Whew, it’s been a long time since I’ve blogged!!! Now that things have slowed down in the specialist/surgery department, our lives have almost been routine and mundane.
But, Drew’s braces have kept things a little interesting. I’m telling you, HKAFO’s are no joke. Drew’s HKAFO’s are a life-saver and provide so much wanted independence for Drew, but it comes with its own frustrations and challenges.
HKAFO – Hip, Knee, Ankle, Foot Orthotic. Drew is braced from foot to hip with moving joints at the ankle and knee. Nightly, he wears a hip piece that attaches to the leg braces to keep his feet aligned straight. We remove the hip piece each morning.
Drew was recently fit with new braces back in December since he’d experienced a significant growth spurt. He had outgrown his ability to attach his hip piece around Thanksgiving (too much turkey, I guess! jk) So, arrangements were made to visit Louisville, about 3-hour each way, to have new ones made. Typically it takes about 4-6 weeks to get the new set of braces.
Early February we go to get his new braces. This day is always really tough. Any time there is a change in the braces, be it another accessory or even just a new set, the transition is difficult to put it mildly. To put it bluntly, Drew is having a meltdown and I’m angrily snapping at him threatening bodily harm through clenched teeth.
The seemingly endless day of putting on the braces, figuring out where they painfully rub or pinch, taking them back to the lab to warm the plastic to remold, retrying them on, finding more pressure points, more remolding, more retrying, more rubbing, more molding, and on and on and on again gets exhausting. We spend six hours putting on and removing the braces a dozen times and towards the end of the day, I’ve had it, Drew’s had it, the staff has had it. And, after six hours of this pure torture, the braces fit perfectly and there are no more rubbing or pressure points, but Drew is still not happy because they’re so new and stiff and just feel different. I suppose it’s about like us buying a new pair of shoes that we have to wear and get used to the new feeling except his “shoes” cover his legs from his toes to above his knee, made of metal and hard plastic and make me never want to complain about new shoes again. He’s disgruntled for a couple of days, but eventually, he adapts and it becomes a thing of the past.
But, it’s not quite over. It’s inevitable that after a few days, previously undetectable
rubbing and pressure begin to present themselves. You know, we buy shoes that feel great in the store and then we wear them to work or out shopping and then by lunch-time, we’re removing our shoes and rubbing our feet woefully? Same with braces.
So, back to Louisville for further modifications. As you can see from Drew’s foot, it can get pretty bad. Poor thing tried to endure it as much as he could as he was rehearsing for a dance performance twice weekly and all of the extra walking and moving around exacerbated the rubbing eventually making him have to sit out rehearsals until we could be squeezed in at the clinic.
Drew is also required to wear a hip piece each night, but as I mentioned, we’ve been unable to attach it since Thanksgiving. So, part of our process was to get a new hip piece made. Now, Drew HATES the hip piece and believe me, he hasn’t had a single complaint about not having to wear it. And, knowing how stressful getting just getting new braces is, anticipating having to force him to put his hip piece on once again each night makes me want to start day drinking already.
Somewhat fortunately, we couldn’t collect the hip piece when we got the new braces because the metal bars that attach to the leg braces weren’t set properly and I was disappointed to find that the old frustrating tedious attachments were installed despite my desperate plea to come up with something easier. So, on one hand, I’m relieved because having to deal with new unbroken-in braces AND a much hated hip piece simultaneously may have been a perfect storm that would result in homicide. But, his hip piece is important to keep his legs aligned and he’s been without it already two months.
The only way to get the hip piece is to ship his leg braces back to the factory and have them make some modifications there which meant being without his braces (and unable to walk) for up to a week. This is bad news when it comes to preparing for a dance performance and the vital weeks leading up to the show. So, it’s agreed we wait until AFTER the performance.
Well, dance performance has come and gone (watch the whole show by clicking the link under the picture to the left.) So, I’m referring to my calendar for a week in which having the inability to walk will have the least impact.
He’s going to have to wear the hip piece each night. He hasn’t worn the hip piece since Thanksgiving and let me tell you, he HATES the hip piece. He has been in HEAVEN since he’s outgrown his hip piece and hasn’t been sleeping with it. Having to return to the restrictive hip piece each night is going to be the day I described above except times 10 because we are all going to be trying to sleep while he deals with it.
But, I do have a plan: I’m going to make him wear it for the first two hours of the first one or two nights, and then four hours and then the whole night. He’s gone periods of time without the hip piece and then returned to wearing it, and the first couple nights were hard, but eventually it became easy.
With the absence of his hip piece, I have already seen a significant change in his legs. He’s pigeon-toed which is evidence of the internal rotation below the knee is returning (and is what the hip piece is designed to correct.) It hasn’t been too much of a problem, but he did trip over his toes twice the other day.
In addition to his rotation, I’m very discouraged to say that his legs are no longer as straight as they were post-2016 correction. He already has a visible pronounced bend in each knee. I hate to say it, but I think we’re at fault for this one. Post-2016 correction, we were all, “You’re never taking those braces off again!! Must. Keep. Legs. Locked. Straight. AT ALL TIMES.” And then came Drew asking politely with puppy-dog eyes and late chaotic nights of “I’m just too tired to put them on” or “it’s a special day so we’ll let you sleep without your braces for tonight” or “Mom/Dad, my legs are SOOOO exhausted, can I please have a break from my braces?!?” And, here we are less than two years later suffering the consequences.
At first, I was mortified because I convinced myself that it’s all over. I feared that there was a limited number of times that surgery can be done to correct bones and no one person can endure such major corrective surgery every few years for their whole life. I envisioned having to just give up and Drew slowly returning to losing his independence. All because we were too lazy on some nights. But, a desperate plea to other parents whose children have endured similar surgeries eased my mind in that their children, too, lost extension regardless how strict they were with the braces and it would continue to be a problem until growth stops. Which I guess makes sense. So, maybe we’re not to blame and Drew won’t permanently lose his independence.
In addition to that craziness, we recently (finally) decided to purchase new socks for Drew. New braces; new socks. Boys and their athletic shoes are known for their odor. They make commercials featuring sweaty stinky baseball shoes. Well, HKAFOs are no exception. So, we decide to splurge on special socks designed to reduce moisture and odor. We end up spending $200 on 5 pairs of socks. Yes, folks. $200. ON SOCKS. Braces are NO JOKE.