CCK, How Do You Feel!?!

Well, it took 10 weeks, but we finally received Drew’s braces.  And, this time it was quite the drama.

After numerous calls to the doctor’s office to rush paperwork and update requests to the orthotist, we finally had an appointment to fit Drew’s new braces.  And, just in time too because mid-week on Spring Break, Drew’s bar finally broke. I was amazed it had lasted nine weeks considering that the previous bars were breaking once a month or less.  It sucked to have happened during Spring Break, but it’s such a relief that it lasted as long as it did since it turned out to take 10 weeks to get this new set of braces.  The violent outburst would have been legend.

I was hoping with all of my might that we’d be able to visit Elizabethtown during Spring Break and spare another missed day of school, but alas, I should never be so lucky.  Even though Medicaid typically has a 48 hour turnaround for approvals once all of the paperwork has been successfully completed, some menacing forces were still in play as that 48 hours turned into nearly a week.  So, I was forced to pull Drew out of school early for a road trip to Elizabethtown to retrieve the new braces.

I always schedule the appointment late in the day so Drew will miss as little school as possible plus Elizabethtown is an hour ahead so it was around 3:00 Eastern (2 Central)  when we finally arrived.  The office was short-staffed due to the flu hitting the majority of the staff so the one technician there had taken on her own and her missing colleague’s appointments.

Drew’s new braces proved difficult.  She would put them on, Drew would stand up and give her feedback about how they felt: “It’s digging into my knee right here.”  So, she’d remove them, run them to the back, grind them or flare the edges, return and put them back on: “’s too tight there!” Remove, run, grind, return, put on: “It doesn’t feel right.”  6th time: “My heel won’t go in!” 11th time: “It hurts!”  This went on for several hours.  Put them on, something wouldn’t feel right, tweak them in the lab, put back on, something wouldn’t feel right, tweak, put back on, something and on and on and on.  During the long periods of wait while she tweaked the braces, we completed Drew’s hand therapy and did homework, read magazines, played with the tablet, etc.  But, still four hours later, we were no closer to having them feeling right than when we first started.    It’s a long drive to Elizabethtown and I really didn’t want to have to make a second trip, so I was bound and determined to get these braces right.

But, after two or three more tries, Drew’s patience level was maxed out.  He was starting to come apart at the seams and honestly, so was I.  I don’t have network at all on my phone once I’m east of Owensboro and I’m sure Daddy at home is starting to worry having expected me home by now.  I still had to drive 2.5 hours back home and it’s Drew’s bed time at this very moment so finally, at 8:15 pm, over five hours of attempts, I threw my hands up and said, “We have got to go.  We’re just going to have to come back.  It’s just too late.”  And we walked out exhausted and defeated.  We had NEVER gone to get braces and left empty-handed.  I was really worried these braces weren’t going to work.

Plus, Drew had been looking forward to a weekend camp coming up in a week and without his braces, it was seriously going to complicate things with his mobility jeopardized.

So, we arranged for another appointment with the original intended technician the following week and yet ANOTHER day of school early out, we drove to E-town once again.

This time was much better.  The technician noted several things that weren’t addressed the first time.  Evidentially during the 10 week wait, Drew had grown some (the 10 weeks started with them taking a mold of his legs and used the molds to build the braces around so they’d be custom-fit to his legs.)  The calf piece had to be tilted in the opposite direction, which in turn required a realignment of the knee joints, which in turn required adjustments to the thigh piece.  When we put them on the second or third time, we could see vast improvement to the fitting and with a final adjustment of simply moving a  strap on each brace up one inch higher, the braces were finally fitting Drew’s legs comfortably and Drew took off across the building to test the comfort.

