Thursday, September 13, 2012

What a difference botox makes!

 Gideon's cerebral palsy primarily affects his feet and legs.  Here were Gideon's feet before any treatment.  He walked completely on his toes, could not flatten his feet down to put his heels on the floor, and understandably, had a lot of difficulty balancing.  He had to hang on to walls or furniture to make his way around the house.  We've been doing physical therapy and stretches for months now, but those calves were still very tight.
 You can see him losing his balance here.  He did such a great job of getting around, but balancing on his toes made it very challenging for him to maintain his balance:
 It has also caused some damage to his toes, which we are going to try to correct with non-surgical methods over the next few months.

We took Gideon to see a physiatrist, who recommended botox injections into Gideon's calves.  The botox works to loosen and relax the muscles, allowing a stretch that was previously impossible.  Some kids have the (very painful) botox injections done while they are awake, but because of Gideon's hyperactivity, impulsivity, anxiety, and limited self-control, we all decided it was necessary to sedate him for this procedure.  (And since he was sedated, it was a perfect time to get his MRI done, as well.)  The botox provides temporary results.  We will most likely be repeating this procedure every three to six months.

The results were not immediate.  It takes 24 to 48 hours to see any change.  So when Gideon awoke after the procedure I took him home and waited to see what would happen.  And sure enough, within two days, I was able to gently stretch Gideon's darling little feet into a fully flat position!  It is truly remarkable!  So once he was experiencing his new range of motion, we got him fitted for AFOs (Ankle Foot Orthotics) and then we got to go shoe shopping to find shoes big enough to fit over the bulk of the AFOs, with velcro long enough to fasten around them, and also stiff and sturdy enough to keep the boy off his toes.  

We discovered that even with the AFOs on, he still wants to walk on tiptoe, and the light-weight shoes allowed him to do so.  But we discovered that these heavier, clunkier shoes keep his heels flat on the floor.  And his walking is just beautiful!  He is balancing, his gait is much more even, and he can walk and walk without falling down!  

I think what amazed him the most was that he can stop in the middle of a room, without holding on to anything, and balance!  He has never been able to stop walking without tumbling to the floor before!  

Yay for breakthroughs!  
Go, Gideon, go!


Jill said...

Hooray for Gideon!!! That's awesome!

Finding shoes to go over the AFOs is no easy task. Elijah has SMOs (not sure what the difference is) but he also needs shoes that tie as he would constantly undo the velcro. That makes it even more difficult. You may already know this, but you can just take the AFO with you shoe shopping instead of taking the child w/ you. Makes it a whole lot easier. And no, I didn't think of that on my own. :-)

Gideon is truly blessed to have you as his mama, as are all of your children.

Marilenne said...

Yay for Gideon!! That's some great walking!!

My little girl (age 8) with CP has just started botox treatments at the advise of her PT and we've already seen so much improvement with her gait! She absolutely *hates* her AFOs (glad to see Gideon's not as bothered by them) but oh my goodness that botox is such a breakthrough for kids with CP!!

You've got a remarkable (and adorable!!) son, Rachelle!

Marie said...

It's so cool to see him walking so well! I'm amazed to see how well you are all doing! Way to change the world with what you're doing with the kids :0)

Jed and Kimber said...

That is so great! I love seeing him in action. :)

Cyndi said...

our daughter who has CP has been getting botox for many years now. In order to make it work longer they have added Phenol. This allows for fewer trips to the OR. (sedation is needed to do Phenol). You will notice that he seems taller when wearing his AFOs. They can be a hassle, but in the long run worth it. Keep moving little guy, you are looking great!

Joanna said...

WOW! I can't believe the difference that made! Go Gideon, GO!

sonja c. said...

So fantastic to see this little guy up and going! He looks like such a sweetie pie! I loved and prayed for him before you committed to him. I love seeing him thrive in such a perfect home for him. God knew just where Gideon was ment to be. Blessings to you all. Sonja

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