What hopefully proves to be our last Greenville trip of 2023 is in the books, with Hall of Fame-worthy aspects sprinkled throughout the two-day visit.
This visit had been on the books since September when Harrison received his first set of long leg casts. For those keeping score, he pulled himself out of those, and we had to make what was essentially an emergency 12-hour round trip to get our boy recast. He proved to pull out of that set of casts as well, but was kind enough to time it better to where we did not have to alter plans a second time. His third set of casts, despite Dr. Hyer and the casting techs’ best efforts, proved to go down to his determination just like the previous sets. That’s right! Despite being tightly wrapped and glued, Harrison managed to wiggle out of the third cast as well. We could barely see his toes when we entered the casting room!
The casts themselves were meant to hold his feet in a position just past neutral while they healed from surgery, along with keeping his knee straight to help work on a contracture. While we have to be diligent with stretching, it doesn’t appear that his stubborn determination derailed the goals that were set when this latest phase started. Thankfully, no plans moving forward had to be altered because of Harrison’s constant pulling out of casts.
Our son’s determination did come at a small cost, as we discovered Baby Boy had given himself a bit of a blister on his heel and a bit of a raw spot on the top of his foot. Once discovered, there was a small amount of concern, primarily regarding the skin breaking. Fortunately, as he’s proven through all these castings, Harrison has pretty tough skin that likes to bounce back quickly. By the time we left Greenville at the end of our second day, his foot was already looking substantially better, erasing nearly all traces of concern from the doctors.
After the casts were off, we visited the X-ray department, and then we saw Dr. Hyer. She was satisfied enough with the results that our next follow-up with her will be a telehealth appointment before the end of the year. (Unless we feel the need to come down to be seen.)
We returned to POPs and worked with Mr. Phil for the first time in a long time. Harrison got new AFOs, nighttime braces, knee immobilizers, and brand-new Arthur Billy shoes, which made Mom excited. I’m sure I sound like a broken record, as I’m blown away at how big the AFOs are when we pick up a new pair. These mark number 6 for us, and I have the same reaction each time.
Did I mention that because of Harrison’s ability to be a bit of a Houdini, they upgraded these latest AFOs with ‘Houdini straps’ to help keep him secure in his AFOs? Yeah…
This child is slowly building a reputation on multiple fronts.
So, after cast removals, a Dr. Hyer visit, and a stopover at POPs for all the new goodies, we thankfully had a lunch break before the real fun began with two therapy sessions. In this case, fun proved to be some hard work, tears, and pure unfiltered stubbornness.
Physical therapy, with a toddler who has just been released from being in casts for a month, proved to be something that was more conceptual than actual. At least in this Dad’s mind.
I admit, I may have been a bit optimistic about what to expect. In my mind, Harrison was just going right back to standing up. No problem. I was completely ignoring the fact he had been in a cast for over a month. (Duh Dad!)
Day 1 was more about letting him get his feet back under him and feeling comfortable with it. His knee clearly was sore as well, likely from his attempts at pulling out of the casts, so he favored it slightly. Don’t think the boy got out of work, though! By the time OT came around, he was passed out. So we took advantage of the sleeping baby and the therapist started working on new wrist splints. We ended up walking out of Shriners on day 1, after 6 pm as the janitorial staff was wiping down the check-in stations, which we would be right back at 15 hours later.
Our second day at Shriners was all about therapy. Two PTs and a final OT.
While it took some coaxing to get him to, Harrison finally started showing a bit of himself and what he could do. He still wanted to be stubborn, so much so that his therapist Trish said that he was quietly finding his way into her Hall of Fame. (Which is great, just not the Hall of Fame we’d want him to be in!)
How stubborn is Harrison? Well, at one point, Trish (who was holding him) could feel his muscles and what he was attempting to do. Trish pointed out how he was exerting more energy just to fight against and avoid doing what she wanted him to do versus simply doing what she wanted.
Have I mentioned the stubbornness?
Yes, I admit, he gets it honestly (from both sides!) but as a parent, I shouldn’t be facepalming as much as I was during my child’s therapy.
We had about 4 hours to burn between our morning PT and afternoon PT, so a bit of cruising around Greenville was in store. To get a little boy to get some napping in, we just did some casual driving around, which is something I really enjoy doing in Greenville. You can see the history of the area, and there’s always something new to see. It’s a nice, calming reprieve from the stress of a stubborn toddler going through physical therapy.
We also did a bit of sightseeing down Greenville’s main street, something we’ve not done in the two and a half years we’ve been visiting the city. We checked out Mast General Store and O.P. Taylor’s Toy Store. (Which at this point may just be my eventual retirement plan!)
