Believe Therapy Week 1 – Check!


Well, five days of Believe Therapy complete and what a week it was.  Each day was full of relentless labor, drenching sweat and even occasional tears as Drew was pushed to the absolute limit, and even slightly beyond by a dedicated team of therapists with merciless motivation, endless energy and pure love and support for Drew.

16142437_10155175824069505_7511243170537691951_nEach day is a rotation between myofascial release (MFR) therapy, the therasuit and the cage.  Drew does his therapy alongside a fellow friend in the same rotation, each assigned to a task during a block of time and then rotated to the next task on the agenda.  It’s only Drew and his friend so the environment is mostly informal and we cheer each on in their hard work throughout the day.

Drew really loves the MFR therapy which involves therapy massage of the spine, legs and occasionally the shoulders.

According to

Myofascial Release is a safe and very effective hands-on technique that involves applying gentle sustained pressure into the Myofascial connective tissue restrictions to eliminate pain and restore motion….surgical procedures create Myofascial restrictions that can produce tensile pressures of approximately 2,000 pounds per square inch on pain sensitive structures that do not show up in many of the standard tests (x-rays, myelograms, CAT scans, electromyography, etc.)

img_1303So, with gentle, pulling pressure, she focuses most of her attention on his largest scars and explains to me that surgery and scars can cause this tissue to create tension that pulls on the myofascial connection tissue in other parts of the body creating tightness and lack of range of motion – kind of like pulling on a rubber band.  The MFR therapy helps lessen the tension.  Dayna was able to acquire a significant release after just two sessions which helped Drew gain four degrees of flexion.

Monday Dayna was able to manually push Drew’s leg into flexion (bend) to 51 degrees.  After the MFR, Drew was able to bend his leg to 55 degrees without any therapist manipulation, 59 degrees with Dayna pushing.

The goal of increasing Drew’s flexion is to ultimately allow Drew to stand up from a sitting position, something that is currently impossible due to his lack of flexion.

Julep providing some distraction.

After MFR, Drew is typically put into the Therasuit which Drew grew to hate.  The Therasuit provides 20 pounds of weight to Drew via multiple stiff rubber bands that pull and provide resistance in all areas of his body so Drew is pulling against these bands that are pulling in an opposite direction increasing the amount of effort thus an intense strengthening exercise during his walking or exercising.  This extra effort, of course, makes him hot and sweaty.  The intense muscle strengthening gets exhausting and Drew eventually begins to experience pain from the unusual amount of labor he’s performing.  This makes for an uncomfortable and miserable exercise as Drew begins to weaken and want to give up, but the therapy team is doing their best to continue to push his limits so he can go farther each day.

This is the hardest part of the day physically (for Drew) and emotionally for me.  The work is extremely taxing on Drew and after such intense labor, going past what he’s used to, his heels become extremely painful.  Drew is utterly exhausted, barely able to support his own weight, legs shaking from agonizing exhaustion.  His heels, especially his right, throb in pain and he begs profusely to sit down, barely able to utter a word between his tears and gasps for breath.  He is so panicked at times that he barely responds to our consoling.  But, despite all of this, he is pushed to endure the pain and exhaustion to meet his goal.  He is not permitted to give up.  And, as his  mom, it kills me to not step in and provide him the relief he so needs.  It’s physically hard to withstand watching Drew breakdown under the pressure of this  work and to just sit by and let the work continue.  It brings me back to the days of making the daily adjustments on his external fixators, slowly and excruciatingly rotating his bones, directly causing my precious boy’s pain.

Foot massage after a long day!

In the end, Drew makes it to the end of the hour.  His legs are obviously weak from the over-exertion.  He has experienced no greater relief that removing that Therasuit and his socks for fresh cool air and relaxation for his first 15 minute break.  And, despite having been pushed past his limit, the second half of the day begins and Drew is in higher spirits and somehow has enough strength left to do the remaining exercises nearly complaint-free.

In the matter of hours-wise, Drew completes 20 days of regular therapy in five days, but in the matter of sheer physical exertion, I’m sure it’s much more than that.  No offense to any of Drew’s previous physical therapists who are qualified, friendly and motivating individuals who I would highly recommend for physical therapy for your more “run of the mill” types of recoveries, but regular therapy is tame compared to what Drew is undergoing.  I already feel like I’m becoming a physical therapy snob!

