A few years ago, I had never even heard of Wilmington, Delaware.
But now, I wholeheartedly feel like a part of me will forever be there.
In 2014 I was burnt out, scared and losing hope that my situation was ever going to change. To say that I was sick of doctors’ appointments is an understatement.
But then one doctor in Orlando said something I hadn’t heard before from any other doctor:
“I’m not your guy. But I will find you your guy.”
And he did. Soon enough, Delaware was on my radar.
All I remember is walking through those duPont doors and feeling an overwhelming sense of peace. And when I shook Dr. Miller’s hand, I felt an instant trust.
He was the right guy.
In 2014, my world flip upside down. But for the first time in a long time, it flipped in a good way.
To Dr. Miller:
The gratitude I have for you and what you have done for me is immense. I really can’t put it into words.
When I first met you, I was scared like you wouldn’t believe. Orthopedics had failed me in major ways and I didn’t think I would be able to trust it again.
But you changed my view. You looked at me and studied my gait functionally, not structurally. You explained things in ways I understood. You smiled at me, showed me you really cared and made me feel like for the first time in years, I was going to be okay. Your confidence made me feel like relief was just around the corner.
My initial impression was right and still stands. Almost immediately after that first surgery with you in 2014, I knew I had found something special in you and in Nemours.
To put it simply, you changed my life. You handed me that pair of crutches and helped me see a future for my life that I had never thought possible.
When we decided to come back to you this summer to do the osteotomy, the surgery that had failed me previously, I was scared but strangely okay.
Because I knew in my core that you weren’t going to let anything bad happen.
You were going to give me all you had and do your best to fix my pretty crooked leg.
I’m 3 weeks post-op and in a lot of ways, I already feel better than I did before surgery.
Dr. Miller, thank you. Really. You absolutely turned my life around, not once but twice. Freshman year of college was super hard because of my physical pain. But I kept trucking because I knew we were heading your way this summer.
As I think you are for a lot of kids, you were the light at the end of the tunnel for me. What you do is incredible. And you will forever be one of my most favorite people on Earth.
To Nemours – all the nurses, therapists and rehab doctors:
I’ve been in my fair share of healthcare systems.
Nemours, you are at the top of my list.
The care I have received with you all is unmatched.
To all the nurses, you rock. Never before had I stayed in a hospital where every single nurse was always smiling. You would come in, take care of me and often stick around to talk for a while. There were so many of you, so if I named all of you that impacted my stay, I’d be here forever.
Just know you all are the best and you made my healing process a lot smoother.
To the therapists and the rehab team:
I honestly don’t know where to start.
When I checked in for inpatient rehab, I didn’t know what to expect and was pretty nervous.
But you guys have created an environment in that gym that brought me so much comfort and hope.
Thank you for pushing me to be my best and believing in me. Your confidence in me threw open doors for me. You all are a main reason I bounced back from this so fast.
The foundation I have on my recovery is because of you guys, and I couldn’t be more grateful.
The work we did was tough. But that gym was a fun, happy and healthy place to be. I was genuinely sad to say goodbye to you guys.
You changed the way I look at therapy in the hospital and I will miss you guys.
To everyone at Nemours – Dr. Miller, the nurses, therapists and rehab doctors:
You guys have created an environment that was hard to leave. I left with a lump in my throat because I felt like I was saying goodbye to a bunch of new friends I had made.
I will forever love Wilmington, Delaware and will forever owe Nemours A.I. duPont everything.
My dream is to be a Sports Journalist. With CP, that could sound like a weird one because I’ve never actually played sports in my life.
But Dr. Miller and everyone that helped me at Nemours are the reason I’m on my forearm crutches and able to be independent in college.
All my dreams are coming true. And I owe so much of it to Nemours.
You absolutely changed my life.
When I’m hopefully writing for ESPN one day, know that the smile on my face and the words I’m writing are largely because of one incredible team of doctors, a life-changing hospital, the happiest hospital rehab gym I ever did see and the best hospital staff out there.
Thank you. I’ll remember you guys forever.
Flight = booked.
We’re blown away and thankful.
Why? Because originally, we thought I’d be here a full month recovering.
I’ve been very blessed with an amazingly fast kick start to my recovery.
So, we’ll be FL bound by the end of next week.
Another surgery, 4 gnarly new scars and 3 weeks later, we’re out of here.
One more week to go. Insane.
