Trip 32 to Greenville, South Carolina, and to Shriners Children’s Greenville is in the books.
And to be frank, I’m still recovering from it. (Which also explains why it took me well over a week to get this posted.)
Going into this trip, I didn’t really know what to expect. I had exactly two solid facts in my head: Harrison was getting his casts off, and we were going to be there for the week. Monday through Friday. That was it. Everything else felt like a big question mark.
What I didn’t expect was how exhausted I’d be by the end of the week.
And I definitely didn’t expect the week to sit on my chest the way it did, heavy, lingering, like it followed me home and unpacked its bag.
So… let’s break it down.
Monday: Cast Off, Reality On
We had a slow, silly morning because we knew it was going to be a long afternoon.
Once we got to Shriners, we jumped right into cast removal. That part can be very overwhelming for Harrison, but the cast techs were fast, and honestly, that speed matters. There’s no “gentle” way to make your kid enjoy a saw near his legs, so being efficient is its own kind of kindness.
The Buttons
And then, right out of the gate, we got hit with a surprise none of us saw coming.
As the casts were being cut off, buttons fell out.
Literal buttons.
We learned, in real-time, that Dr. Hyer used buttons to anchor the tendons she moved, and we got to keep them. One of those “you can’t make this stuff up” moments. We’ve seen a lot in the last almost-five years, but I still wasn’t prepared for the sentence, “Yes, those are the buttons from his feet.”
But at this point? Harrison surprises us in one way or another so consistently that it’s basically part of the routine. Like, sure. Of course, there were buttons. Why wouldn’t there be buttons?
Quick sidebar on “the buttons.”
So, when we say ‘buttons,’ we really do mean buttons. What we found wasn’t some random thing that ended up in the cast. It’s actually a fixation device surgeons use in certain foot procedures. So when Dr. Hyer’s surgery notes mentioned that she reconfigured a key tendon (tibialis anterior) and re-routed it through the foot with a button on the sole. She literally meant a button!
That button basically acts like an “outside anchor” that helps keep things stable while the cast does its job. It’s weird to see in real life, especially when it clatters onto the floor, but it’s an intentional part of the repair, and it comes out when the cast comes off.
After cast removal, we rolled straight into X-rays. One of those things that sounds simple until you’ve done it with a wiggly kid a hundred times. But we made quick work of it and didn’t need any reshoots, which is basically a holiday in our world.
Then we saw Dr. Hyer, and the visit was short, but in the best way. She was happy. Happy with his legs, happy with his strength, happy with the results.
And one of the most underrated things about her is the way she talks to Harrison, like he’s a person. Not a chart. Not a case. A person.
She was telling him how in her line of work, every kid has a threshold. A ceiling. A point you’re striving to reach.
And then she looked at Harrison and to us, basically said: She has no idea where his ceiling is.
She doesn’t know where it ends for him.
The sky is the limit.
Harrison continues to disprove things. Continues to be the boy who makes no sense. And now he’s the boy with an unknown ceiling.
That’s… reassuring.
Because for all the guilt and all the struggle and all the moments that feel like you’re making your kid suffer in the name of “the long game,” it helps when an AMC specialist, someone who sees hundreds and thousands of kids, sits there and tells you she genuinely doesn’t know how far your kid might go.
It doesn’t erase the weight.
But it lifts you up just enough to breathe again.
She’s an amazing doctor, and we love working with her.
And because Mondays like this don’t just come with one big thing, we still had another stop.
New Braces
We headed to POPS to pick up Harrison’s braces.
For the first time ever, we have KAFOs (knee-ankle-foot orthotics) along with his AFOs. These KAFOs keep his legs extended to maintain the stretch and protect this brand-new position we’ve gained for the first time as he learns to walk again. The long-term goal is to get him back to AFOs during the day and use KAFOs at night. But for now, they’re part of the “new normal” we’re learning to live inside of.
Our spirited son has not been the biggest fan.
Somewhere in the middle of all that moving around, between casts, X-rays, POPs, seeing Dr. Hyer, and the general shuffle of a Shriners Monday, we had a little pocket of downtime. One of the cast techs came in to check on us and check on Harrison, and during this time, he handed Harrison a stuffed dino.
