Today was a big day in our world. Charlie received her ankle foot orthotics (AFO). Things did not go as smoothly as I had hoped but we made the best of it.
After a lovely drive through the mountains, we arrived at the appointment a few minutes early. Charlie used the extra time for play in the large play area at the clinic. Once again, Charlie sat on the floor and watched the other toddlers walk circles around her. I thought, “You won’t be grounded for much longer.”
After a short while, Charlie was called back for her fitting. She sat on my lap while the AFOs were fitted. During the casting a few weeks ago, she picked out a pattern with puppies playing baseball. I presume it was for the puppies. When the AFOs came out of the box, they had soccer balls, baseballs, and basketballs. No puppies. I don’t think she noticed. However, it did ruin my plans to distract her during the fitting by barking with her. She cried and sang a sad song while they were put on her. I consoled her with the promise of new shoes.
The man from the clinic’s orthotics department (he is pretty great) provided instructions for breaking in the orthotics. Charlie is to wear her AFOs several times today for one hour at a time, several times tomorrow for two hours at at time, and continue to increase by an hour each day. We were also given many helpful suggestions for footwear.
We left to buy Charlie’s first pair of shoes immediately after the fitting was over.
At the shoe store, a shoe employee helped me find the suggested shoes to fit over the braces. Charlie sat silently as we tried one pair after another. They were bland, clunky, and boys’ shoes. She refused to look at them. Instead, her eyes were fixated on a few sparkly pairs. She smiled and laughed when I handed them to her. Charlie had picked out what she wanted.
Despite my best efforts, I was unable to get the black sparkly shoes to fit over the braces. Defeated, I returned to the bland shoes. Charlie cried when the sparkly shoes were returned to the shelf.
I felt bad and wanted to cry as well. I wanted to yell, “Buying my baby’s first pair of shoes was not supposed to be like this!” After taking a moment to breathe, I decided that I was going to make the black sparkly pair work. She was so good about the AFOs. At least, she could get the shoes she wanted. I asked for a pair of scissors and went to work. I pulled out the insoles and modified other aspects of the shoes. Thankfully, after all that, they fit and Charlie was delighted.
At home, she tried wearing the AFOs and shoes for a second one hour period. She stood independently for the first time. Unfortunately, she is afraid to let go due to all the failed past attempts. Despite her apprehension, she moves nicely as she cruises. It won’t be long until she takes her first steps. I think it will happen once she becomes more confident and gets used to the new movement. It may even be a matter of days.
November 6th, 2013 at 9:08 PM
Yay, Charlie!
Can I ask what made you realize that you needed AFOs? My daughter is a former 25-weeker, now 14 months/10.5 corrected, and she is not even crawling, much less standing or walking. No one seems terribly concerned yet and she is being seen by a physical therapist, but I wonder when and who I should ask about AFOs in case they would help.
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November 6th, 2013 at 9:19 PM
Charlie sees a developmental pediatrician and he prescribed them. She has hypertonia in her feet and ankles.
They were first suggested by one of her therapists. Her regular pediatrician agreed with the suggestion. Ultimately, the final say was left up to the developmental pediatrician.
Good luck to you.
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November 6th, 2013 at 9:11 PM
It’s so good that you take the time to write this out, because you’ll be chasing her as she runs away and this will feel so far away before you know it. It’s also so good to remind those of us who can hardly remember their own braces and therapies. And I can’t help but think that three years ago (before the two-wheeler, before he swam on his own, before the SMOs) that reading your blog would have been a comfort as I watched my preemies fight for each milestone. Thank you! (And I bet you could bedazzle the heck out of any shoe that fit using super tacky glue, rhinestones or glitter from a craft store, or if you’re worried about choking hazards, glitter gel and a metallic paint pen would do just fine. I’m from New Jersey and we bedazzle there!)
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November 6th, 2013 at 9:20 PM
I needed a Jersey girl with me there today! 🙂
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November 7th, 2013 at 3:34 PM
Made me tear up that she couldn’t get the sparkly shoes she wanted. Soon, Charlie, soon!!!
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November 7th, 2013 at 3:37 PM
But she did! I made them work for her. 🙂
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November 18th, 2013 at 9:44 AM
Yay!!!!
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November 8th, 2013 at 6:51 PM
Go Charlie!!!
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November 9th, 2013 at 10:56 AM
My non preemie child who has CP had an AFO so our modifications were all one shoe only and so we often got 2 sizes either at Nordstroms who will break up 2 pairs without batting an eye or bought two pair of cheap shoes. Shriners hospital also outfitted us with shoes that fit over AFOs called Walk-something and of regular store brands Stride Rite seemed the best able to go over the brace without much modification and are also sturdy and cute (we had a few pink sparkle pairs).
And the best thing we ever did was to bounce bounce bounce even before she walked independently, on a mini trampoline at home and at a local bounce house place, which gave her a place to build strength, balance, fun, and a safe place to fall.
She will forget her fear of past attempts and take off soon, you are very right about that.
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February 2nd, 2014 at 4:20 AM
Hi, I had the same problem with my daughter. I then asked the hospital for Pedro boots they worked brilliantly and we got some fabric sparkles and glued them all on . Now she loves them and friends like them to. X
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February 9th, 2014 at 5:09 PM
Brilliant! We are getting a new set soon. I will keep this in mind. Thanks!
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