Well, the braces with the new knee joints were all great while they were shiny and new, but we quickly realized that our struggles have yet to be completely relieved. It started with a mysterious rare pop that came from his knee joints sparking anxiety in us all fearing that the joint would collapse causing Drew to fall and injure himself. Despite some inspections, the knee joints appeared to be fine so we just hoped for the best. And, despite the orthotist’s best efforts, Drew’s heels just wouldn’t stay in his foot cups so we just accepted this as reality. We were just so happy to be walking.
Drew volunteered to participate in a dance class with the elementary school with the ultimate plans to perform on stage. He attended practice once to three times a week for over a month. Even though I was dying to see what they were doing, I kept myself from peeking at their practices in order to be fully surprised when they finally put on the show. I don’t know what I was more excited about: seeing Drew dance on stage or discontinuing loading and unloading his wheelchair into the back of the truck three times a week for practice (even though he walks, he still relies somewhat on his chair.)
Throughout practice, Drew continued to struggle with his braces with his heels becoming raw and the popping continued to become more frequent and problematic. I don’t think our current orthotist didn’t try everything they possibly could to fix Drew’s braces, I think they gave it their all, but it was evident that Drew’s needs far surpassed their typical clientele. So, I was in the market for a new orthotist. After a failed attempt to get set up with an orthopedic doctor at Shriners in St. Louis to refer us to an orthotist with more experience with pediatric orthopedic deformities, I made an appointment with a specialist at Kosairs in Louisville who referred me to an orthotist that would, much to my disbelief, actually come to our home for consults.
So, pretty quickly we had a guy with his mobile lab in his work van here taking casts of Drew’s legs for a new set of braces. I could tell pretty quickly that this new company had staff that knew what they were doing. He began by making a thin cast of Drew’s legs and, much to Drew’s misguided anxiety, cut them to remove it from his leg leaving them with a model of Drew’s legs.
Now came the hard part: waiting for the final product.
My anxiety continued to grow as Drew’s current braces were now popping incessantly requiring him to frequently lean against a wall to re-lock the knee joints. The metal teeth within the locking knee-joint were wearing down and the joint was slipping. It was like we were on the verge of a catastrophic collapse which would mean serious injury as not only is Drew unable to support his weight without the locked knee-joint, but a sudden and unexpected collapse wouldn’t give him a chance anyway.
And, it wasn’t long before that feared event happened. Drew’s right (?) brace suddenly slipped the joint causing Drew to twist his knee in desperate effort in trying to avoid bending it and fell causing severe pain. It was my worst nightmare. I didn’t witness the event myself, but I could imagine what it was like. It brought back bad memories of witnessing the collapse of his right femur as it was slowly fractured during therapy. All of this less than a week away from his dance performance so I was afraid that went up in smoke.
Luckily, the injury didn’t turn out to be as bad as it could have been. Some ice on it and it was soon forgotten about. But, it made us even more anxious to get these new braces and quick.
Recovered from his fall, Drew performed on stage in the dance show and it. was. AWESOME! Drew even performed a solo captured by a local photographer:
I had also taken an opportunity to update our community on Drew’s progress. Our community was instrumental in helping us achieve our cross-country adventure and numerous surgeries through their very generous donations and support and I was proud to announce Drew’s success.
I was excited to finally hear from the orthotist with what I assumed was going to be setting up a meeting to fit Drew’s braces, but that was quickly shattered with the notification that they were “still waiting on Medicaid authorization.” She assured me after my disappointment that we were looking at another 2-3 weeks that it wouldn’t be that long, but I just internally laughed at her innocence. Oh, honey…we’ve been through this to know what it takes.
So, after my correctly predicted two weeks, I once again heard from them. The braces were ready and he’d be in our area again…..May 21. I about choked on my drink. May 21st?!? NOOOOOOOO!!!! We simply could not wait that long. Drew’s braces now popped non-stop and even he was getting aggravated with the stop-and-relock-every-30-seconds routine. Drew had just about stopped walking completely from all of the various points that were causing too much pressure on his ankles and knee. We simply needed new braces much sooner than five weeks. Our sanity would not last that long. So, after the shock and dismay of such an idea, I desperately suggested I’d come to Evansville (an hour drive for me) to meet them if it meant getting them sooner and lucky for me, they agreed.
The next day, I met the brace guy at the Panera Bread in Evansville. We casually waited on the sidewalk outside of the restaurant. At one point, an employee, having seeing us kind of just hanging out there and no obvious reason, asked us if we needed anything and after I politely explained we were meeting somebody, I made sure we weren’t bothering anybody loitering in this area. He seemed to react with a very enthusiastic, “Oh, no, lady with the disabled son, I and nobody in a mile radius is bothered by you here at all…please hang out here as long as you want!” LOL
I hadn’t quite thought about how this would play out since they didn’t have an office in Evansville and I was meeting him at restaurant off of the interstate. So, when he pulled into the parking lot with an unmarked grey cargo van with no windows and popped open the back doors, I realized how shady this must appear to onlookers. I kind of wondered if people thought I might be selling my kids to a pedophile!
All kidding aside, Drew’s new braces were fit, and adjusted, and fit again. Drew tested them out. Pointed out pressure points. The guy would whip them back into his mobile lab and correct any flaws and pretty soon, Drew and I were eating sandwiches at Panera Bread admiring his sparkly new braces! They’re so quiet! No popping! Drew says now he can be a ninja and actually sneak up on people!
Old, dated and hated boring braces:
Drew has had the best time surprising everybody with his new braces. His ultimate target is one of the hospital’s physical therapist office manager who is a die-hard Louisville fan. They go back and forth about the Wildcats and the Cardinals so Drew was really looking forward to showing off his allegiance to UK. Unfortunately, he wasn’t in the office today, but next time, John D. Next time.
Go Big Blue!