Countdown to Special Therapy

T minus two weeks.  Drew’s specialized therapy begins on Monday, January 16th and the real work begins.

Even though I have been a strong advocate for this therapy for Drew, I did ask myself if we were going to excessive lengths for Drew’s needs.  But, the battle for traditional physical therapy has secured my confidence that I must make an excessive effort to maximize therapy for Drew.

Drew reached our insurance’s maximum limit on covered sessions in July.  JULY.  And he used all allotted sessions (30) in six weeks.  His correction process from beginning to end took eight weeks so lets not ignore the fact that he had fewer weeks worth of physical therapy than the corrective process took.

He was under strict restrictions for EIGHT WEEKS for no weight-bearing or therapy while Drew endured three major surgeries to correct the extension in his legs unlike the average orthopedic patient Drew exercises next to whose corrective process involved a surgery to repair whatever injury, suture up and done in a matter of hours.  Drew’s process took EIGHT WEEKS.

So, Drew used up his 30 sessions of insurance-covered sessions before we even returned home to Kentucky.  After escalating the issue to appeal for more, they gave us 30 more.  Those were used up by October at which point Kentucky Medicaid approved six sessions.  SIX.  SIX hours of therapy.  *Insert unimpressed and annoyed emoticon here*  The kicker is, only AFTER Drew has used up the six sessions can additional sessions be requested.  This means an interruption in therapy because we can never expect the government to handle requests quickly with all of the paperwork and man-hours required to follow the process.  Two weeks before we finally had more sessions approved: twelve.  And, again, we have to use up all of the sessions before requesting more thus another interruption.

So, even having access to physical therapy is tedious and full of  obstacles.  So, please forgive me if I have an underlying annoyed tone in my voice if I ever have to explain why we are trying out this specialized therapy.  The answer is:


  • This specialized therapy is specifically designed for pediatric patients with genetic conditions
  • They perform four hours of therapy each day, five days a week for three weeks.  Traditional physical therapy would NEVER be able to accommodate a schedule like this.
  • Because they have such an intense program as well as special equipment designed for kids with genetic conditions, they are able to produce results in a fraction of the time.

It’s not that traditional physical therapy is “sub-par” or incompetent.  I’ve seen patients at our local hospital come into PT weak and sore and they walk out strong and back to their ol’ self.  They have a variety of equipment to target areas and help patients regain their strength.  Traditional physical therapy is very effective for patients with traditional problems.

I don’t mean to diminish the pain and struggle that those who exercise next to Drew endure, but it IS different from what Drew endures because Drew was born differently, with a unique set of obstacles and requires extraordinarily complex surgeries that one can’t just find anywhere.  One can go to ANY orthopedic surgeon to repair a torn ligament, but Drew’s corrective surgeries are so exceptionally complex that it took FIVE specialists – a minimum of 160 miles away to over a 1000 miles away – to find one who could handle it.  Added together, it took 14 months of correction to get Drew’s legs even in a position to even THINK about walking.  And, when I say, “14 months of correction” I mean that it took five months to straighten Drew’s right leg (with a 5-6 hour surgery), seven months to straighten his left leg (with a 3-4 hour surgery) and then two months to straighten them AGAIN (with a combined 6-8 hours of surgery.)

So, yes, Drew requires a different type of therapy.  And, unfortunately, it is extremely difficult to get access to therapy thus getting an opportunity for bigger and faster results in a fraction of the time is attractive to us.  We don’t have access to unlimited physical therapy so we gotta pack as much in in as little time as possible so that’s what we’re doing.  Like, squeezing in six months of therapy into three weeks.

OK, enough of my soapbox 🙂

20150516_200522Now that we’re in the home stretch leading up to this therapy, we have a checklist of tasks to complete before we leave.  They recommend long loose pants.  Drew only wears shorts because long pants are so cumbersome to get over his braces so we’ll have to go buy some (he’ll be doing therapy without his braces.)  And, it just occurred to me last night that he’ll even need a new pair of shoes.  The shoes he has fit over his braces thus they will be too big to fit his feet.  And, in typing this very paragraph, it occurred to me that the new shoes will have to have a shoe lift because of his limb length difference (the left is 20170101_180811shorter than the right) so I just had a “I’m freaking out” moment.  So, on my checklist this week: either find out if insurance will approve a second pair of shoes with a shoe lift or perhaps jerry-rig a shoe left myself using foam sheets and duct tape (duct tape fixes everything, right?)

In realizing that Drew will need a new pair of shoes to fit his actual feet, I also contemplated how Drew’s malformed foot would even perform.  He has a wicked arch on his right foot and traditional shoes certainly won’t accommodate such a severe arch and I’m pretty sure there aren’t even any Dr. Sholl’s shoe inserts to fit this thing.  So, now I’m worried that his foot will hinder his therapy with pain or inability to support his weight.  Aye aye aye!

And, what if Drew get sick?!?  If he misses a day of therapy, it’s not like traditional therapy where we have unlimited number of days to reschedule it.  This is a three-week program, Jan 16th – Feb 3rd.  So, would they be willing to add Feb 4th?  Or do we get reimbursed for a day of therapy that isn’t completed?  I can only hope that since Drew just recovered from a head cold recently that he’s had his illness and will remain virus-free at least until February 4th! *crossing fingers* *knocking on wood*

T minus 2 weeks!



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