Wednesday, October 1, 2014

Children's Hospital and world cp day

Callie had an appointment to get her new AFOs and shoe modifications...something she is likely to need to do more often for awhile as we work on getting this new prescription and the theoretical ideas we are getting these based on figured out.
 
When Callie went to the hospital for her dental surgery, we saw this cat, who we got to see again!
 
His name is Sam.
 
 
Callie called him like a dog, and he came running!

 
This cat is so friendly!

 
He even has a tag on him that said, "Hi, my name is Sam.  I am very friendly.  If found at Children's hospital, I know my way home.  I just like to visit."

 
If we were to ever have a cat, THIS is the kind I would want, lol!  He really is super friendly!

 
Callie seeing her new shoes for the first time...YIKES, check out that platform!

 
Callie had fun playing in the exam room while they were modifying her shoes.  She was pretending to ride on this sea turtle, and walk on water, lol!

 
The theory behind her new set up...
 
One goal is to get her hips level.  Callie has a leg length discrepancy, which makes it hard for her to walk.  She has about 1/2 inch between one foot and the other (if you notice her shoes above, they are very different heights)!

 
Another goal is to get it to where she is CAPABLE of standing square/straight.  So they are putting a wedge under her at the angle that forces her to straighten her knees...right now, that is a pretty big angle.  The hope is that we will be able to decrease it as time goes on!
 
We are working with several years of muscle memory to make her stand in a very different way!

 
THIS is what we want to see!  Standing big and tall, knees straight, body square!

 
And that is just her shoes.  The AFOs, themselves have also been put on an angle tipping her foot to the outside to counter the pronation that Callie has in her feet.  The hope is that she will begin to walk on the outside part of her foot, rather than collapsing through her arch. 
 
Therapy for her this week is to stand.  Once we feel like she is solid with standing, we will move to walking with her walker.  She is not going to like it, but we really want to elongate her gait, get her to have a good heal strike with each step, and stand up big and tall as she walks.  If she will do this, it will stack her skeletal structure, as God intended, and she will put less wear and tear on her body AND use less energy to get around.
 
(If you want to see how much energy Callie uses while walking, try this...stand up, rotate from the hip, the right leg until the toes are pointing at your left foot.  Now stand up on your toes.  Next bend your knees.  Finally lean forward.  She uses about 8x more energy walking this way that the rest of us doing walking normally - if we can get her to stack her bones so that her skeleton is holding her up, rather than her muscles, it will be much better for her!)
 
As I said, this is very experimental right now.  It is an attempt to help her walk better, and preserve her body for the long haul, not just have her walk anyway she can, which has shown to break down the body in childhood.
 
Those who walk like Callie, with a typical crouched cp gait in childhood, tend to break their bodies down so much that they are in a wheelchair by the time they are in their TWENTIES.  (Something like 90% of the time.)
 
The stats are heartbreaking to me.  I wish I could take this for her.  But I can't.  What I CAN do is seek out new treatments and therapies, get her involved in studies, keep going with neurodevelopmental therapy, and pray.  God knows exactly what she needs!
 


Today is World CP day.  We have watched for almost 7 years (her birthday is in 2 weeks) as this disorder has taken its toll on Callie.  We have seen the pain, frustration, difficulty, and difficulties it has caused.  We have also seen God work in mighty ways!  We have seen the joy of working for so long and so hard to do something the rest of us take for granted, and the utter sweetness in finally being able to do that small thing.  We have been challenged, humbled, and have learned many lessons from Miss Callie.
 
Today, on world CP day, please take the time to pray for those effected by this disorder, pray for their families, and their friends.

3 comments:

  1. WOW!!! Those are drastic angles. Praying for them to do the job though. She is such a trooper, with such a sweet spirit. We miss that little lady terribly (as well, as the rest of you all:) I just came across some of her new born photos the other day. I can't believe that was almost 7 years ago.

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  2. I'm so happy you continue to share her updates. God is doing mighty things with that little girl. She is always on my prayer list, I can't believe it's been 7 years!

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  3. It really is hard to believe that she will be 7 in just 7 days!

    She is doing very well. While she has had several setbacks in the last year, she is still doing very well, and is far beyond what the doctors thought she could attain in her lifetime!

    Thanks for praying!

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