This crazy ride isn't over, but thankfully it's about to hit home turf.
See you in about a week, Otown.
It’s definitely been a tougher week.
Farther into rehab, it’s getting harder. As I use my leg more and in brand new ways, muscles I’ve never fired before are learning how to work and I’m faced with some new pains.
But on the other hand, I’ve been very blessed to not be in nearly as much pain as I was last time I had this surgery. I think all of us in the Ellis Clan can attest to the fact that this time around is 100x better.
This rehab process is new and long to us. We’ve never stayed inpatient for an extended period of time before.
Mom and I have our hospital life down to a routine though.
Each day, I go through 3 hours of therapy. 2 hours of PT and 1 hour of OT. We fill our in between time with lunch, naps and lots of card games of War.
This much therapy in one day is something I haven’t experienced in a long time so it’s an adjustment, especially since I’m still getting used to my “new” leg.
I’ve said this before, but this surgery is definitely more of a mental battle for me because I’ve been down this road before and it wasn’t pretty.
As the swelling has gone down, I am starting to feel my newly straight leg and the metal rod that’s now placed in there. Part of me keeps remembering the nightmare that was last time.
I have to tell myself daily that I’m in way better hands and my outcome is already vastly different and better.
The first two days after surgery, I think I asked my mom and dad 1,000 times: “It’s actually straight this time, right?”
Now seeing that it is, comfort and excitement is slowly filling me up.
I keep joking that I’m bionic again and all my nurses joke that us CP kids have pain thresholds that they can’t even imagine.
I may have a high pain threshold, but I can't look at my scars yet.
I thank Jesus for my high pain tolerance daily but he definitely didn’t give me the stomach for dried blood and bruising.
But once they’re cleaned up, I will be taking cool scar story suggestions.
My motto is every scar needs a good story.
For example, there’s one on my foot that my brother and I decided looks like a shark bite.
Thus, we tell everyone that I got it fighting off a Great White in the ocean. What do you mean it’s from orthopedic surgery?
I’ll end this post with some comic relief.
Get this image in your brain:
Mom is pushing me in my wheelchair down the hall, I’m holding my afternoon cup of coffee. Two nurses are coming towards us and another one coming down the hall to our right. Naturally, as one of them was my nurse today, we stop to talk to them.
Well, I guess Mom had a momentary brain lapse and thought that the levers on the wheelchair handles that recline the back of my seat, are brakes.
She presses them and I go flying backwards, my coffee goes up in the air.
Soon enough, we all can’t stop laughing and the nurse coming from the right says: “You should’ve seen that from my angle!”
One day and one spilt coffee at a time, we’re getting through this.
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.
Week 1, down.
It’s hard to fathom that just a week ago, I was nervously walking into Nemours by 9am, crooked femur and all and in the O.R. by 12pm.
In one week, I’ve met more people than I can count, tried to make a granny style walker look cool, re-mastered the art of manual wheelchairs (and the art of convincing people to push me), watched lots of baseball (but what’s new) and with 3 hours of rehab a day, I’ve pretty much never been so exhausted in my life.
As I talk to more people, patients and employees included, I realize more and more how remarkable my medical team and this place actually is.
I get lots of surprised reactions when I say I’m from Florida or when people see my excessive Gator Gear.
But, when I say I came for Dr. Miller, it’s like a lightbulb goes off in their head, they’re faces relax and it all makes sense.
“He’s kinda world renown,” one PT told me. “People come from all over for him.”
Maybe the coolest thing to me though, is that right now on 3West, there’s 3 of us (2 of us from FL) that Dr. Miller operated on, who are all in college. And I’m pretty sure he operated on all of us on the same day too.
The thing about this life in the world of medical challenges, is that it can be isolating.
Not everyone understands or knows how to react to any of us.
Cancer patient, CP kid, whatever it is, sometimes it feels like we’re human curveballs to people and nobody knows what to do with us.
So, when you meet kids who are going through the same things you are, it’s special.
All 3 of us college kids have broken femurs right now. I actually think I’m the only one of us with only one femur broken.
Pretty sure Dr. Miller is the only person that can make you happy to have a broken leg.
We pass each other in the gym and live just down the hall from each other.
And though we haven’t talked extensively with one another yet, I have rarely met other kids with CP, let alone ones going through the same surgery at the exact same time as me.
I know that the Florida moms are planning to squad up soon.
