I’m proud to announce that Drew is an official graduate of the intensive suit therapy program at Believe Therapy!
Drew completed his last day at Believe Therapy on Friday, February 3rd having completed 60 hours of intense physical therapy in three weeks. It would have taken around five months to complete the same number of hours of traditional physical therapy. Five months in three weeks.
Believe Therapy is by far the most impressive and most productive therapy Drew has ever undergone. The Believe Therapy staff is a very dedicated team that not only are advocates and professionals at the methods to target muscle groups and produce measurable results, but are supportive and genuinely care for their patients and offer endless motivation and pride to connect with each patient on a personal level.
In three weeks, I saw more results than ever before. Drew gained 20 degrees of range of motion in each leg. One of our initial goals in coming to this therapy was in this area. It was a hope of ours that Drew would be able to climb stairs, something that doesn’t come easily with legs that have limited bend. We also hoped that with increased range of motion that Drew would eventually be able to stand up from a chair or from any sitting position, something that is impossible with locked-in-full-extension legs (combined with short arms). In traditional therapy, we could go weeks and only gain a few degrees in range. In fact, Drew lost range of motion after
returning to Kentucky after transitioning Drew’s PT care from Dr. Paley’s to our local team (not meaning to imply ill-feelings for Drew’s team of equally loving and supportive team here…but as I’ve stressed before, Drew’s case is extremely complex.)
Drew also rode a bike for the first time, something else also requiring range of motion. Drew last attempted to ride a bike in August last year, but it was too soon after the removal of the rods and he had little to no bend in each leg. At the beginning of Believe Therapy, the staff debated trying Drew out on their own Freedom bike that they owned, but with as little ROM he had they reconsidered so as to not bring disappointment or waste time.
The last two days of therapy, after making tremendous gains in ROM, they decided to give it a try hoping that he’d at least get to rock the bike back and forth a few inches making for a good stretch. After adjusting the bike’s settings and slowly pushing the pedals so as to not OVER-bend causing pain or even worse, a break, Drew cautiously made a full rotation on one side. We were very excited! Then, after a few minutes of cautious movement and feedback, Drew began to make full rotations on both side actually propelling the bike on his own.
We were ecstatic! My Drew: riding a BIKE!!! I was nearly in tears and Drew beamed with pride and excitement at having performed such a normal feat for anybody else. But for Drew, this was a huge accomplishment. Drew already began planning all of the places he was going to ride his bike to once we got home and Daddy excitedly announced that he’d love to go on runs with Drew pedaling behind! Last summer, I had started to fill out an application for a charitable group to pursue a donated bike since the bike that Drew would require due his short arm length was around $5,000, but I abandoned it midway because I came to terms that it just may not be in Drew’s cards. But, seeing Drew pedal his way around the building, fighting exhaustion so he could ride longer, I resolved myself to pull that application back out and finish it up!
Drew also made vast improvements in walking. At the beginning of therapy, one of our “loose” goals was to walk without Drew’s braces. And that was a huge focus in the first 6-7 days. He started by taking two steps sans braces. Then it was nine. Then 15.
This was one of the hardest parts of therapy to watch because it was evident exactly how intense it was for Drew. His legs would not only shake, they’d vibrate. His face was contorted in pain and sheer will to not suffer a catastrophic collapse beneath his weight. Between held breaths and gritted teeth, he moaned and grunted. Sometimes his body would give out and he’d fall back onto the bench beneath him in defeat.
Watching him from my perspective, it became evident just how important Drew’s braces are to him. When Drew took steps without braces, while being supported by one of the therapists, Drew’s legs below the knee would bend inward at an awkward and unnatural angle. He literally looked on the verge of breaking his leg at the knee at any given moment. Should he suddenly collapse from exhaustion, his whole body would come down snapping his leg at the knee at it would fold underneath him in a direction it shouldn’t bend. If we were to trip, we stand the risk of twisting our ankle. But, from the looks of Drew’s wobbly and weak looking knees, one misstep could be devastating.
I grew concerned from watching Drew teeter on the edge of breaking his legs and I’m sure having once actually watched his leg be broken made me a little more fearful than average. I shared my new concerns with the therapists and they too saw what I was seeing and agreed we needed to amend his goal. We didn’t change the therapy routine, but just framed it differently for Drew. Instead of sharing with Drew our hopes of him walking without braces, we spoke of walking in his braces, but with them unlocked (which will still keep his legs in proper alignment.) At first, Drew was concerned because he too wants to ditch the braces, but we explained that while his ultimate farther-in-the-future goal would be to walk without the braces, he couldn’t meet that goal until he achieved a series of smaller goals such as walking with them unlocked. So we continued with therapy outside of his braces, but we back-pedaled on our measurement for success.
In seeing the reality of Drew’s weak knees, it hit me that perhaps I’ve not been truly honest with myself about Drew’s capabilities. I don’t think I’ve had expectations that he’d be completely “normal” – having undergone corrective surgery and then walk as if nothing ever happened. But, maybe I did have unreasonable expectations after all. It just hit me one day and I thought, “Wait a minute…have I been thinking he can be born with physical disabilities as extreme as this and then in just a matter of a series of surgeries then it all goes away?!?” I mean, even those who have more routine and less life altering issues have some sort of fallout of surgery: some loss of range, muscle weakness, arthritis, “never being the same.” Why would I think that Drew could have 10 leg surgeries and then he’d be running a marathon next to Usain Bolt? Of course, Drew is always going to require adaptations. This isn’t to mean he’s a failure or disappointment, but that he does have a max potential in regards to the physical manner of taking steps (he can surpass the emotional component of determination, positivity, etc.) So, it makes me think that I should be careful how I speak with Drew about any type of physical therapy: that it may not help the problem go away or help him achieve every single possible thing he can think of, but that it will help him maintain strength and ensure he’s performing at his best ability.
In seeing just how hard he’s working after last summer’s surgeries, it also made me realize that further corrective surgeries may not be as easy to agree to. As I said, I imagine Drew has a ceiling. There is a max potential. I don’t want to continue to subject him to corrective surgeries for a unicorn (something that doesn’t exist). His left leg is shorter than the right requiring a shoe lift, but will additional surgery further detract from his current abilities as he learns to adapt to a weaker leg? There are tentative plans to do a surgery on Drew’s left foot due to his foot deformity (which no doubt was the source of most of his heel pain throughout the three weeks), but should we reconsider since possibly it could either not really improve his ability (therefore pointless) or, even worse, make it harder?
Ah, such is the life of a special needs child. It’s never easy and answers are never clear. And, on the last day of therapy, having started some walking with his braces ON and UNLOCKED, Drew took 347 steps, blowing his previous attempt away!
Even though our goal ended up having to be amended, the therapy was very worth it and we’ve already agreed as a family that Drew would make a good candidate for repeat sessions. Well, not so much “as a family” as much as “me and Daddy agreed” because Drew said, “noooooooooo!”
Anyway, we all survived the three weeks. It wasn’t all physical therapy. Drew got to:
- ride in a helicopter
- went to Disney World
- went to Wonderworks
- played at Dave and Busters
- visited the Orlando Science Museum
Florida 2017 Slideshow
It was a productive and fun three weeks. But…BUT…don’t think I’m not excited that it’s over and both boys are going to finally return to school tomorrow. I am looking forward to an empty, quiet house. I’m so torn whether I’m going to sit on my ass all day or find some creative outlet to expel my pent-up anxiety.