Drew just completed his fourth week of physical therapy. It’s gone pretty good, though his progress has been slower than I like. His range of motion is making incremental improvements. He’s standing for very short periods of time and walking using a Lite Gait apparatus to help support his weight. Drew has maintained cooperation and positive attitude much better than anticipated, though that’s not to say that therapy hasn’t been difficult for him. He tires easily and pain becomes unbearable rather quickly. He pushes himself when he’s standing and walking, but certain stretches are excruciatingly painful for him rendering him panicked and resistant.
He has two hours of therapy a day, five days a week, with one hour dedicated to standing and walking and the other hour dedicated to stretches and exercises to build strength, endurance and range of motion. Standing and walking is practiced in a Lite Gait system that ensures Drew won’t fall and supports his weight thanks to the harness that is clipped into the elevator which can be raised or lowered to customize the difficulty. It looks like medieval torture machine. Of course, Drew enjoys raising the elevator high enough so he freely swings and dangles in the harness. His therapist will give him a break frequently and once jokingly, after raising Drew, still secured in a harness, so he can swing and quipped, “Now, don’t you go anywhere!” :’) :’) :’) Other times, Drew will relax all of his muscles and hang his head as if he’s lifeless and he’ll say in robotic tone, “Powering off! *bbzzzzhoooooo*” The therapist pushes him through the gym, Drew dangling lifelessly and other therapists will ask, “Oh, need new batteries?” Drew’s always good for a giggle!
Therapy has gotten better since getting Drew’s shoe lift. He’d been struggling with the lopsided stance due to his shorter leg. The local orthotist here put a 1.5 centimeter lift on the bottom of a brand new shoe (which we purchased during a tax-free weekend here in Florida, something I didn’t even know existed anywhere!). Since putting it on, Drew has been able to stand unsupported for a few seconds before collapsing in exhaustion. So, it’s helped. I just wish I had thought to jerry-rig my own little lift on the bottom of his shoe like I did during his fixator days. I feel like we wasted the first three weeks of PT trying to deal with the short leg. Things have been going well with the shoe lift until the orthotist called and said the shoe lift is not approved by our insurance so now we must pay $70, which by the way, is $15 more than we paid for the shoes themselves. But, like I said, PT is going better with the shoe lift so it’s not a loss.
Exercises are done without his braces on, which are awesome to remove after he’s gotten all hot and sweaty from the previous hour. Most exercises are easy: leg lifts, scissor kicks, sometimes with weights. The stretches are
slightly more uncomfortable. Having had rods in his legs for such a long period of time makes muscles weak and unable to contract and release properly so Drew can’t bend his leg on his own, and when it is encouraged by the therapist, it’s painful. It takes a lot of stretching over a long period of time to regain the flexibility to bend the leg so when Drew bends his leg as far as his muscles allow, the therapist has to hold the stretch and apply gentle force to encourage further stretching, holding for 30-45 seconds. This is very painful for Drew and this stretch is met with a lot of crying and yelling. We try to calm Drew and remind him to breathe, to remind him not to resist the therapist which can make the pain worse. It’s not easy sitting by watching Drew endure such pain. My heart bleeds for him as he begs the therapist to stop. Plus, there is the added stress of fearing sitting by and witnessing another fractured femur as we did in 2013. I still grow antsy when doing this very stretch.
Don’t let all of the smiling photos of Drew in therapy fool you. I do capture a lot of positive moments in therapy when things are going well, but when Drew’s upset and struggling, you don’t just pull out your camera and insensitively snap photos of his lower moments. Physical therapy is rough and tiring. We’re at the hospital for over two hours every day of the week.
To further complicate therapy, Holden is now forced to tag along with big brother on our daily trips to the hospital. Daddy returned back to Kentucky on Sunday this week so this was my first week escorting Drew to therapy every day (whereas, Daddy and I took turns while the other stayed home with Holden). Obviously, Drew has quite a few trials and tribulations, but it can be easy to forget how hard it is for little ones who are involuntary subject to their sibling’s special needs. Poor Holden hasn’t had a real nap this week thanks to Drew’s therapy being scheduled during his preferred nap time. One of the walkie talkies that I used so I can remain in close contact with Drew while Holden got to enjoy taking a short walk around the neighborhood broke so Holden is once again restricted from participating in his favorite pastime (because with Drew in a manual wheelchair he’s unable to independently use, I just feel nervous about a spontaneous toddler who darts in random directions nor does he follow instructions well while simultaneously having to ensure that Drew isn’t absentmindedly let go of to roll off a curb and tip over.) Holden is subject to stricter rules of politeness and limitations while wandering the halls of the hospital during Drew’s 2-hour therapy sessions and he’s starting to lose his patience. Can you imagine having an active three-year old in a doctor’s clinic for TWO HOURS? Yeah. It’s stressful. Meanwhile, I’m trying to give a helping hand when I can by removing and replacing Drew’s braces as needed for each therapist while simultaneously trying to keep a three-year old within sight and ensure he keeps the mischievousness to a minimum while around other patients in walkers and canes.
Drew has grown accustomed to his more restrictive braces. Although, they have proven to be quite the hassle to deal with. We have to remove them at least three times a day (dressing in the morning and evening before bed and for a certain (less frequent than #1) bathroom need. It doesn’t sound that bad, but it takes approximately 4.5 minutes to put them on. There are eight Velcro straps and Drew prefers precisely 4.32264663888 lbs of pressure on them (exaggeration to illustrate how picky he is about how they feel…but I’m not the one wearing them so I try not to quickly grow fed up…key word: try). He has to be lifted in and out of his braces and can I say that he’s pure cement and lead inside so just imagine lifting a large boulder. I’ve done the calculation over the next 10 years we will spend over 2,000 hours AT LEAST putting him in and out of the braces (4.5 minutes x 3 times a day x 365 days a year x 10 years).
I am currently contemplating customizations that I can make to shorts/underwear to minimize the number of times we have to remove and replace the braces. I’m thinking of a flap of some sort that can be easily opened and secured when not needed. He must wear his clothes on the inside of his braces because being in physical therapy, his braces come off in a populated gym and if his clothes are on the outside of his braces, they’d have to come off leaving him exposed (and, yes, I’m sure they have a private area to do this, but that involves carrying him around from room to room, so to simplify things, I prefer them to be on the inside.) I am looking forward to getting back to Kentucky so I can start experimenting with a few design ideas using my sewing machine.
But, it hasn’t been all craziness and misery. We’ve taken plenty of opportunities to break up the monotony and hard work in order to keep our sanity. Holden got to enjoy an indoor playground at a local mall a couple of times which was fun to watch. Drew got to get artsy in a craft store by painting me a coffee mug. We spent some time at a Sports Spectacular at the hospital for patients in which Drew got to try juggling, basketball, racecar racing, and some crafts and Holden enjoyed whipping people with flags. Before Daddy flew back to Kentucky, I got to take a “day off” as I did some window shopping and visited the beach, finally. It really helped rejuvenate my spirit in order to withstand the stresses of this week!