Thursday, May 31, 2012

Legs, Legs, Legs!

As most of you already know, Luke is a toe walker.  He wasn't always.  We first noticed that he just couldn't get flat when we moved back to VA in late 2010.  Thinking back and looking at photos he started toe walking when we lived in California.  I guess all of that sun, sand, and flip flops just let him rise up on his toes.  Then getting to Virginia when it was cold he was wearing boots and jeans most days so it really covered up the situation.  When he'd be home and barefoot we'd ask him to walk flat foot.  As the months passed his version of flat foot started to include sticking his butt out as he walked.  Then a few months later he's say, "ouch, ouch, ouch" with each step.
I took him in to see his doctor who wrote it off.  I went back a week later and another doctor took me seriously, and put in a physical therapy consult.  We waited months to get into physical therapy so of course he got worse.

We learned that Luke was a toe walker due to short Achilles Tendons.  When I speak of 'range' I'm using the scale they taught me.  Here's a quick rundown.  Negative range is on the toes, Neutral is flat foot, and Positive range is being able to get the toe up high above the heal.  Luke was -15 on the left foot and -15+ on the right.  (I think their measuring tool only went to 15).  "Normal" is +15 with a heal to toe walk.
We did therapy for a few short months and saw some improvement and we saw an amazing Orthopedic Surgeon at CHKD.  He recommended continuing therapy and let us know that surgery (if done now) would need to be repeated every year or two because every time Luke grows, his tendons would be too short again.  He said no matter what, he will most likely need surgery at 10-12.  Then Luke's therapist quit, we went back on the wait list, he lost range, and we were back where we started.  But we had AFOs made, we fought weekly to get a better fit.  Never did they actually work on him, so after 2 months we gave up and went back to the Orthopedic Surgeon.  He gave us two options, putting Luke under and stretching him as much as he could and casting in that position or get back in therapy.  Of course we did not want out baby on the operating table, surgery or not so he did everything in his power to get us therapy at CHKD asap, bypassing their HUGE wait list.  CHKD is the best, everyone wants to have their kids seen there, so we were grateful!  Sure enough, he came through within a week.  So quickly I was still fighting our insurance, and rallying prayers from anywhere I could get them.  God does things in his own time though and the day of the therapy, as I'm prepared to write a $400. check to not lose that precious spot, I get a call that the insurance went through.

Luke's therapist is amazing, he does so much at therapy now that he never did at the old location.  We were not welcome to go back at our old location, here we are encouraged to get involved.  And we have a 1 hour slot once a week, we are making huge strides!  Luke was very close to neutral!  Then his therapist recommended serial casting and the Orthopedic Surgeon signed off on it quickly.  We were told there was a wait list for that as well.  So I didn't stress about the insurance going through right away.  Two days later they had an opening, if I didn't take it he'd be waiting a few months, and as my belly was growing with baby #3 I didn't want to wait.  So I went to battle with my insurance.  They wanted me to drive one hour each way, once a week, for 6 weeks to the Naval hospital for casting.  I wanted all of our care at CHKD, minutes from our home.  Lots of tears, stress, and requests for prayers and God came through again, ON THE DAY OF THE APPOINTMENT!
Week 1 of casting, he was walking on his toes all week, how could this help?  
Week 2 of casting, still on those toes!  But we saw some great progress week 1 even on the toes so we put our faith in the professionals.  (He cannot walk for 1 hour after casting as he allows them to dry properly.)
Week 3 Luke was up to +10 range!  Enough to cast for AFOs!  And he picked some crazy Black & Glow in the Dark White Casts for the Pirate Festival that weekend!  

I'll keep you updated on his progress!  Thanks for reading!


3 comments:

  1. Hi Jen,

    CHKD recommended my ladybug for serial casting after an appointment for a new AFO; she was measured at -10. She is older, but I'm still nervous about the experience. We are on the wait list, so I'm hoping you can give me a little bit of insight about the care during casts and what your son's walking is like now? Thanks so much for this post!

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  2. Hi there! My little guy was finishing up kindergarten when we started the casting, he wore his last set to graduation. He's not in second grade and we have moved away from chkd. Befoe the move, after casting was complete, we remained in pt. He got new 'braces' but they were never a perfect fit either. He graduated pt a week before we moved but the kept him an extra week because they could. Toe walking is natural for him though so even when he could physically walk flat, he wouldn't. Lots of reminders happened. Sadly, He's been walking high on his toes for months now. His heel cords just cannot keep up with his growth. We were just discussing the issue today actually.
    Things to expect when casting. .. expect to put a mattress on the floor in the middle of the room. Otherwise sleeping results in kicking walls. Stock up on Tylenol. The amount of muscle loss and pain after casting is real. Expect to be carrying your little one for a week on and off. Baths are fun! They give you some cool plastic covers that will tear your hands up trying to put them on, but they work. Expect everyone to seriously ask you, "how did he break both legs" um... duh!
    I hope I answered some questions, please let me know if you have more!

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    1. Sorry, I typed that from my phone quick, what a mess!
      He is now* in 2nd grade. And I swear I can spell before. Haha

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