Tag Archives: brace

This Boot is Made for Walkin’

It’s been a few weeks now since Patrick got his brace, or as we call it, his “boot.” His therapist used this word the day she fitted him, and Patrick took to it. He sees me with his brace in hand and starts reaching and begging, “boo, boo, boo!”

It was hard getting used to the brace. For the first week, even an hour of wear had him grumpy, tired, and irritable. Daily stretches were the worst, as they worked the muscles that were already sore. I just kept pushing through knowing that things were supposed to get better with time.

The other awkward new adjustment was shoes. Patrick currently wears a size 5 1/2 .But, the brace measures a 7 1/2 in length, and when you allow for the bulky straps on the side, it takes an 8 to get over the brace. Obviously a size 8 shoe is too long for his foot and this difference made him seem a bit lopsided while he was getting used to it.

I really want to get over to Nordstrom, who have a “mismatched shoes” program and employees who are actually trained to help fit shoes, instead of just measure feet. Shopping for a spare shoe at Payless the day we picked up Patrick’s brace was frustrating and traumatic. I’ll forever pity the poor teenage associate tasked to wait on us.

But I digress.

Patrick has since made a wonderful adjustment to the brace. He even knows how to help me more easily get it on, if he’s not distracted with something else.

It helps. No longer does his little foot betray him at random, popping up or turning in and making him fall.  He doesn’t veer into the wall every 5th step while walking halls in therapy any more. (It takes more like 40 steps.)

He’s getting brave enough to walk more and more. He takes several steps between his daddy and me (or other adults he trusts.) He forgets sometimes that he doesn’t want me to see him stand, and lets go to play with a toy. I’ve even caught him walking along the edge of the couch without holding on – just reaching out and touching every few steps to assure he’s got his balance.

 

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There is still improvement to be made. At least once an hour his heel still pops up inside the brace – quite a feat, considering how much there is holding it down. Only then it gets stuck. I’ve learned that if he’s crying and begging for my help, it’s probably his foot.

His foot does still turn in a bit, too.. or I should say that his leg does from the hip.

We’re meeting with his rehabilitationalist today to talk about whether or not we need to take more action than just the brace.

But for now, my little munchkin is happily practicing walking. We walk everywhere. I’ve learned to allow extra time for such adventures. For example, we spent an hour picking up 3 items in the grocery store so that he could push the cart. We arrive, when possible, 15 minutes or more early to appointments so that he can hold my hand and walk inside. And we take walks around the yard and neighborhood.

These last take the most time because for the first time, Patrick can explore the things he’s been looking at for 2 years on his walks so we have to stop often to let him touch the fences and flowers and rocks along the way. I don’t mind. He’s earned it.

Walking . . . Well, almost

When I started Patrick in heavy duty physical therapy 3 months ago, he was crawling like a wounded soldier.. on his belly with one leg dragging. The goal we set then was for him to be able to stand and walk. Last week, it’s like the little lightbulb flicked on and he’s brave enough to be putting some serious effort into learning to walk.

It started when he found a toddler walker (the medical kind) in the physical therapy office. His therapist pulled it out so he could play with it. Before we knew it, he’d made a successful lap around the hallway in the clinic. When we got home, all he wanted to do was stand and walk around the furniture.

The next day, I weighed down his little cart from Ikea with 10 lbs of flour and away he went.. Walking the cart across the room with me holding onto him by his harness to keep him from falling. Before long, I decided the space was too small, so we went outside. He pushed his little Ikea cart with me holding onto him for balance all the way from my house to the school parking lot behind us.. We sat down and rested after a couple of laps in the parking lot. I thought he’d quit when he saw our house, but no.. he kept going 3 houses the other direction before sitting down to rest, then getting up and trying to take the cart back home. It was at least half an hour of walking and about half a block.

The next night, he saw his cart standing there again, climbed up and pushed it across the room all on his own. The first several tries he leaned too far into it and had to basically run to keep up, but with some practice, he was soon able to control his speed a bit.

He still has a ways to go. His little cart tends to veer to the left and Brian pointed out that he seemed not to be taking as good of steps with his right leg. He walks on his toe and kind of turns his foot inward to take a step.

I pointed this out to his physical therapist yesterday. We talked about some of the possible causes. (Effects of the cardiac arrest, sensory issues, or the scar tissue). I remembered kind of out of the blue being told that the deep wound caused by an IV infiltrating the vein in his ankle when he was a month old could cause problems with walking. (This kind of out-of-the-blue-but-makes-sense memory I sometimes think is the Lord pointing us in the right direction.) In the end, the therapist explained that knowing the cause doesn’t change the treatment.

She did some evaluation exercises and found that he has limited range of motion in the foot, leg and hip. Now I have exercises to do with him at least twice a day to help stretch the muscles. We hope that this will improve things, but if not, she may order a brace for him to wear while he’s learning to walk to help correct the position.

Knowing this as he first starts walking is a HUGE blessing! We can make a minor adjustment now that will help him down the road. This is exactly why I have him in so much therapy right now.. So that we catch these little things that are results of his illness while they’re easy to correct.

This was a good reminder to get this week as I added occupational and music therapy this week and am trying to decide if I proceed with a feeding therapist as well. As if I weren’t already busy. The occupational therapy has made a difference, though, after just one visit. See, we think Patrick might be “sensory seeking”. In other words, he craves big physical input. The therapist has taught me some techniques to use to fulfill that craving, leaving his brain and body free to focus on other things.. Like walking or looking at books or learning new ways to play with toys.

It’s a little thing, but I think I’ve seen improvements. He sat next to me on the bench in church on Sunday and just looked at a book for a good 15 minutes. This is remarkably unwiggly for him.

And so, we keep plugging along.. doing all we can to keep Patrick learning and growing now with every moment he feels well enough to do so. I’d really like him to be walking before his transplant. I think that if he’s not walking when he goes in, that it will take him a long time to get well and strong enough to get back to where he is now. So if we have to walk to the school and back every day to accomplish that goal, that’s what we’ll do. He doesn’t mind the walk, especially now that school’s out so he can walk to the playground and slide on the slide.