We made our seventh visit to Shriners Hospital in Greenville, SC at the end of last week. It was our first time back seeing Dr. Hyer, Phil, and all the rest since the middle of July.
On our last visit, we had a little over 14lbs baby boy who had already grown out of his first set of AFOs.
Well, on this visit we had an over 18lbs baby boy, who had gotten too big for his second set of AFOs. He had outgrown his third set of hand splints, and now had no problem talking up a storm to anyone who would take the time to listen.
With this latest visit to Greenville, we definitely got our time in.
Yes, we had our checkup with Dr. Hyer. We went and saw Phil, and even visited OT, but we also had more going on in between.
While this may sound strange, I’ve craved to see any and every x-ray of HG that I could. Doctors and nurses can only tell us so much, and I’ve felt it would help lend more light to what all he has going on under the skin.
We started this visit with a trip to X-ray, where we got to see an x-ray of HG’s hips. They set surgery for the first week of November, so while we were they, they grab a quick look.
We know his ribcage has some structural uniqueness to it, but no one has ever really broken that down for us. No one has truly even given us a clear picture of what’s what. We’ve also known his right hip has been dislocated since birth but did not know how dislocated it was or what all was going on with it either.
Well, that picture has been taken care of. One look at the x-ray and it was pretty straightforward where the dislocation was. Thankfully, however, it’s pretty much your typical hip dislocation, so nothing alarming or abnormal, giving way to what will hopefully be a relatively routine procedure in a few weeks.
It’s a strange thing to be happy that your infant son has a typical hip dislocation, but that’s where we are with things.
After the x-ray, Dr. Hyer came in, where she checked his range of motion, checked out his hands, feet, and spine.
All things checked out well. She was happy with the head control he’s showing and improving on practically daily at this point. In checking his splints and AFOs, she wanted to see new splints made that day. With surgery on the horizon, she just wanted to have the AFOs adjusted some to help accommodate someone’s big old thick calves.
With HG growing too big for his AFOs, his feet had not been sitting in them as properly as they had been or needed to recently. During her exam, Dr. Hyer felt that his left foot was turning back in slightly. This was something that was expected to eventually happen. Something we knew would be practically impossible to avoid because club feet on AMCers like to regress a bit, especially after growth spurts like a certain little boy recently had. This wasn’t so much an “if” type thing, but simply a “when”.
Dr. Hyer didn’t seem particularly concerned with this (as I said, we were pretty much expecting it to occur at some point) and said we could address that after HG’s hip surgery.
So all-in-all, another solid report. As Hyer said as she was leaving the room: Harrison continues to defy the odds and expectations.
Mr. Phil! (POPS)
After seeing Dr. Hyer, we headed back down to POPS (Pediatric Orthotic and Prosthetic Services) to see Mr. Phil. Because of the upcoming surgery, and HG being in casts for at least 6 weeks after, rather than measure and prep for new AFOs, Mr. Phil just went with adjusting the current ones. Widening them a bit to accommodate someone’s chunky legs, along with giving the orthotics a new set of straps and pads, with fresh, clean, ridiculously rough Velcro (joy!).
We had one more stop for the day. That stop that proved to be the longest! (But arguably the most crucial at the present)
Once we made it up to OT, it was lunchtime, so we had some time to wait.
Said wait, allowed us to grab a quick bite ourselves at the cafeteria, and sit outside for a few minutes. It was a very nice reprieve from being inside the hospital all morning, to say the least.
Eventually, we made it back to OT, where we shared the splints we received from Lexington. I won’t go into the reaction those splints received. We’ll just say that they quickly dismissed them as not what we needed. (I’m not dogging the Lexington Shriners, it’s just very apparent the difference between people who work with AMC children and what they need in orthotics, versus those who do not).
These new splints feel like they have upgraded us to the next level. If our first splints were Phase 1, we have definitely moved up to Phase 2.
With HG’s splints up to this point, we were concentrating on his hand position in relation to his forearm, along with increasing his range of motion in his wrists. These new “phase 2” splints move past those focuses and are putting more focus on his fingers and thumb placement. Something we were hoping for and that Jenna has really been pushing for recently.
So we came away from OT extremely happy and pleased.
‘Charlie Brown Knees’
We were in OT for a couple of hours, during which they introduced another AMC parent to Jenna while I had stepped out. During introductions, the Dad noticed how his son’s knees and HG’s knees looked very similar. A look that the Dad referred to as ‘Charlie Brown knees’ and frankly, after hearing that, I can’t see them as anything else. From now on, that’s how I’ll describe them; Charlie Brown knees.
Once I came back, the father and son were at his therapy. The doctors offered to introduce me to him, but our paths didn’t cross, as this was when HG’s splints were ready to try on!
Once we were confident that the splints would work and we had the all-clear, we had been at Shriners for six hours. With at least a 5-hour drive back home in front of us (traffic caused it to take nearly 6.5 hours), we booked it out of there as soon as we had the green light!!
So for now, only one of us has met another AMC parent, but hopefully, that’s something I can make up for at an upcoming visit.
HG continues to maintain his forward progress in his development, treatment, and orthotics. We’re basically in a “holding pattern” for the next few weeks, as we’re quickly approaching his hip surgery the first week in November. Once that happens and we go through recovery, whole new chapters of exercises, therapies, and goals begin.