knock on wood) and I definitely don’t want to start with the coronavirus!

On a lighter note, the dogs are loving the quarantine. With everyone home, they’re definitely getting more treats, cuddles, and walks than they would on a normal day. They are totally unaware of the scary things going on in the world right now. It must be nice to be a dog. I was looking through old photos the other day and came across a picture of Hazel, our 12-year-old yellow lab, when she was just a puppy.  So cute!

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I look funny….but at least Hazel’s cute

Since this time of year is typically the start of the baseball season, I expected the house to be quiet with just my mom and me, but it’s nice to have everyone around. Caroline has been putting her ‘therapy aid skills’ to good use helping me do some PT at home. She’s also been baking a lot — rolls, gluten-free cornbread, cake, cookies, homemade dumplings– trying to make us all gain the coronavirus 15.

Of course, quarantine is the perfect time to chill and binge-watch Netflix. Some recent shows we’ve been loving are season three of Ozark (Netflix) and Little Fires Everywhere (Hulu). We’ve also been doing some painting to pass the time. I was never very artistic before my SCI (and I’m still not now) but here are some of my recent left-handed doodles.  Mom also single-handedly completed a 1,000-piece puzzle, which you can see in the background of this photo. Way to go, Mom!

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Hopefully, within the next few weeks or months, the coronavirus will subside and life will go back to normal. I’m definitely used to staying home and laying low more now than I was before my injury, so this whole social distancing thing isn’t super new to me. I’m still itching to go out and see friends, but I guess Zoom and FaceTime will do for now.

It’s important to stay informed about everything going on, but remember it’s OK to take a break from the news and social media as well. Stay safe, healthy and…home! We will get through this together.

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A Letter to 2019

Dear 2019,

I can’t say I’m sad to see you go. You’ve been a long, challenging year — both emotionally and physically — to say the least.

You brought the loss of loved ones. I will never forget them and will cherish them in my heart forever.

You also brought sacrifice. I had three elective surgeries within about seven months. Although I knew it wouldn’t be easy, I definitely underestimated how long and frustrating my recoveries would be. Weeks in casts and splints, months of immobilizations and restrictions, and the temporary loss of independence took a lot out of me and tested my patience.

Despite the difficulty you brought, there have been happy times, too — some new physical gains, new friendships, a snazzy tattoo, volunteering, some work from home, a beach vacation, lots of family time and puppy snuggles, of course. Thank you to my family (shout out to mom!) for taking such good care of me all year long, even when I’m grumpy. And, of course, thank you to all my great doctors, PTs, and OTs.

All in all, 2019, you provided some ups and downs, but I made it through stronger than I was before. And maybe that’s all that really matters, right?

So, adios, 2019!

And here’s to you, 2020. I’m ready for ya.

– Mary

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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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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!

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”

Surgery Recovery, Uncategorized

Post-op. Update

Hello! I have a lot of updates since my last post. As you know, I had my long-awaited surgery on Thursday. I’m going to try my best to explain the surgery again. Dr. Scott Kozin from Shriners Philadelphia led a team of three surgeons. They took out the gracilis muscle, its nerves, and arteries/veins from my left leg, moved it all up into the triceps region of my right arm and attached it to the healthy supinator nerve, which runs down into my wrist. Obviously, it was more complicated than that, but we’ll stick with that. In a few months, when this all heals, I’ll be able to extend my arm (triceps) when I think about rolling my wrist over. Crazy. It will take some time to retrain my brain, for sure, but I’m up for the challenge. This is only the beginning of what Dr. Kozin plans to do. In about six months, I’ll have the surgery again, this time using my other gracilis muscle to give me biceps function.

I know this chapter in my journey is going to be hard, but it’s going to be worth it in the end. Having better arm function in my right arm is the first step in regaining some more of my independence! And I’m so ready for that.

This latest adventure started on Thursday morning. My parents and I hustled out the door to make our 6 a.m. arrival time. The team at Shriners was wide awake and ready to get started — definitely more caffeinated than I was. The first question they asked when I arrived at pre-op. was whether I wanted cupcakes, butterflies, or rainbows on my pillowcase. It’s funny being 24 at a children’s hospital! Those pillowcases are a sweet gesture to ease a kid’s nerves though — and it calmed mine a little, too. After some prep, I rolled into the operating room around 7:30 a.m. and drifted off to dream land. Anesthesia is some amazing stuff. I woke up around 5 p.m. in the ICU ward oblivious to all the amazing work that Dr. Kozin and his team had done the previous nine hours. Continue reading “Post-op. Update”

Surgery Recovery, Uncategorized

Onto my next adventure…

As I mentioned in my previous post, I’m getting surgery! It seems like I’ve been waiting forever for it to happen, but now that March 7 is only a week away, I’m starting to experience a whirlwind of emotions — I’m excited, nervous, anxious, and everything in between. Before I jump in and explain the surgery, let’s rewind and take this chapter in my journey from the top. I’ve covered a lot of hard miles to get to this point.

I’ve been dedicated to doing physical therapy for a year and a half now. I’ve seen some really good return in my left arm/hand/fingers and a bit in my left leg, but my right side is still very weak. Over the summer, I started feeling like I ‘plateaued’ in PT and in my recovery, but I was still determined to recover more function, especially in my right arm. A common misconception about people who are paralyzed is that they’re just trying to walk again. Of course, I would LOVE to walk my dog and run the Broad Street Run again someday. But honestly, I’d trade that any day to be able to put my hair in a ponytail, write with my dominant hand, and be independent again. Continue reading “Onto my next adventure…”