This experience is super hard. But there are parts of it that are really cool.
We get our therapy schedules knocked down to an hour and a half a day on the weekends and have this Monday off for the holiday.
Though therapy is hard, it gives me something to do while being here. So it’ll be interesting to see how this weekend plays out with less to do.
I’ve been on a roll with playing people in iMessage games, so if you’re up for some competition, feel free to blow up my iMessage.
Because despite popular belief, one can watch too much Netflix.
To everyone who has sent us things and kept us in your prayers, truly thank you from the bottom of our hearts.
Like I’ve said a million times before, but I really really mean it, all the support and prayers mean the world to us. Really. We wouldn’t be here without it.
“Just as our bodies have many parts and each part has a special function, so it is with Christ’s body. We are many parts of one body, and we all belong to each other.”
If there’s one thing that my 19 years on this earth have taught me, it’s that life is a constant whirlwind, full of surprises, rarely stopping.
Welcome to 3West, the place that my current whirlwind is circling.
3West is the floor of Nemours A.I. DuPont Children’s Hospital that I have lived on since Friday, May 19th, 2017 and will continue to until my rehab team has officially kicked my butt and I’m ready to fly back home to Orlando, FL.
I won’t bore you with the extensive details of my entire journey, I’ll just hit ya with the quick synopsis.
I graced the world with my presence 9 weeks early and my mom will never let me live down the fact that I didn’t give her time for an epidural (emphasized sarcasm on the word “graced”.) At birth, I was diagnosed with Hydrocephalus and at about the age of 2, Cerebral Palsy got added to my medical chart.
My journey of surgeries began pretty much at birth, as a shunt was placed in my head to control my Hydrocephalus. I have since had a series of orthopedic, neurological and eye surgeries to bring my grand total to 10 surgeries.
But this chapter, the chapter that fired up this blog, starts in my home state of Florida (Go Gators) and moves into Delaware.
It starts back in 7th grade, when my world flipped completely upside down. I underwent a left femoral and tibial osteotomy. Which basically means they broke my femur, turned it out and then broke my tibia and turned it in, in an attempt to make my leg straight.
But nothing went as planned.
My femur was over-rotated 7 degrees and I woke up, riding recovery into a worse state than I was in before surgery.
Fast forward to 10th grade, I’m living in more pain than ever and we knew that it was time to go on a wild doctor hunt to find the guy to do surgery number 9. Long story short, a neighbor on a plane ride gave my dad the recommendation to go to the head of Florida Hospital’s Trauma Department.
A 2 hour appointment with Dr. Cole (the recommended doctor), brought a honest confession that he wasn't our guy, but a promise to find me the right doctor.
One day later, he called back. He told us to take our pick: a doctor in Delaware or a doctor in Australia.
We obviously grabbed Delaware.
A little bit later, we were walking through the doors of A.I. DuPont to meet the man we now love and owe so much to, Dr. Freeman Miller.
We soon decided to allow him to operate on my feet, it hopes my gait would improve, despite my still crooked femur.
All our hopes came true and I recovered fully, transitioning to crutches for the first time in my life.
A few more years later, I’m still hanging in there. But my out of line femur is increasingly causing pain and frustration. So, in amidst college tours during my senior year of high school, we headed back to our hero, Dr. Miller.
He promised he would fix my femur, but he wanted me to get through my freshman year of college first to confirm that I want to walk the road of a broken femur with a rod in it again.
Now step into more recent times, the middle of my freshman year at UF. My leg is shooting with pain and I knew exactly where I was heading this summer.
I was heading to Delaware. To Nemours again, searching for more healing and hope.
And now we’re caught up and live. 6 days post-op, my femur is straight.
For the first time in my life.
Overjoyed and hopeful are understatements.
Rehab started yesterday, and it was long. But writing is what helps me clear my head. And as I’ve traveled this road my entire life, the Lord has taught me the importance of sharing our stories so his glory can shine through.
His glory is shining in 3West of Nemours, folks.
Because none of this is my doing. It’s all Him. And I’m beyond thankful.
Welcome to my journey. Welcome to the blog that will come to you live “From 3West”.
I’m excited to see what the Lord reveals to me through this process.
To all the kids who join me in the bubble of medical challenges: this is your story too. My deepest desire is that From 3West, we can find hope in our bubble of uncertainty.
Here goes nothing.