We’ve been anticipating this specialized therapy for a few months, but it still seemed to sneak up on us out of the blue. And, not to be out done, “life” was bound and determined to make this trip as stressful as possible starting with a miserable head cold making its way through the family one by one back in December causing me worry as to interfere with our plans or at the minimum, work against Drew in order to ruin the potential of this therapy and financially harm us.
So, with the illness checked off of the “let’s screw with Janel” list, I figured it was actually perfect timing: that way we got the sickness out of the way with enough time to recover and be full strength by the time therapy time began. And, life said, “Hang on. Hold my beer.” The day before departure to Orlando, little brother, Holden, develops a runny nose and by the evening he’s starting to cough. NO!! YOU WILL NOT GET SICK! I demanded. But, alas, he was. He woke up early in the morning, because, you know, we just can’t let mom and dad get good sleep before their cross-country trip to Florida. Holden had a terrible cough and his breathing was raspy and fast-paced. I tried to pretend that it would go away if I pressed my eyes together as hard as possible and wished it away. But, it was evident that Holden needed to be taken to the ER.
So, here we are the ER, within two hours of hitting the road on a 12-hour road trip with a sickly boy. The ramifications of this circle mercilessly through my mind: cancellation of therapy, worsening of Holden’s sickness, getting Drew sick and interfering with his therapy. Chest x-ray and breathing treatment complete, Holden is diagnosed with pneumonia. Just great.
I toss around the idea of Holden hanging back with Daddy for a few days and meeting us in Orlando once he’s better, but the doctor assured us that with medication and preventative measures, Holden would be fine as long as he wasn’t coughing. Luckily, while I tended to Holden at the ER, Daddy took a chance and loaded the truck for our road trip hoping that thinking positively would help fate so by the time Holden got discharged, we were ready to hit the road.
Our goal was to make it past Atlanta, but about 75 miles from Atlanta, a little over five hours on the road, Holden had had enough of it so we stopped in Northern Georgia for the night. The boys went down quickly, even Holden who was taking steroids and breathing treatments that I was told “might make him wired.”
We drug ourselves out of bed in the morning, French toast and omelets at IHOP, and on the road again. Holden appeared to already be in better health with a dry nose and almost non-existent cough. The road trip drug on and on for over seven hours, but we finally arrived in Orlando exhausted and never wanting to look at the truck ever again.
This time around in Florida we’re staying at a Ronald McDonald House. I’ve stayed in my share of RMH’s: Louisville, Nashville a couple of times, Cincinnati and now Orlando. We love RMH. They have the friendliest staff. Groups come in a cook dinner for the residents each night. They have tons of snacks and pantry items and cheap canned drinks. The rooms are clean and the atmosphere is light, loving and supportive. Not to mention the very affordable nightly rate which helps during long trips such as these.
As we first entered the house and as we announced our presence, a family came through the door behind us. They were pushing their young son in a wheelchair. Seeing Drew in a wheelchair, they asked if we were here for Believe Therapy. We answered “yes” happily realizing that we probably have found a friend for the next three weeks. They asked us where we were from and we responded, “Kentucky.” “Us too! We live in Owensboro.” Me: SHUT UP!! We live in the county right next to you!” Small world!
We got to talk to each other and share about each of our kids at dinner last night. I told them all about Drew and his arms, legs and surgeries. And, I asked them about their son, who appeared to me to have a different set of challenges than Drew. And, y’all, words cannot describe the shock to learn that this young boy was a victim of Shaken Baby Syndrome as a 7.5 month old by his babysitter. There are no words to describe the utter sadness and anger that soared through me hearing their experience of a perfectly healthy and happy baby ahead of all of his milestone to have been shattered at the hands of a person ultimately leaving this boy with no control of his body, almost not interaction with the outside world, and taking his feeding through a tube in his stomach. You know, as a parent of a child with special needs like Drew, at times I feel alone since I don’t have really any close friends who can truly relate to what we go through so for short instances, I sometimes feel like I have it the worst and then I remember that it could be much worse. My heart bleeds for that family whose had it so good with a thriving child and now, here they are living this life – they love their boy immensely, sure, but they didn’t sign up for this. This was not in their cards. The unfairness of it all didn’t escape me.
We retreated to our room for the night, unpacked and settled down for sleep. We all slept really good through the night and while we thought we had planned for enough prep time and breakfast time before therapy, we found ourselves rushing through the routine in order to avoid being late. Our trusty GPS guided us to our location and in we walked to therapy, not sure how today would go.
Leading up to therapy, Drew has been apprehensive about it and it would be a lie to say that I wasn’t right there with him. When I first learned of this therapy from a fellow TAR mom whose son went through some of the same surgeries that Drew has endured, Drew was four and just one hour of therapy was mostly moaning, argumentative, resistant and frustrating. The thought of four hours of therapy a day was beyond impossible.
Given changes to insurance, Drew was able to get two hours of therapy and it was exhausting. He was far less argumentative and resistant, but he did lose focus and required a lot of motivation and guidance to endure both hours as well as battled exhaustion followed by loss of motivation. How would he endure ANOTHER two hours of therapy?