Appropriately…it was a green stuffed dino.
That thing became Harrison’s buddy for the rest of the week.
He also asked how long we’d be in town, and in the kind of casual small talk that turns into a surprise bright spot later, he told us we should check out a place called Windy City Burgers.
Bare Legs
Finally, after a long afternoon at Shriners, we made it back to the hotel and did the thing we’d been waiting for: a real bath.
Harrison had a long soak while we peeled off bandages, gently cleaned him up, and worked through six weeks’ worth of dead skin and built-up “cast life.” Washcloth baths get the job done, but there’s nothing like the squeaky clean of an actual bath.
And that’s when the bigger reality set in.
His legs.
Bare. Clean. No plaster. No padding. No “we’ll see later.” Just… there.
And I saw the scars.
Twelve new incisions across his legs…plus the two button sites on the soles of his feet.
I knew he’d have scars. I’m not naive. Surgery comes with incisions, and incisions come with scars. I understood that in my head.
But seeing it with your eyes is different.
Seeing your kid’s legs looking like patchwork, like this map of little stitched-up reminders, and knowing you chose this path for him…I’m going to be honest: it hit me hard.
I carried some weight after his surgery already. Watching him miserable, uncomfortable, in pain, stuck in casts… that does something to you. But seeing his legs out of the casts, seeing all of those scars at once?
The guilt didn’t just show up. It came crashing down like a wave, three times heavier than before.
And it’s lingered.
I carry a lot of guilt with Harrison. That’s not new. But this one got added to the pile in a big way. Just standing there, looking at his legs…it was heavy.
The Other Side of the Weight
But here’s the thing.
With that guilt comes the other side, and it’s the part that keeps me from getting swallowed by the first one.
Because I can look at my son’s bare legs…and they’re straight.
Straight.
That sentence still doesn’t feel real coming out of my mouth sometimes.
His feet can rest flat on a surface.
Two visuals that, a year ago, would’ve felt like pipe dreams. Like sci-fi optimism. Like something you let yourself hope for but never fully picture because it feels too dangerous to believe in.
I don’t think I ever allowed myself to imagine what it would actually look like if his legs ever looked like they do right now.
And now…here we are.
I’m going to include a picture at the bottom of this post, his first pair of green casts from forever ago, sitting next to this latest set. The size difference is mind-boggling. It’s hard to wrap my head around the fact that he used to be that little.
But even more than that…I remember thinking it was wild that his legs were even in casts at two months old. Serial casting. Working on his feet, ankles, and knees. Back then, that alone felt unbelievable.
Fast forward four and a half years, and somehow…this kid’s legs are straight.
Monday was for emotions. Because honestly, the rest of the week didn’t leave much room to feel anything without getting interrupted by the next thing.
And that was the pivot point.
This next chapter, finding our stride, had officially started
Tuesday: Evaluations, Wheelchair Freedom, and a Burger Worth Mentioning
Tuesday started in the therapy department with evaluations and setting goals for the week.
Harrison is notoriously punky to therapists, so he didn’t exactly show off during PT. If you’ve seen the side-eye photo…that tells you everything you need to know.
But in the most Harrison way possible, during a quick break between appointments, he decided that solo standing was easy peasy. Thankfully, we got the PT’s attention, and she basically spied on him from afar, because nothing is more on-brand than refusing to perform on command and then showing off the second you think no one’s watching.
OT went about how you’d expect once he got comfortable: he stood in front of the mirror, checking himself out.
We also got a visit from the therapy dogs that occasionally visit Shriners, which was one of those small “okay, I can breathe again” moments in the middle of a busy day. (Also made me tear up for the second day in a row, as it caused me to miss Penny)
Now, layered into all of this was something we’ve kind of assumed for the past few years, a leg length discrepancy. After surgery, with his legs straight and positioned as they are now, it was confirmed, about a 2 cm difference between his left and right legs.
And that introduces a whole new set of variables when you’re learning to walk again, especially in braces, especially with legs that are finally straight. Working with that discrepancy became part of the therapy focus for the week.
After therapy, we made a quick pit stop at POPS to check the braces and ask questions, because being five hours away means you want to make sure you get the fit “just” right.
