January 14th was the last time we were in Greenville, SC for a visit to Shriners Children’s. Despite having over 3 months between visits, and loads of changes and growth, we went into this latest visit, our eleventh, expecting more of a quick in and out kind of checkup. As is with all things Harrison, things did not go as expected, and we had a much more in-depth visit than what we had been expecting. Rather than simply seeing Dr. Hyer for a follow-up, we saw Dr. Hyer, went to POPs, saw Lisa in OT, had 2 x-rays, and met with Dr. Pete.
The visit to Shriners started as expected. After check-in, we went to x-ray so they could grab a quick x-ray of Harrison’s hip and then see Dr. Hyer. The follow-up with Dr. Hyer went smoothly. She was happy with how his hip was looking. Confirmed that it was still in socket and said that his feet “looked great” and were not showing signs of regression. (So double sighs of relief). She didn’t see a need for another follow-up until August. So after a quick check to see how the AFOs were fitting, and realizing how rough the straps were (boy is rough on these AFOs!) we were off to POPs for a bit of an AFO refit.
POPs & OT
While POPs was working on Harrison’s AFOs, we doubled up and headed up to OT to see Mrs. Lisa rather than just sit and wait. With no follow-up until August, we wanted to get a quick thumbs up on Harrison’s hand splints as well. Mrs. Lisa was thankfully free and was more than happy to take a few minutes so she could see Harrison. While with Mrs. Lisa, we were told that Dr. Pete was in surgery, but had stepped out to request we have a new x-ray of Harrison’s spine. This was a little surprising considering we just had an MRI a few weeks ago, but it was only going to take a few minutes, and personally, I’m appreciative of the thoroughness. So back to x-ray we went!
The whole day’s visit was turning into a fluid situation where we were having to pivot after every stop, sometimes without certain staff members realizing what was happening. Case in point: after the x-ray, we were told to go back to POPs to pick up Harrison’s AFOs, then head back to the clinic to wait on Dr. Pete. Spoilers: The clinic didn’t realize this was happening. Thankfully, it wasn’t too chaotic as it was at the end of the day, and we ironically followed behind Dr. Pete back to the clinic area, so once they found us a clean room, there wasn’t any waiting involved.
Dr. Pete Stasikelis is the longest-serving pediatric orthopedic surgeon at Greenville Shriners and is affectionately known as “Dr. Pete”. Dr. Pete is a member of the Pediatric Orthopaedic Society of North America and the Scoliosis Research Society, just to name a few. Just like Dr. Hyer is a specialist with arthrogryposis, we have Dr. Pete, who knows a thing or two about infantile scoliosis, and who will oversee Harrison’s treatment. Greenville continues to prove itself to be where we need to be.
I felt like I was going to like Dr. Pete during our last visit, but this visit cemented that. He’s direct, but not like the blunt end of a knife, like some other doctors we’ve dealt with. Right out of the gate, he lets us know that if he was only treating for scoliosis, he’d give himself an 80% chance of curing Harrison, but because of the added arthrogryposis and nemaline myopathy, he drops that success rate to around 20%. Not optimal, but also not surprising.
One thing I like about Dr. Pete is that he comes right back after that news and says that if it was him, even a 2% chance of success is better than nothing and worth striving for. Something we’re in total agreement with. Treatment options boil down to two options; continue bracing with the risk of Harrison’s curvature getting worse, or beginning Mehta casting. Zero thought had to go into this. We already knew Mehta casting was coming and we’re on board.
A Mehta cast is a plaster cast applied from a child’s collarbone to the bottom of their spine. Once the cast hardens, it holds the spine in position by applying gentle pressure. Harrison will need a new cast every six to eight weeks, with each one straightening the spine a bit more.
Essentially, the goal here is twofold. On top of the potential of curing his scoliosis, we want to avoid the curvature getting worse. While on paper that’s an obvious want, with someone Harrison’s age, there’s more to consider, including lung and organ development. If we left the spine untreated, and his curve got worse as he grew, then there is the risk of impairing his ability to breathe, on top of other health risks.
It really was the only option in our book when it came to treatment. We had one concern, in that he will likely have some muscle loss while in casts. This isn’t something you want when it comes to nemaline, however, Dr. Pete, in his way, simply pointed out that there is muscle loss in any casting, but this was all in hopes of ensuring Harrison could maintain breathing and have a healthy lung capacity. He was reassuring in his words, but will also maintain diligence when it comes to Harrison’s NM.
So right now, we’re looking at potentially up to 2 years of casting, starting in July. The process is going to be fluid. There are many different options and possibilities on the horizon, and as always, we’re unsure of what path the future hold.
So no Greenville trips until July! We’re for sure going to be front-loading the summer and taking full advantage of our time between now and our first casting, and this dad is going to be taking all the showers with his little guy that he can, because come July, no more showers with Daddy. (Easily the part I’m having the hardest time with right now!) There’s a strange sense of excitement that we’re continuing to move forward with Harrison’s treatment. (I know, that sounds weird). We have a plan, and a great team of specialists in Greenville that continue to prove that the time and effort that we take to make the trips there are far and beyond worth it. (Plus, nothing beats a Happy Meal in your hotel room after a 5-hour drive!)