This latest trip to Greenville marked our 10th trip.
10 visits to the Shriners Children’s Greenville. Over 6,000 miles driven.
I don’t recall what I was thinking or what I was expecting when we made our first trek at the beginning of April last year. I know whatever expectations I had in my mind then, we have far exceeded them. (Plus some!)
We spent three days and three nights in Greenville this past visit. I considered writing multiple posts, one for each day similar to what I did back in November. I decided to wait. To take in the entire trip first before writing anything. I wanted to wait because this being our 10th trip; it felt like not only a milestone but an opportunity to reflect. If for no other reason than to remind me how far we’ve come.
This first day, one of the big highlights was getting these latest casts taken off. This latest set of casts was Harrison’s seventh, and easily the most cumbersome and bothersome set that we’ve had to deal with up to this point. (Yes, I consider them worse than the spica cast!) That bar in the middle of his legs was just flat out in the way; it was awful. So a big deal and a good way to start that first day.
The rest of the Shriners’ visit that first day included a visit to POPs for AFO set #3, a visit to PT and OT for a bit of therapy, and picking up hand splints #5.
We finished up our first full day in Greenville with some shopping for a certain little boy’s first pair of shoes, along with the first shower he had had in 10 weeks.
Trust me when I say that HG’s reaction to the warm water hitting his back was the same we’ve all had after a long day. He could have had me holding him in that water all night.
With as much therapy as Harrison has, he has already learned how to misbehave and get out of things if he’s not in the mood. Basically, if he doesn’t feel like it, you will get nowhere with him. He had done well in PT, and the therapist could feel his muscles fire and he slowly learn to adjust his weight between his legs. Which I was happy about. He’s still very cautious about his right hip, along with it being fairly stiff compared to his left. I’m sure it has to feel weird for him, but he’s slowly moving it and trusting it like he does his left. I’m sure it will be a while before he’s not protective of it, but I was happy that the therapist not only could acknowledge that but feel that his muscles were firing off and he was active on both his left and right.
Another highlight for me that day was with OT.
As I said, Harrison doesn’t always play fair with showing other people what he can do comparative to when he’s with us. When he is sidelined (laying on his side) Harrison has learned that with shoulder movement he can move his arms some. Most of the time, it is simply him rocking back and forth, letting his arm swing wildly.
However, recently (we’re talking literally in the last seven days) he has shown signs of a bit of finer movement. Yes, he still will swing wildly, but he’ll also slow down. To try and be more precise with what he’s doing. He has slowly started trying to place his hands on things. He’s unable to grip anything, but he has started to understand putting his hands on objects. The movements may not always be graceful or smooth, but they’re there, and one of the OTs was able to see some of this, which I was extremely happy about.
It’s nice when a doctor or therapist can see or feel something themselves, versus having to watch a video we show them, simply because our son refuses to go along with things on a given day. Throughout the day, however, was more talk about his spine than we had ever experienced up to this point, so it did not surprise me we had an x-ray order for first thing the next day. After 10 months, we were finally going to get a clear picture of what our baby boy’s ribs and spine looked like! I was equal parts excited, nervous, and scared at this upcoming revelation.
Before all that, however, we had to make a visit back to Falls Park and walk around for a bit and enjoy the day. A certain little boy may have gotten a bit bigger between visits 1 and 10, but despite the photos suggesting otherwise, he was a bit more intrigued with things this time around.
Finally, day 3.
Day 3 proved to be a lot of things.
We had the x-ray, along with a visit with Dr. Hyer. She was happy with how HG’s feet and hips were looking. That all checked out and was progressing as hoped. Baby boy’s spine, however, led us to meet a new doctor who they all called “Dr. Pete”.
We could see the x-ray and what Harrison’s spine and ribcage looked like. Which, as feared, unwrapped what our next chapter is going to be focusing on. Yes, Harrison has infantile scoliosis. Something we already suspected/knew. However, his curve is higher with his ribcage, which can be troublesome when an infant has it can have an adverse effect on the development of the lungs and other internal organs as Harrison grows.
Plus, it’s not in a place that can be easily corrected.
Essentially, we were told he’ll likely never be completely cured of the curvature. So not the greatest of news, but not completely unexpected. However, I’m tired of doctors using phrases like “not good” or “serious” when it comes to my son. These initial consults with new doctors always prove to be jarring.
So, after this new smack in the face, we had another visit to POPs and our favorite, Mr. Phil. This time it was for a new TLSO (Thoracic Lumbar Sacral Orthosis) Brace and a pair of knee immobilizers. As this was not on the original schedule, this took up a bit of time. Harrison seems to do better when he doesn’t have time to slow down versus having to sit in a room and wait for hours. Thankfully, this visit to POPs fell within naptime, so once we were set up with our new brace, we were on our way to one more quick therapy (that included standing up with the immobilizers) before finally being able to head home.
Onto the Next
The plan now seems to focus attention on HG’s scoliosis. Our first step is to get an MRI of Harrison’s spine to ensure there is no risk to his nerves or spinal cord, then determine a game plan. Right now I guess any and all things are on the table, but we’re likely looking at casting for 6-months in the near future. After that, we’ll see. For now, we have a brace and are concentrating on strengthening his core and trunk as we work on more sitting and standing. We’ll wait to talk to “Dr. Pete” again and see what he says. In reality, once we have the MRI complete, we’re likely to reach out to other doctors and bring in more eyes. With Harrison’s low muscle tone in his midsection, along with a few other variables, there’s a lot to consider.
So that’s where we are. We will continue to work on Harrison’s legs, to stretch, and work on hip and knee movement. To work on sitting and hopefully to standing. We will forever be working with those things. We will never not be working on stretching and strengthening. However, our focus has now started shifting up the body more. To his midsection and his spine. This milestone 10th visit to Greenville proved to be many things, including the beginning of our next chapter.