And then we did something, while not shocking to anyone paying attention, is still something that we don’t always manage to do during these trips:
We went out.
This was our only real afternoon to explore, so we made the most of it. We took Harrison out in his new manual wheelchair for the first time, and it can be said without exaggeration: it was amazing.
He loved it. Wind in his face, sitting up, feeling like he could actually see the world. And not for nothing, Mom and Dad’s arms and backs appreciated the break too.
We have the chair as a tool. Harrison will always be encouraged to stand, walk, and do what he can. But reality is reality: he’s going to tire quicker than a typical kid. There will be times when a wheelchair makes life easier and more accessible for him. And honestly? It made life easier on our bodies, too.
While we were trying out the new wheelchair, walking in downtown Greenville, we tried the place the cast tech recommended on Monday: Windy City Burgers.
Yeah…let’s just say it.
I don’t always talk about eateries in these posts. This one was worthy of the stop and the mention.
Burgers were great. The fries were great. Harrison was in heaven with a giant Texas toast grilled cheese. The staff was ridiculously friendly. We sat outside, even with the wind, because it just felt good to be out in the air and not trapped inside the loop of appointments.
We grabbed donuts from Scout’s Doughnuts afterward (Biscoff, chai buttercream, salty chocolate – legit). We also checked out a few stores, including popping back in at O.P. Taylor’s Toy Store, which, ironically, we last visited the last time Harrison had intensive therapy after cast removals. We then headed back to the hotel for carb-overload naps.
Tuesday was a needed break. A little levity. A chance to breathe.
Wednesday: Adjustments, Wrist Splints, and Bagel-Fueled Progress
Wednesday was one of those days when we barely took photos because we were just busy.
A big chunk of the day was spent making sure the braces fit perfectly and figuring out adjustments that would give Harrison the best support.
We had OT working on new wrist splints, then PT brainstorming brace tweaks, and a quick orthopedics visit mixed in. It was one of those “if we can dial this in now, it saves us headaches later” days, and because we’re so far from Greenville, that matters.
Harrison also proceeded to start crushing goals.
He hit his 20-second standing goal, and his PT stopped counting after a couple of minutes. He blew past his goal of 10 assisted steps by hitting 14 and casually threw in a few solo steps like he was proving a point.
All success can be attributed to his one true love:
Bagels.
Thursday: LiteGait, Classmates, and a Last Night Under the Lights
Thursday was another full day. PT, OT, FaceTime with Harrison’s classmates, swimming, and then a night out that honestly felt like a gift after how heavy the week had been.
OT was spent continuing work on his wrist splints, and measuring him to order an additional type of splint.
He also worked with a different PT for both sessions. (And yes, this kid was knocking out two PT sessions a day during this trip.) Both sessions were focused on Harrison’s walking and gait, and trying to find the best solution for him with the leg discrepancy.
The uniqueness of this day was that both sessions used a LiteGait system, a harness that supported Harrison from above. It let his therapist control how much weight he was putting on his feet, while really watching what his gait was doing.
At first, Harrison didn’t quite know what to do with it. But once he figured it out and got comfortable, he started moving. By the end of that second PT session, he was walking around the therapy room.
Never underestimate the amount of work this boy puts in. Thursday was proof.
The highlight of the day, though, was FaceTiming with his classmates in between therapy sessions. Harrison had been off for Christmas break, and the first week back to school was the week we were in Greenville. He hadn’t seen his friends for three weeks.
Watching his face light up when he saw his classmates, his teachers, everyone telling him hi, it got me. I’m not going to pretend it didn’t. So yes, I teared up for the third time in four days.
After Shriners, we went back to the hotel for the afternoon, and checked off another thing we had on our list to do after the casts came off: swimming.
To the surprise of no one, our boy was thrilled to be back in what is proving to be one of his favorite places: the water. Being able to enjoy the pool (and maybe the spa for a few quick minutes) proved to be a highlight for Harrison. Being able to kick and splash again clearly made him happy. He felt so good being back in the water; he even tried standing on the steps, on his own. Getting a feel for these knees in a whole new way, and especially his feet, which now stood flat against the top of the step.
It definitely brought excitement to get back to swim lessons in the near future.
We spent our last night in South Carolina with pizza, cannolis, football, and dancing under the lights at Bridgeway Station.
