Gaining Momentum

January 2016 (pre-rods surgeries) to August 2016
January 2016 (pre-rods surgeries) to August 2016

Drew just finished up his sixth week of physical therapy.  Drew has come a long way since the beginning of this summer: his legs went from perpetually bent to completely straight and he’s gone from complete weakness from unused muscles and abilities to just beginning to stand on his own and even attempt steps by himself.  He’s gone from relying heavily on a harness system to bear most of his weight to, today, starting to 20160823_105323 make arrangements for his own walker.   Today, Drew walked several steps almost completely on his own with only the occasional “comfort touch” of a nearby parallel bar.  It’s reassuring to see him continue to gain strength and start to bounce back; All of the sweat and tears are starting to pay off.

That’s not to say it hasn’t been without its challenges.  Drew still struggles with endurance, only able to stand and maintain his balance for 30 seconds to a minute at a time before his legs involuntarily shake from the exertion.  He still doesn’t tolerate his knee bends very well, screaming and crying in pain during each stretch.  And, while his left leg continues to grow in range, reaching 75 degrees, his right leg has plateaued and a couple of terms even regressed, wavering between 40 degrees and 55 degrees.

It is unknown why Drew’s right leg is proving so problematic.  The therapists have reviewed his x-rays and nothing is evident to be causing the regression.  But, I’m anxious to see Dr. Paley to discuss this development in his progress.  Anxious as in can’t wait and dread it.

So, barring any surprises, we should be home in a couple of weeks.  We do still have the leg length discrepancy in his left to contend with, but hopefully he can just live with a 1.5 centimeter difference or at minimum, wait until another summer to give ourselves a break from the stress.  And now, it’s a waiting game to see how Drew’s range of motion, or lack thereof, in his right leg may call for intervention.  So, that’s why I add the “barring any surprises” caveat.

One issue that has reared its ugly head this week: insurance coverage.  We are blessed to have good health insurance that covers Drew’s many surgeries, even in a different state.  But, they do have their limits.  Our insurance only covers 30 sessions of physical therapy and 30 sessions of occupational therapy per calendar year.  Today, we completed his 28th visit.  We only have two more covered sessions and Drew is JUST NOW starting to gain momentum.  He is nowhere near graduating from therapy.  As excited as I am to see him attempt to take steps, it would be detrimental to Drew’s progress to discontinue his therapy.

Words cannot describe how frustrating it is to be on the cusp of exceeding insurance limits of therapy.  I’m sure 30 sessions for more routine and less invasive surgeries is sufficient.  Physical therapy isn’t uncommon and I’m sure that 30 sessions of PT is reasonable for less specialized surgical procedures, but what Drew is enduring is far from routine.  He had his legs surgically rotated a completely different direction, surgically corrected to extend in a way that isn’t natural for his anatomy.  Drew started completely disabled.  He started from 0%, never having walked beforehand.  So, how can he be held to the same standards as an average-abled person who suffered a set-back in their ability?  How can Drew, who has endured 10 corrective leg surgeries in a combined seventeen-month period to gain abilities that didn’t even exist before surgery fully rehabilitate in the same amount of time as someone who undergoes one surgery to bounce back to their original abilities?

How can an insurance company unquestionably cover multiple surgical procedures that cost hundreds of thousands of dollars each, yet balk when it comes to covering the physical therapy needed to rehabilitate?  It’s a bit like buying a car and never having the oil changed, tires rotated/changed, engine serviced, etc.  Paying hundreds of thousands of dollars for surgeries yet limiting the therapy needed to acquire the benefits the surgeries were designed to provide is just as good as lighting your money on fire.  It’s all gone and now you have nothing to show for it.

So, in a panic, I’ve been working on getting additional sessions covered.  We’ve gotten additional sessions before (and once we return to Kentucky, we’ll have Medicaid-covered physical therapy for a limited amount of time – something we can’t take advantage of here in Florida, who doesn’t accept KY Medicaid).  But between the inability to reach critical contacts and relying on staff members who contend with hundreds of other patient families and their insurance needs a day, it’s been slow going.  We’re on the cusp of having to either discontinue physical therapy (unacceptable) or continue therapy as self-pay, and at a rumored $250/hour, not feasible.  Panic attack ensues.

The truth is, we don’t even know how many additional days/weeks/months of physical therapy is needed.  I don’t know what Drew’s long-term expectations are.  But, we’ve run out of physical therapy coverage before and we had no choice but to discontinue therapy.  Then, his therapy was simply for preservation so it wasn’t detrimental to his progress,  but currently Drew is far from reaching his max potential and it would be detrimental to stop now that he’s starting to take strides in improvement.

I’m trying to get some occupational therapy sessions switched over to physical therapy (because we have 30 of each), but one side of the business says it’s not possible while the other insists it is and while I’m trying to encourage one side to just prepare the letter as requested, it’s proven difficult to get both sides to speak to each other without me being the middleman.  And, since we’re on the horizon of no physical therapy, something needs to happen sooner than later.

I’m also penning a letter to the name-bearer of my husband’s company in hopes that our sob story will inspire some pull from industry leaders will change the insurance limits to better suit Drew’s needs.  I just hope this plays out because I’d hate to get to this point to only stall and then regress…

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