If you are especially interested, check out this series of videos I put together of Drew’s special therapy.  I videoed short clips of each segment of Drew’s therapy, but it is a four-hour day so even in its shortened form, the videos all add up to about an hour’s of playtime (and YouTube video manager only allows me to create 15 minute videos so I apologize for the multiple links):

Video 1 – MFR

Video 2 – Therasuit

Video 3 – The Cage

Video 4 – The Cage (Drew’s favorite part of the day)

Video 5 – The Cage Part 3

So, he’s completed one week and believe me, he was looking forward to a break finally.  All in all, it’s been better than I expected.  I was mostly worried about all of us staying sane in the confines of our room at the Ronald McDonald House.  Of course, at home, the boys have a wider range of freedom.  Holden mainly enjoys a wide area of play often going room to room playing independently.  Should he grow over-stimulated by an excitable Drew who is very…animated…when playing video games, Holden can go to a quieter area of the house to decompress (me too!)  But, our range is substantially decreased here at the RMH.

At home, the boys go to bed in their rooms, freeing up the living space for me and Daddy to catch up on our child-inappropriate TV programs, enjoy an adult beverage, or just decompress from a day of child-bearing without fear of waking up the boys who sleep soundly behind closed doors.  But, now, both boys sleep in the same room, just feet from us so we still can’t turn on Game of Thrones for fear of Drew sneaking a peek or waking them up.  So, the boys’ bedtimes ended up being our bedtimes which isn’t the worst things because I can always use the extra sleep.  But, I do crave some Game of Thrones, wine and the increased personal space that comes with two sleeping boys.

And I’m happy to report that Holden sleeps well through the night as I worried that this change in routine and environment would affect him in frustrating ways as it has in the past.  But, the pack and play in the corner seems to be working, even though he barely fits in it and we have to wake HIM up in the morning.  And he goes to sleep cooperatively at a reasonable time as well.  Holden is well-behaved at the therapy gym thanks to some fun toys they have available that he enjoys quietly in a corner for the full four hours we’re there.

16142307_10155179678264505_7758290477983578939_nNot to overburden Drew with all work and no 16105715_10155180005124505_4200427187602032999_nplay, we did take advantage of our downtime throughout the week.  The weather is warm and perfect so we took a stroll around the park a block away from the RMH and enjoyed the local fauna of Florida.  We walked around the lake and admired the cranes and other animal life we don’t see in Kentucky.  We drove to downtown Orlando on another day and perused the grounds of Lake Eola National Park taking a paddle boat ride and played in a playground for some much needed sun and fun.

A stylized photo I took of Lake Eola.


16142598_10155188193889505_4959141102609076068_nWe revealed our plans for a helicopter ride to Drew during the 16142927_10155188252004505_3667507214099092873_nweek to which he was extremely excited and we just returned from that adventure.  It was a blast and Drew was all smiles.  The pilot made some sharp turns making for a heart-stopping ride.  In the middle of the flight, the pilot asked if we were ready for more fun, which I assumed meant we were going to fly over another Orlando location for a unique view, so we excitedly said, “Yeah!”  Well, not sure exactly what happened because I suddenly and involuntarily squeezed my eyes and tight as they would go and screamed bloody murder as the pilot evidently took a nose dive for some small number of feet (but felt like a thousand) in a stomach-dropping weightless descent.  Drew thought it was the greatest and even though I SAID I didn’t like the turns or the sudden drop, I really did have a blast with Drew.  Next up on the agenda, tomorrow, is Wonderworks.


And, I’m so excited to share that the RMH managed to arrange for a donation of four tickets to DISNEY WORLD!!!  Which is a huge relief.  We were always planning on going to DW despite the astronomical cost because it’s pretty much the only big surprise we can pull off for Drew for his upcoming birthday at the end of this therapy program since we’re here in Florida and can’t plan for a party.  But, the stress that came with shelling out so much money at a time that we took a loan out to be able to afford this therapy was troubling.  But, not to disappoint or shortchange Drew, we were going to bite the bullet.  So, I was immensely shocked and grateful to have been given this opportunity to go to Disney World in high spirits and it turn out to be a positive experience!  So, that’s our plan for next weekend though Drew doesn’t know yet.  I’m pretty sure he hasn’t figured out that Disney World is in Orlando so my plan is to pull off the ultimate surprise.  So, this week, I’m trying to draw up a route throughout the best and most accommodating rides so we can get as much done in one day as possible (only going to Magic Kingdom…and maybe we’ll decide to go a second day at our expense since we were blessed with one day tickets)  I can’t wait!


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