Bridgeway Station is one of those places that feels a little surreal the first time you’re there, especially at night. It’s not just “a place to grab food.” The whole area is built to feel like a small European town dropped into Greenville, with stone facades, archways, and towers, and I only knew half of it because I kept stopping to read the plaques.
I got a kick out of the Saint Peter’s Square inspiration in the middle of all of it, while a giant TV screen was blasting college football. Italy vibes, Greenville history, pizza, cannolis, and football, all in the same place, in the nighttime air, under the lights.
It was busy, but it was wonderful.
The kind of night that reminds you your kid is still your kid in the middle of all of this. Not just a schedule. Not just a plan. Not just a list of goals.
Friday: One More Milestone, Then Home
It might’ve been the last day of the week, but the work wasn’t done.
Friday started with another visit to X-ray, this time to see what everything looked like while Harrison stood with a small lift under his right foot. After all the adjustments and therapy work, the question was still hanging there. Does he need a lift to compensate for the leg discrepancy?
We wanted his new spine doctor to be able to look at him standing and weigh in. We don’t meet her until April, but taking the X-rays now means she can see what we’re seeing and help guide the next move.
And while Monday’s X-rays were smooth, Friday’s were a whole different level.
This was the first time Harrison had X-rays taken where we didn’t have to assist at all.
That’s right. After countless X-rays, lying down, sitting, and standing, where Mom and Dad have always been part of the process, this time, he did it completely on his own. Standing up. Standing still. Handling it.
After the X-ray, we had our final OT appointment. The focus was on methods, tools, and strategies to help Harrison do things more independently. Getting clothes on and off, day-to-day skills, and those little battles that add up to freedom over time.
Then came the final PT appointment. We checked off a few more goals and landed on the decision that we won’t make shoe adjustments right now. A lift changed his stance too much and put an unwanted strain on the curve in his spine. So for the moment, we leave it alone and keep building the foundation.
Of course, Harrison was determined (to get home) and showed the PT that her goals were a bit undercooked for his liking. She quit timing him again because standing just wasn’t the challenge she expected it to be.
It took some coaxing, but our boy finished out therapy with a few more unassisted steps.
And after that, we made our traditional visit with Yoda, and we were out the door, ready to hit the road.
And Just Like That… We Were Done
Casts removed.
10 intensive therapies in 4 days, complete.
Goals met.
So many bubble baths.
As always, Harrison is the strongest kid around.
I wish everyone could see his resilience and determination in person. He works through pain, frustration, and annoyance constantly. It’s never easy watching him push through tears, but that dimpled smile always returns when he crushes a goal.
Watching his eyes, watching his face, watching him push through with gritted teeth and tears running down his cheeks, there’s no question in my mind that before he’s ever five, Harrison has already put in more work than a lot of grown adults ever will.
And that’s the part people don’t always see.
Jenna and I don’t really post the worst moments. We don’t lead with the tears. We don’t show him at his most miserable. But I also don’t want anyone imagining this is easy for him, because it’s anything but. For every photo I have of him working in therapy below, there are 3 others where he’s upset, fighting through frustration, and simply trying to figure out how these, which essentially are new knees and feet for him, work.
He fights.
And now, we bring that fight home with us.
I said in the last post that we were starting a new chapter, and this week confirmed it.
This is a chapter of new braces we’ve never had before.
A chapter of relearning to walk.
A chapter of figuring out what Harrison can do now that his body is finally in positions we didn’t know we’d ever see.
And he’s going to tackle it.
He might not be happy about it. He might cross the finish line in tears, gritted teeth, spitting venom, fueled by pure rage.
But he’s going to do it.
Because I saw him do it.
Trip 33 will be in April. And with it comes another new chapter as we start treatment with the new spine doctor. We’ll see how Dr. Hyer feels about Harrison’s legs, his feet, his walking, and everything else by then.
And between now and April?
We’ve got school. We’ve got therapy. We’ve got a birthday party. We’ve got life.
Life doesn’t slow down with this kid, even between week-long trips to Greenville.
So we push forward.
We keep the momentum going.
Because we don’t know where that ceiling is.
But we have no intention of finding it anytime soon.