20160421_110121It was magical.  Drew walking up and down the hallway after so much drama.  I repetitively asked him, “Are you SURE there’s nothing digging or rubbing?”  I did NOT want to make a third trip here for any adjustments.  Drew insisted they felt great and even as we made our way out to the car, I’d observe Drew and if he looked strained at all, I would sternly say, “If there’s something that doesn’t feel right, you better say something now!”  But, he was adamant they were great so we drove home and he’s been walking in them ever since.  He did have some minor pain on his heels from them rubbing a rough edge of an insert on his foot cuff, but I macgivered some gel inserts for women’s shoes and that seemed to ease the pain.

And, it was just in time because two days later we were off to camp!

A couple of months ago, I enrolled Drew in a special camp for kids challenged with various issues called Camp for Courageous Kids.  It’s free and its for the whole family, even siblings and it’s located in south-central Kentucky.  They have different themed weekend camps for Autism, Down Syndrome, Deafness and even things as random as Narcolepsy.  Well, I enrolled Drew in the physical disabilities camp where I knew he’d appreciate getting to relate to other kids with similar experiences as him.

FB_IMG_1461615083939We were assigned our own counsellor to assist us with any needs.  Ours was a very nice gentleman called Squirrel, but he was neither rodent-like nor furry but a soon-to-be-graduate of college who apparently had an appreciation for a furry jacket in high school that won him the nickname.   We had fun participating in all of the camp activities: bowling, arcade games, and Drew’s favorites, 012indoor swimming and arts & crafts.   The breakfasts, lunches and dinners were all awesome (and free still!) and, all in all, it was an amazing weekend.

20160423_101936I did notice quite a few fellows with braces, though no long-leg braces like Drew has, only below the knee ones.  And, there was one other kid (that I saw) that had a limb deficiency of one of his arms being missing below the elbow (presumably amniotic band syndrome).  But other than a handful of kids who were physically disabled largely due to severe mental incapacities, Drew was the only one 20160423_091524I saw with limb deficiencies.  I assume there were those with spine issues, CP, perhaps some MD, and other rare issues, but it occurred to me how rare Drew must be having such severe physical defects affecting all four limbs whilst having zero mental defects.

018The only real hassle of the entire weekend was Holden.  He is such an easy child at home, enjoying routine and consistent behaviors.  But, once we take him out of his usual environment, it just affects him mostly at night.  Friday night, Holden screamed his head off as we tried to soothe him to sleep.  It was approximately an hour and a half of him screaming his head off unrestrained frustration.  I’m guessing he was just having a hard time winding down from the day.  I expect his bedtime routine to be thrown off as it always happens this way when we stay away from home, but I didn’t expect him to actually wake up three to four times during the night, unprovoked, to fuss.  By the morning, I was tempted to personally apologize to each neighbor that was connected to our room by a thin wall; Hell, I felt like I should apologize to every person in the lodge because he didn’t restrain his frustration at all and I’m sure he was heard lodge-wide.

Saturday night, I was dreading the night drama, but I was tickled that Holden went to bed on time with zero fussing.  I was hoping that he’d finally acclimated to this new environment.  But, alas, he woke at 3:30 am raring to go so I was forced to take him to the gym, which was open all night, thankfully to entertain him so as to not ruin everybody else’s second night at camp.

Holden has a very strict routine and anytime it’s thrown off, he’s just different.  It makes it all the more stressful since we are frequently having to change our environment.  Such as tomorrow, as we travel to Cincinnati for Drew’s next doctor appointment requiring us to stay in a hotel tomorrow night.  This time, I’ll be taking both boys by myself as Daddy is having surgery in the morning.  I’m not looking forward to it.  In many ways, Holden proves to be more difficult to deal with than Drew (well, just his sleeping routine….otherwise Holden is a dream!)

And, here is a little collage of Drew’s hand progress.  I’ve been tracking his progress attempting a “Thumbs up” every Thursday (or Thumbsday, as I call it) and here is his progress so far:

Before surgery, After surgery and after two weeks of physical therapy.
Before surgery, After surgery and after two weeks of physical therapy.

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