Our 20th visit to Shriners Children’s Greenville is in the books. Twenty trips, of varying degrees of stress or relief. Over 11,000 miles, all driven towards the next step, the next milestone.
Our 20th trip gave us our first multi-day visit to Greenville since Harrison’s first Mehta cast last July. (How was that less than just 14 months ago?!) We marked the occasion by having 3 appointments (4 if you count x-ray) spread across those two days.
Going to be completely honest and transparent right here at the beginning; I was dreading this trip. Easily, the stress and nerves were building for at least the last month. I walked into that building Thursday morning, with some of the strongest uncertainty that I’ve had since last year.
And in the most Harrison way, it proved to be all for naught.
All my stress came from the uncertainty of Harrison’s spine. We’ve been out of Mehta casting for the past 6 months, and having him sleep in a brace that we knew upfront was not going to give any correction. The ultimate hope from the past 6 months was no drastic change. That high curve in Harrison’s spine had not gotten worse.
The fear and stress came from the unknowns. Harrison has grown so much in the past 6 months, and so many things have changed. I felt it was almost a certainty that the curve had shifted.
Really, I had already accepted that we would get told it had changed. I was stressed because if it had changed; we didn’t know what that meant. Would we go back into casting? Would we start looking at surgery earlier than the goal of waiting until he’s around 8? I considered anything and everything as a potential inevitability.
And what about all the progress he’s made and the independence he’s gained? What would happen with that if we had to change treatment options?
The unknowns weighed on me this time.
Again, all that thinking, and overthinking, was for not, as the latest x-ray showed that Harrison’s spine was holding steady. Even Dr. Pete was upbeat about this development and the results. The overall visit on Thursday proved to be one of our shortest to date.
So we have another 6 months until we see Dr. Pete again. Hopefully, the next time around, the time leading up to the visit will be easier on this ole Dad.
After twenty visits to Greenville, we finally made it to the local zoo. I will probably write more about it, but sufficed to say, it made for an enjoyable afternoon. Visiting a smaller zoo on a Thursday afternoon, after school has started, made for an enjoyable, relaxed visit. We could sit and spend time just watching the giraffes and orangutans without the push of crowds. Despite Harrison’s lack of enthusiasm, we had a pleasant time outside and crossed off another item on our Greenville bucket list.
The appointment I was anticipating the most was our visit with Dr. Ray, the new upper extremities specialist. I was happy when we walked away from the appointment that was night and day compared to our experience with the other uppers specialist.
Dr. Ray examined Harrison’s range of motion in his shoulders, elbows, and wrists. Harrison’s wrists are still the tightest and she provided some options to address the issue in the future. Of course, in typically Harrison fashion, he’s a more unique case in the AMC world, in that he has a good range of motion in his elbows. Which could prove to be a blessing or an extra hurdle in time. The biggest question mark currently is the amount of muscle and muscle tone he has in his upper arms.
Hopefully, we can continue encouraging him to use his arms and hands and build muscle.
We now have options in front of us. While they’re years down the road, they’re there.
As this was our baseline visit with Dr. Ray, I’m curious to see where we are in 6 months, when we see her again, and what her thoughts are then.
Our last visit of the day, and what we thought was going to be the most routine, proved to be the one that threw all things off the rails (in a good way).
During our last visit with Dr. Hyer, she had mentioned looking at another foot surgery in a year or so, which would help give Harrison a steady base for walking. The surgery is for a bilateral posterior medial release, not a repeat of his Achilles tendon surgery. It will help with his foot’s position. Around 33% of clubfoot patients may experience a relapse even after using the Ponseti technique and standard bracing protocol. What was unexpected was instead of next fall, we’re now doing it this fall!
You may immediately think, “Oh no! Has it gotten worse to the point they need to do it now?!” However, that’s not what’s happened.
While there has been some more regression, the cause of moving the surgery up is due to Harrison’s improvements and strength.
As soon as Dr. Hyer stepped into the exam room, she saw Harrison standing on his knees up against the wall. As her notes said: “demonstrates strong hip extensors”.
During her exam, she referred to him as “robust” with a good range of motion and “vigorous” lower extremities.
That’s all she needed to green-light the surgery now, so we can achieve, as she described in her words, “The Next Milestone.”
So, in the coming months, Harrison will have his next surgery, along with his next set of casts. The plan is for him to be in long leg casts for 4 weeks, allowing him weight-bearing and encouraging him to walk versus knee walking. After the casting, we’ll be in Greenville for a few days for some “tough love” therapy. All of this is intended to encourage him to get on his feet instead of his knees.
And Harrison did all this to himself, by showing Dr. Hyer what he was capable of!
The Next Milestone Cometh
So while we’ve been thinking that Harrison’s next milestone was learning to knee walk, that has proven to be the stepping stone, or gateway to the next true milestone, deemed by his doctor. That of walking.