It was something I worried about non-stop. What if it’s too aggressive? What if he gives up and we lose so much?!? Drew was worried too. “Four hours a day?!? It’s going to be so hard!” I coached him to think positive, have an open mind, think about the big picture, not forget it’s just for three weeks, etc. But in my mind I was near panic attack thinking that we were taking a second mortgage out on our home only for Drew to stage a revolt and making this process come to a halt at the cost of our sanity and personal debt.
In traditional physical therapy, I’m wound pretty tight and constantly micro-managing Drew and his effort because every hour covered by insurance or Medicaid is precious in my eyes and it pains me to see time wasted. I want Drew to reach his goals and we have an extremely limited amount of time to reach them so any time I see him stalling an exercise for the interest of playing absolutely makes my blood boil. But, now that we are pulling both boys out of school, driving over 1600 miles, paying for a room for three weeks, paying $7,200 out of our pocket I knew my anxiety was going to be worse.
The day began with a tour of the facility, a space in an outlet mall type of place. There’s nicely decorated lobby. The therapy gym and a back area of office work, bathroom and kitchen. We started by getting to know the owners, a pair of girls – one from Miami, Dayna, and one from our ol’ Kentucky home, Lexington, Trevor (yes, she’s a female.) We are doing therapy one, maybe two other families and each of us rotate therapists throughout the four-hour day. We spent the first hour going through Drew’s extensive surgical history and life with TAR. Then Dayna did some light stretching and measuring to see what Drew was capable of. She watched him walk through the gym, nervous mostly watching him sway seemingly microseconds from face-planting the floor.
She performed some special “myofascial release stretching” which is apparently a part of the muscles that can make the muscles tight and limit their ability. Then, Dayna started suiting him up in the therasuit which is a suit worn around the trunk, abdomen, knees and shoes all connected with quite a few rubber bands that provided resistance. Drew said he looked like a candy cane. Daddy suggested a jihadist terrorist. And I said he looked like a stunt parachute preparing for a death-defying stunt for the circus. The weight of the suit was said to be 20 pounds of extra weight. Drew walked around in the suit, obviously feeling the effects of the bands pulling forcing him to engage his muscles in a way that has never been expected before.
After two hours, he was allotted a two-hour break then we switched therapists. Drew started his cage therapy. This is where it started to get real. Trevor strapped a brace around Drew’s ankle, attached a cord to it and with a system of pullies and weights, Drew performed leg lifts and abduction exercises. The unique feature of these exercises is the efficiency of the exercise using braces to avoid cheating on the exercise. The pully and weight system provided a consistent amount of resistance whereas traditionally, a stretchy band is held by a therapist and it is quite difficult to withstand the pull and often resistance is lost if the therapist isn’t able to completely retain tension. The pullies and weights also freed Trevor’s hands so she could guide Drew’s legs and ensure a proper repetition unlike in traditional therapy where most of the trust relies in the patient following instructions.
After those exercises, Trevor moved Drew over to another cage system where she strapped him into a harness and then attached eight bungee cords so Drew looked like a puppet. He bounced almost weightlessly, held fast by the bungee cords. He practiced balance by swaying back and forth and even enjoyed getting from a sitting position to standing thanks to the assistance of the bungee cords. He was able to bend his legs and bounce to “ooch” his legs underneath him eventually scooting them inch by inch until he was able to stand up. Even though it wasn’t traditional or unassisted, I was still very moved at seeing him go from sitting to standing without a person doing the lifting.
Then he got to jump on a trampoline which was his favorite part of the day if you were to ask him. He got to stand and jump on it thanks to the bungee cords and it made my heart smile to see him stand so tall, ever so slightly bend his legs and actually jump. It was so moving as any jumping he does on a trampoline otherwise is done sitting down on his butt. It moved me so watching him do these things that are so normal for everybody else, yet something that is such a magnificent accomplishment for Drew that I’ve either never seen done or thought possible. For typical parents, these things are nothing to recall…just part of a normal day. But, seeing Drew jump on his bare feet? I mean, it’s like seeing a meteor shower, a fireworks show, an amazing Blue Angels show….I was awe-struck.
Next came walking on a treadmill in another cage system, still attached to cords to alleviate some of the weight-bearing. This was my favorite part because Drew walked so tall and “normal.” Walking with locked leg braces makes for a unique gait. Don’t get me wrong, I love that he walks, waddling like a penguin or not. But to see him walk with this feet together, bending his legs in a natural gait pattern, with a stable and strong trunk was another moment of me being awe-struck.
By the end of the four hours, Drew was profusely sweating and he was spent. He had gone four hours of the most intense therapy I had seen him do. He was so ambitious the whole morning asking for more weight for more of a challenge. He absolutely gave 100% of himself – no argument, he remained focused and cooperative. Towards the end of the four hours, he was pretty exhausted and was requesting a small break more often than at the beginning, but he’d quickly get back to it until the final exercise in which he was absolutely spent. He said his favorite part was the trampoline and getting to pet Trevor’s puppy who was visiting. He also said he regretted thinking this was going to be so hard and thinking it wouldn’t be fun!
There are no words to describe the level of relief I feel. I feel so optimistic and I look forward to tomorrow and next week and I really truly feel that we will see Drew do some amazing things. Only one day done and I feel like we are ready to conquer the world!