Mother's Little Helper

Warning: This Post Has a Mind of Its Own

Greetings from Oklahoma City (or as Carter calls it, 'Opanoma City')!  On Tuesday, we started the Pediatric Lokomat therapy I told you about in my last post.  We had another session last night, will have a third this evening, and one more tomorrow morning.  We'll have four sessions per week for the next month to month and half.  OKC is about 2 hours away from Claremore (our hometown), so that makes for a great deal of driving, as you might imagine. 

I think we've worked out a decent schedule, though, in which Carter won't have to miss any school.  On Tuesdays, we'll make a round-trip right after school.  On Thursdays, we'll leave school, have an OT appointment in Tulsa, then head down to OKC, where we'll stay until after his Saturday morning session. (Carter's pre-K program is Monday-Thursday.)  Fortunately, my husband and father-in-law have an apartment in OKC that Sean uses when the legislature is in session, and that Mike (FIL) uses when his law practice has him OKC (which is often), so that will be our home-away-from-home these next few weeks.  It definitely beats the heck out of the various Residence Inns we've lodged at during our other therapeutic adventures.

(By the way, I know this is primarily a 'crafty' blog, but over the years, several moms with special needs kiddos have contacted me after reading something I wrote about Carter.  Because I found out about the PL by blog-hopping, I feel compelled to share our experience with the PL here in case another family could benefit.  I hope you crafty readers will bear with me. :) )

I have to confess I've been discouraged lately where Carter's walking is concerned.  He was doing great until December/the holidays, but since then, he's seemed to lose interest in it and will only take a couple of steps here or there before collapsing.  A bunch of variables have contributed to this (our physical therapist went on maternity leave, which cut his therapy down by 2/3rds; school let out for the holidays so he fell out of his routine; we went to Jamaica for a week and our accommodations weren't very 'Carter friendly'; and I think he's been going through a growth spurt), but the end result is just such a bummer.  We've worked so long and so hard to make that progress; it's sort of shattering to feel like it's slipping away.  I try to tell myself that this often the nature of most progress -- two steps forward, one step back -- and that Carter has always done everything in his own time.  But still, now that I know he can walk, it's really frustrating that he won't.    

So, the stakes feel kind of high with this particular therapy.  After the first session, he was walking (holding the therapist's hand), and his right leg looked so much straighter than it ever has.  (His right leg has always been our nemesis -- it turns in at the knee much of the time, and he has a tendency to drag the toe of that foot.  The right toe of his sneakers always shows more wear-and-tear than the left.)  And that was after just one session, so that's pretty cool.  Last night he walked even longer with 'the robot' -- 30 minutes or so; when you think about it, that's a long time for a 5 year old to walk on a treadmill! 

I think that's what I need to keep reminding myself: he's only 5.  He works really hard, and he tolerates so much more than any other kid I know.  He's doing his part, and I'm doing my part by making available everything I can find that might help him.  Shoot -- I even canceled my CHA trip when I learned last week that we could start this therapy.

(In fact, I was scheduled to be in the air on my way to Anaheim as I type this.  Note to Kim, Cammie, Alma & Deb -- you are NOT to have TOO much fun without me!  A little is acceptable, but nothing obscene.  And you are required to toast me at every meal in which adult beverages are served. Knowing you, that's breakfast, lunch, dinner, and Taco Bell's Fourth Meal... ). 

Anyway, I guess I'm trying to pep-talk myself into being more patient and trusting, and less Veruca Salt-ish about this whole walking thing.  I mean, sooner or later, if he can walk, he will, right?  Right.  I just need to tell that little part of me that screams "I want it now!" to cool it.  There's no Golden Ticket where CP -- or anything else, for that matter -- is concerned.  All Good Eggs know that...

I started this post with the intention of showing you a couple of presents I made for two dear friends for Christmas.  But that was before I got so Chatty-Cathy on you.  Who knew I needed get so much off my chest?!  Rather than create the longest post in the history of blogging, I'll save the project sharing for another post.  Thanks for hearing/reading me out.   Next time, I promise more crafty/less angst-y, okay?

Keep Your Fingers Crossed

Today is an exciting -- and kind of scary -- day at the Burragio because today, Carter begins Pediatric Lokomat therapy.  A Pediatric Lokomat (PL) is a robotic gait trainer.  (Gait training, for you civilians, is a technical term for 'training/helping a person to walk safely and efficiently.')  This is what the PL looks like:

I first learned of the PL this past spring, and had Rachel (our dearly beloved friend, physical therapist, and mommy to Baby Abigail) gather info about it.  After getting information from the company, wading through research, and talking with other PTs who use the PL in their clinics, we became convinced that the PL was just what Carter needed. 

The protocol for kids with cerebral palsy is to do an hour of PL therapy a day, 3-5 times a week for 4-6 weeks.  I was in the process of making arrangements to stay just south of Nashville for 4-6 weeks this past fall in order for Carter to have access to a PL.  (As you can imagine, these are very expensive pieces of equipment, and at that time there were less than a dozen in the U.S.)  Then Rachel learned from her contacts with the manufacturer that University of Oklahoma College of Allied Health had an adult Lokomat and was in the process of fundraising for the pediatric attachment.  Woo-hoo!  This was great news: if OU could acquire the PL sooner than later, it would save us from having to leave home for such a long time!  Fortunately, my husband and I have a great friend who heads a medical trust, and thanks to his help, the necessary funds became available for OU to purchase the PL.  (The last time I checked, this purchase makes OU's PL the only one west of the Mississippi -- we Okies are cutting-edge!  Pardon the bragging as we don't get to say that sort of thing very often...)

There are a lot of benefits to working with a robotic gait trainer, including precision and elimination of physical strain on the PT.  We have a pediatric LiteGait system here at home (see photo to the right), and believe me, it is extremely tiring on the adult to guide those little legs in a proper gait; after a couple of minutes your biceps, shoulders, back and neck are on fire. 

But if you want to see what got me really excited about the possibility of using the PL, check these videos out.  

Here's a little girl walking just prior to beginning PL training:

And here is the same girl, about six weeks later, after PL training:

As you can see, the results are pretty dramatic.  We're very hopeful about what this training could do to help Carter become a full-time walker and have a more fluid gait. 

So why am I scared?  Well, I've learned there's no magic bullet where CP is concerned, and yet... the improvement seen in the above videos seems pretty magical to me. Carter is taking steps independently now, but the balance and coordination required is still difficult for him, and left to his own devices, he'd much rather crawl.  The idea of seeing Carter up on his feet, walking around all of the time?  It takes my breath away.  Thus, I'm trying to temper my expectations.

But still...  Just think!

Any prayers, good vibes, or messages to the Universe you have a spare moment to send on my little guy's behalf would be greatly, greatly appreciated.  I'll keep you posted!

Just so you know...

I actually have a lot of real stuff to share with you guys: a few gifts I made for Christmas, results of my extreme home makeover, etc.  But I don't even know where to begin...  I'm going to think about it. 

Meanwhile, ponder the terrible injustice that NBC and the Chin have leveled on the American people.  I know, I know... in the greater scheme of world tragedies, it's small potatoes, but still!  I can simultaneously care about matters of global consequence and entertainment, can't I?  Or has Jay Leno stolen that from me, too? 

Forever!