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…”

Uncategorized

Five Smiles #2

Monday: For the past couple of months, I’ve felt like I’m in a bit of a rut when it comes to working out. I’ve still been going to Magee to use the stim bike, Lokomat, and Exoskeleton in the Wellness Center, but I don’t have any formal OT or PT right now. After over a year, insurance finally said it’s time to take a break (I can go back in a few months though, no need to worry). I’ve been yearning for something new so that I didn’t lose interest in working out all together. Sometimes it’s hard to stay motivated when your body isn’t showing the results you want, but I know it’s important to keep moving. I recently joined a health and wellness center that’s about 15 minutes away from my house to do some aqua therapy. I was a little reluctant at first — I always hated swimming growing up — but so far, I really like it! The nurse who works there, Tia, used to be an aqua therapist, so she’s been working with me every week and always has new exercises and stretches for me to try out. My body feels a lot lighter and less rigid in the nice, 90-degree salt water. Since there’s less gravity, I can take baby steps with my left leg and pull my right leg along to ‘walk’ a little underwater with my upper body supported by noodles. It’s awesome! I’m not going to lie though, it’s a little awkward being the only person there with a spinal cord injury, but, hey, I have to get out of my comfort zone sometimes, I guess.

Tuesday: My surgery was moved up! Yep, I’m getting surgery. It was originally scheduled for March 20, but now it’s happening on March 7 — two weeks earlier! Lately, I’ve been feeling like I’m just waiting around for it, so I’m definitely happy the surgeons snagged me an earlier spot. This will be the first of two or three surgeries I’ll be having on my arms to increase my independence. And I sure am ready for that. *Spoiler alert*: my next few posts will be taking you through this journey with me, so stay tuned!

Continue reading “Five Smiles #2”

Uncategorized

Five Smiles #1

Monday: Today I finished reading an inspiring book called Laughing at My Nightmare. It’s written by a young man named Shane Burcaw who was born with Spinal Muscular Atrophy — a disease that causes his muscles to waste away over time. He’s been in a wheelchair his entire life, but his outlook on everything is amazingly positive and he doesn’t let his condition stand in the way of being happy and productive. He travels all over the country as a public speaker, runs a non-profit organization, a blog, and a YouTube channel. He’s definitely a busy guy! I highly recommend his book. He’s about to come out with a second one as well. On his blog, he writes these Weekly Smile posts. I like them so much that I decided to ‘steal’ the idea. Hopefully, he won’t mind. This may or may not actually become a weekly thing, but anyway, here goes!

Tuesday: I recently started volunteering at a non-profit just a few miles from my house. The Barn at Spring Brook Farm provides camps and after-school programs for kids with physical and cognitive disabilities. The Barn is loaded with cute farm animals that kids can connect with and learn from. I’ve been doing some writing and helping with advertising materials for them. They also gave me access to their WordPress, so I can update their website. It feels good to have some work responsibilities again and be part of such a special organization. Click here to read about some of the amazing work being done at the Barn. Continue reading “Five Smiles #1”

Uncategorized

Christmas 2018 highlights

Merry belated Christmas everyone! I hope everyone’s holiday was filled with yummy food, fun times with friends and family, and a little R&R. Growing up, my family and I always spent Christmas visiting family in Rhode Island and Massachusettes. This year, however, was the second year we stayed home. Instead, my grandparents came down and celebrated Christmas Eve (at Longwood Gardens!) and Christmas day with us. Tonight my aunt, uncle, and two cousins are coming down for a few days. It should be a fun weekend! So now, without further ado, here are a couple of highlights from my Christmas that I wanted to share…

Christmas Eve definitely started off on the right foot at therapy in the morning. I set my personal record of 1,502 steps in the Exoskeleton! I recently started using the Exo every Monday. It’s essentially a robotic suit that helps step your legs, but it won’t step without feeling some sort of muscle activation first. I have to constantly think about weight shifting, squeezing back, and kicking out or the machine won’t go. Sounds simple, but it’s actually really hard! My therapist likes to challenge my stronger leg (lefty) by decreasing how much help the machine gives me. Sometimes it feels like I’m walking through quicksand! Good thing I got some stepping in before I ate all of the holiday treats my grandma brought later that day.

Continue reading “Christmas 2018 highlights”

Uncategorized

Road Trip 2.0

In July, my mom, my Auntie Amy, and I loaded up our giant, red wheelchair van and drove all the way to Florida. Eleven hundred miles! I was going down for a week of therapy with an SCI guru named Ken Bryant (and a little fun, too). It was a long, hot drive, but totally worth it to relax on gorgeous Clearwater Beach and float in a pool a year after my SCI. (Check out the picture below of me in a super stylish beach wheelchair). In mid-October, my mom and I embarked on our second major road trip since I’ve been in a wheelchair. This time we went somewhere not quite as warm as we headed off to see my best friend, Erin, in Chicago!

Continue reading “Road Trip 2.0”

Uncategorized

A little late, but always thankful

When I was discharged from Magee Rehabilitation Hospital in October 2017, a million questions and uncertainties raced through my mind: How long am I going to be in outpatient therapy? Will I be able to do everything I used to do? Will I be able to go back to work? When am I ever going to see my friends? This last question was important to me because, after living independently in Philly for four years, I was afraid that moving back home to the suburbs with my parents would isolate me from all of my friends. I thought everyone’s lives would move on without me. But now, after over a year of being home, I’m happy to say that hasn’t happened.

The Friday before Thanksgiving, my old roommate Brigid, who now lives in West Philly, hosted a ‘Friendsgiving.’ She lives on the second floor of one of those ancient duplexes with stairs leading up to the front door and then two flights of (very narrow) stairs leading up to her apartment. Needless to say, I was a little worried it might not work out. Luckily, I underestimated my friends’ strength and they hoisted me up the stairs Cleopatra-style while barely breaking a sweat. Phew, crisis averted. 

EBABEBDD-860A-4634-AA71-2180641AF7A2
Friendsgiving 2018 in West Philly.

Maybe it was Olivia’s tasty Thanksgiving cocktail — or seeing some college pals I hadn’t seen in a while, or the start to the holiday season — that got me feeling sappy on the way home … but I started reflecting on how thankful I am for my wonderful friends, hence this little friend appreciation post. Continue reading “A little late, but always thankful”

Uncategorized

A serious case of puppy fever

This past Sunday was the day. The day I had been waiting for for 10 weeks – puppy pick-up day! I’m not sure how I’m ever going to wait nine months if I’m pregnant — way, way in the future — when these 10 weeks felt like forever. I met this little puppy back in mid-September when she was only four days old and have been waiting (eagerly) to bring her home ever since.

I’ve always been a dog lover. When I was little, I wrote my parents a long letter persuading them to let me get our dog Hazel, a 10-year-old yellow lab: ‘Dear Mom, dogs are very holy animals. Dog is God spelled backwards!’ Well, this time it didn’t take too much convincing. Sometimes you just have to play the wheelchair card! Continue reading “A serious case of puppy fever”

Uncategorized

Little victories.

Before my spinal cord injury, it never crossed my mind whether or not a place was wheelchair accessible. Why would it? It wasn’t something that affected my life (or hardly anyone I knew). But now that I’m in a wheelchair, I have to think about it all the time. Are there stairs to get in the place? Are the tables too low? Too high? Will I be in the way? Will someone have to help me get out of my chair? Every time I go somewhere new for the first time — the dentist, the hair salon, a doctor’s office, a restaurant — it’s an adventure. And sometimes it actually gives me a bit of anxiety. Continue reading “Little victories.”