We made our latest trek to Greeneville last week for our second round of Mehta casting and our latest set of AFOs. The more trips we take, the longer it’s taking me to recover from them. It is less the physical toll of the early morning, long day, and subsequent drive, but the weight of the emotions that are taking longer to recover from. I’ve always known this was going to be a marathon. That this, all of this, was now a reality of our lives, but even after 18 months, I still don’t have my stamina up to where it needs to be.
The process and the schedule of the day are pretty straightforward already. We’ve gone through nearly a dozen castings of some type or another at this point, so our son having a cast on is nearly more the norm than him not having one.
Having to leave him as he’s taken away by nurses to be put to sleep for a procedure doesn’t get any easier. The anxiety, while growing more and more familiar, is still there.
Once we’re shown to our room to wait, we have our routine. It consists purely of going and grabbing breakfast at the cafeteria, then waiting, sometimes grabbing a quick nap, before we hear from a nurse or Dr. Pete himself.
This visit was Dr. Pete coming up to chat with us after the procedure while HG came out of anesthesia.
I’m sure doctors go through their mental gymnastics and training to maintain as solid a poker face as possible when talking to patients and parents. Up to this point, all doctors have maintained a fairly steady calm with us, outside the day of Harrison’s birth. Well, Dr. Pete seemed somewhat off-center. It was subtle, and not overtly concerning, so much so, that the difference didn’t even register until looking back on what he said.
One of the first things he mentioned as he sat down to talk to us after letting us know that the procedure went fine was to emphasize how strong Harrison is. Even while being put under, our kid still was stubborn, it seemed. Acknowledging his strength and tenacity, however, seemed to make the next thing Dr. Pete had to tell us, weigh extra heavy on him.
Essentially, the book has been closed on the possibility of curing Harrison’s scoliosis. The combination of the position of the curve and the rigidness of joints that comes with Harrison’s AMC makes it difficult to get any type of correction. Dr. Pete said he had been able to get a correction up to around 10 degrees, but that was the extent. We’ll be going through a few more castings, but we’ll likely be going back to bracing sooner rather than later. If you read between the lines of what Dr. Pete was telling us, I suspect we’ll only be seeing 5-6 castings in total.
At one point, as he was talking to us, I halfway expected him to tear up. You could tell it affected him. If I hadn’t already been on team Dr. Pete, this visit had me ready to sport the hat and sweatshirt and wave the foam finger.
So, we’ve hit our first speed bump in a while. It sucks, but we knew this was the likely outcome. But no matter how small the hope and optimism are, it still hurts when its flame fades.
The primary focus now is to continue to move forward. We may not be on the path we were or were hoping to be. The key is, however, that we’re still on a path, moving in that same forward direction that we were before. The ultimate goal and destination are still the same. It’s just the road to get there may be a bit more challenging than the path we were on.
And while it sucks, the day and the visit as a whole were not lost, as we had many more stops to make before heading home.
After some rest and cuddles, while the plaster dried, we went down to casting, where they clean up the Mehta cast and ensure it is comfortable and functional for Harrison. After picking out a stylish dinosaur patterned wrap, we made our regular stop at POPs to pick up the latest model AFOs.
These new AFOs look so big by themselves it looks crazy, but fit him and look great on him. These latest AFOs, Harrisons 4th pair so far, are so much larger than his first pair that they can fit inside his newest. It’s crazy!
Not only did we get new AFOs, but we also walked out of POPs sporting our first pair of Billy Shoes! Billy Shoes are shoes made to easily get on and off with an around-the-shoe zipper. Extra bonus for Mom and a nice little perk to end the day with, these Billy Shoes are Arthur edition Billy Shoes!
So there we are. Another visit in the books. In six weeks we do it all again with cast #3!