If someone were to come up and ask me what’s the one lesson I’ve learned in the past two years that rises above all others, my answer would be simple: not to get ahead of yourself.
I clearly forgot that lesson a bit this time.
On average, the drive down to Greenville, SC, the night before an appointment takes around 5 hours. During this 5-hour window, I started considering this exact post. A few days earlier, it had dawned on me that this trip to Greenville would be the appointment that concluded our second year of coming to Shriners Children’s Greenville. I was already anticipating what I would write and was trying to come up with a clever title for the blog post. We knew what we were coming down for this time. Our appointments were laid out, and things looked pretty standard as we were set to receive a new TLSO (thoracic lumbar sacral orthosis), new hinged AFOs, and new hand splints. We were simply coming down to pick up new gear. We would be in and out in a few hours. Our only big question was how long until our next appointment.
Spoilers: hardly anything went as we were anticipating.
What we anticipated to be a rather mundane appointment turned into 5 hours of running back and forth between different areas of the hospital. By the time we got back into the car to come home, we had visited POPs 4 times, OT 3 times, X-Ray 2 times, had two visits with Dr. Pete, and had random drive-by visits with PT.
As I said, not what we were expecting.
The morning itself started reasonably close to how we anticipated it would. We began at POPs to pick up our new TLSO and AFOs, followed by an x-ray while Harrison was in the TLSO before meeting with Dr. Pete.
The first hiccup/disappointment of the morning was when we got our first look at the new AFOs. They were not hinged as expected but were the standard solid AFOs we’ve had, just sized up from the previous pair. That was a bit of a bummer, as we were excited to see how the new type of AFO would help Harrison work towards walking.
While the assumption is that the order for new AFOs was misordered, leaving off the desire for the new ones to be hinged. However, looking into getting the proper AFOs ordered went from a primary focus to a secondary one rather quickly.
After having the initial x-ray, we were seen by Dr. Pete, and that’s when things changed.
We’ve been chugging along at a pretty good pace lately. New skills and goals have felt like the norm for Harrison lately. So we were due a bit of a hurdle.
During this visit with Dr. Pete, we learned for the first time that the placement of Harrison’s high thoracic curve is literally on the border of what is considered treatable with casting and bracing. So while we saw limited success with the casting, the TLSO in its current form was not cutting it. Adjustments to the brace were going to be made in an attempt to get the desired correction.
So initially, not a huge deal. We were scheduled to meet with OT, so the adjustments to the brace could be made while we were getting new hand splints made. It’s worth mentioning, at this point, that at no time during the 5 hours we were at Shriners was there any downtime. At no point do I think we had to wait more than 10 minutes on anything or anyone.
We had nearly completed the splint for Harrison’s left hand and wrist when POPs called us back down to try on the new and improved brace.
So we went through the fitting process again and went back to x-ray to check and see how Harrison’s spine looked in the brace. We knew before we ever left the room. We could tell that Frank, the Director of POPs, who was the one helping us, was not happy with what he saw on the x-ray. Our assumptions were proven correct when we met with Dr. Pete again and were given the less-than-stellar news.
They were completely scrapping the current TLSO. It wasn’t doing what was needed. Due to this, Dr. Pete consulted with another spine surgeon, and they agreed to try another type of TLSO brace, called a Providence brace. The Providence brace is a nighttime brace and is typically used in the treatment of Adolescent Idiopathic Scoliosis. The brace itself is an “overcorrecting” brace and a bit of a hail mary. The alternatives are not the greatest; leaving Harrison without anything is a scary proposition altogether.
After the solid gut punch and reality check, we still had to revisit POPs to finalize the AFOs and be measured for the new Providence brace.
Once we left pops, it was back up to OT to finalize the splints and to hopefully head home.
While sporting his latest model AFOs, Harrison was getting squirmy and wanted down. So, in typical fashion, I let him stand on the ground against my leg for support.
Remember I mentioned the random drive-bys with PT? Once the OT saw Harrison standing, she sent a message to PT, which led to her coming straight over. Once PT arrived and saw our, at this point exhausted and annoyed, toddler standing on his own, in his borderline defiant nature, all she could say was “Harrison, you simply make no sense.” Simply put; due to Harrison’s multiple diagnoses, he shouldn’t be doing what he was doing at that moment: bending over at the hips and raising back up while standing.
So the day did end on a somewhat high note. It is always a bit of an ego boost when your kid causes specialists to go speechless. Plus, if I ever write a book, I already have my title: The Boy Who Made No Sense.
So yeah, a rather eventful visit to close out year two. This leaves us with a literal cliffhanger to be picked back up on in a month when we start year 3, and we find out what our next steps will be.