After sightseeing and a potential short father-son nap in the parking garage (nothing confirmed, someone rumored it happened), it was on to PT Part 2 for the day!
The first thing we took care of was removing the stitches! With a bit of Bluey and a helping hand from Dad, the nurse was able to remove all the stitches without even the smallest of complaints! He actually received a compliment for how well he handled it!
Once the stitches were out, it was time to get back to work! Thankfully, he gave in a little this time and was willing to do some work standing. Luckily, he got to walk around for a few minutes in a new type of gait trainer. He actually crushed it in this and did some of the best walking he’s done up to this point. He complained a bit while working in the gait trainer, but it simply was from being forced to go straight rather than having the freedom to move in any direction he could.
We wrapped up day two with another visit to OT to complete the new wrist splints, and we were on our way back home. This time, I’m pretty sure the janitorial staff was just getting ready to begin cleaning.
So yeah, two LONG days spent at Shriners Children’s Greenville.
I realize this post is longer than a typical one but bear with me for just a bit more while I’m a little more honest and transparent.
I am beyond relieved we’re out of those casts! Out of all the castings we’ve gone through so far with Harrison, these were second only to the casts, with the bar as being the worst to deal with. Honestly, the bar was more annoying than anything, and he was still small enough that it wasn’t as bad as these. Looking back, these may just be the worst we’ve dealt with up to this point. They were awkward. There wasn’t a day that Harrison was comfortable in them, and because he was so determined to be out of them, it stressed us having the check them constantly. (For obvious reasons)
Harrison rarely sleeps well in hotel rooms. He’s a boy that likes to be at home and in his bed. Well, the night between our first and second day in Greenville, the first night he had without his casts on, he had the best night’s sleep he’d had in months. I know some of that came from the work he put in during therapy, but the child has multiple therapies in a day practically half the days in a week. This sleep was from the pure comfort of being out of those casts!
I realize I was overly optimistic, thinking he’d just come out of his casts standing and ready to go. Obviously, we’ve got to put some work in. However, something that was abundantly obvious with the cast removal has been the use of his right leg!
Up to this point, Harrison has always favored his left leg. It’s been his “strong” leg compared to his right, which was the one that was dislocated from his hip at birth, and that he had surgery on two years ago. While there’s no proper explanation for why this is, Harrison has clearly started using his right leg more than ever since the casts were removed. Using his legs is now closer to equal than they have ever been. Which helps fill in the gap of hopefulness left by him not immediately standing up.
I know I tend to be very direct and almost procedural, with my posts breaking down our Greenville visits. I try to just break it down, give the update and move on. In doing that, though, I’m doing a disservice to all the incredible people at Shriners. Everyone we meet, that we work with, or interact with, is amazing. Between the Shriners Children’s Greenville staff and the therapists Harrison has at home, he’s surrounded by an amazing team. I would not trade one of Harrison’s therapists here at home for anything! I just hate we’re not closer to where we could take advantage of visiting Shriners more.
Harrison isn’t your typical case, and everyone we work with always takes his challenges in stride, with everyone having the same goals for him in mind. As his therapist Trish said during this latest visit, “I have to write everything out, so if anyone reads about Harrison, they understand everything. Because if you just read about him and his conditions, you wouldn’t think he could even sit, let alone all that he can do.”
I told Jenna on the way home that this was a kind of reset. The Mehta casts are behind us. We have this surgery and those leg casts behind us. We’re not set to be back in Greenville until February. So it’s time for a bit of tough love. Back to the basics, and start working hard towards the next goals.
It can be a test of wills at times. And when you see your child so armored up from all his splints and braces that he looks like he’s about to enter a jousting match versus going to bed, it’s easy to let his will win over.
The tears suck. They do for any parent, but when they come from you putting on a brace, it carries an extra weight, and it’s difficult. These past few weeks have not been the easiest, and no doubt they’ll be far from the worst in the years to come.
Our kid is determined. Determined to do things his way. His joints aren’t the hardest things to work through, it’s that hard head of his. Which every therapist that has ever come in contact with him will attest to!
But when he accomplishes something new. When he knows he’s done something. That look in his eyes lifts every ounce of weight off your shoulders, and reassures you that everything you’re doing is the right thing, and is worth it, for him.
In the tapestry of his life, these days in Greenville are but a few threads, significant and impactful, but only a part of the grand design. With each therapy session, each new challenge, and every milestone achieved, we are one step closer to uncovering the masterpiece that is our son’s incredible journey.