So, Jax has had his new TLSO and HKAFOs for a couple of months now. He was fitted for them in November and we picked them up the week before Christmas. I figured I'd take a moment to reminisce and share how both the fitting and delivery went and also fill you all in on the adjustment appointment and provide an update on how things have been going with them both.
I've done snippets of info and pictures here and there on Facebook, but wanted to do a comprehensive post for my sanity (and memory!). Because if I don't chronicle it somewhere, I'm never going to remember. :) C'mon, you all know what I'm talking about. I can barely remember my grocery list. :P
Our appointment for the fitting lasted a couple of hours. The Orthotist started with the HKAFOs. He measured Jax's legs and then did casting on both legs. Jax was okay with it right up until the 2nd leg and then he'd had about enough. I, of course, was tons of help - not! Hey, someone has to take pictures. Nana helped keep Jax occupied and we found that Jax was a huge fan of the Orthotist's tape measure.
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| "And just what do you think you're gonna do with that, mister?" |
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| Getting the first leg casted |
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| Thank goodness for tape measures! |
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| "Cheese!" |
The TLSO fitting was a whole other story. By then, we'd been there in the exam room for at least an hour. It was getting warm, it was near nap time, food time, get-the-heck-outta-Dodge time. I thought the new TLSO would be similar to the old one. The last time, it was made by just using measurements. This time, though, it was made via a cast. That's right, people, we had to cast his whole upper torso. I laugh now, because it took four people to cast one little toddler, but man were we all essential. Because Jax is unable to stand, one person had to hold him up in a standing position, while another held him up by his torso, while another person held his hands to makes sure he didn't touch the sticky mess and then the Orthotist actually did the casting. Not a whole lot of pics taken at that point because I was in the trenches doing the work.
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| Casting for the TLSO. Not fun! |
It took about a month for the HKAFOs and the TLSO to come in. We went to pick them up a few days before Christmas. Talk about an awesome Christmas present, right? That appointment was a lengthy one as well. Mostly because Jax needed to try them both on and then then the Orthotist needed to make adjustments. That, and we needed time for photo ops of the momentous occasion. It's not every day that your kiddo can stand on his own. ;)
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| Happy Jax with his football |
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| Jax and Daddy |
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| Very first time in his HKAFOs!! |
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| Big, Tall Boy! <3 |
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| Getting bored waiting for adjustments (and hungry too - had to resort to eating Jax's cheerios!) |
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| Thank goodness for free wi-fi this time around! |
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| Just chillin' in his new TLSO |
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| Lightning McQueen and Mater were also very helpful in keeping Jax occupied |
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| Watching Doc McStuffins |
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| Peek A Boo! |
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| Little Rock Star |
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| "Look Mom! I'm standing AND I got Papa's pens!" |
It's been a few months since we've picked them up and so far, so good. We went back a month later for a follow-up with Dr. Sanders and he wanted some adjustments made to the TLSO because it wasn't providing enough correction for the scoliosis. We also had the orthotist add a strap to the HKAFOs at the foot so Jackson's feet wouldn't pop up like they usually do.
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| In the waiting room at Dr. Sanders' office |
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| Our big boy didn't cry during his x-ray. That's a first for him. So proud! |
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| Unfortunately his curve is getting worse. The pic on the left is with the new TLSO (before adjustments were made). The pic on the right is from November with the old TLSO. Jax will continue to wear the TLSO and we'll follow up in May to see how he's doing. |
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| Killing time by playing his Bubble Guppies game on his LeapPad |
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| "I can play with the drawers while watching myself in the mirror? Awesome!!" |
The TLSO took a little getting used to but Jackson doesn't mind this one at all especially compared to the first one he had. Because this one was custom-made via casting, it fits a lot better and isn't as bulky. He's able to sit up on his own with this one and provides for more flexibility. He's wearing this one a lot more than the first one. I'd say we're at about 3/4 of the 23/7 rule which I think is a vast improvement. There are some days where he takes more breaks and doesn't wear it as much while other days he'll have it on the whole day with only a couple small breaks. I still haven't mastered the art of diaper-changing while he's got the brace on, but I'm getting there. ;)
The HKAFOs are going well too. Right now the focus is on getting him to be more confident while standing in them. At some point in the future, we'll work towards actually getting him to walk with them, but that's still a ways away. He wears these a couple times a day for an hour or so each time.
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| Bowling while standing in his HKAFOs |
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| Practicing standing while using a walker |
Peace out.
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