Now, where were we in this thing called "Another Smith Family Blog"? It has been forever and a day since I've posted anything. But, in my defense, we've been pretty busy these past couple of months with doctor's appointments, new preschool, new therapy, holidays, birthdays, work, life and a very special little boy's 2nd birthday!
According to my last post, we were waiting to go back and pick up Jackson's TLSO. Well, that appointment has come and gone and we even went back for a check-up to make sure it is providing enough curve correction. As a little recap, Jackson's ortho decided that it was time to treat Jackson's scoliosis with a TLSO (Thoracic Lumbar Sacral Orthosis - or spinal brace). Jackson's curve unbraced is 35 degrees, similar to the x-ray pictured to the right. This isn't Jackson's actual x-ray - I found this one on the good-ole interweb. I plan on getting copies of all of Jackson's radiology tests at some point, but just haven't gotten around to it yet.
Anywho, we went back at the end of April to pick up the TLSO. He was less than amused by it. He cried the first time it went on. He had fallen asleep in the car on the way up there, so he had just woken up before we went in. Combine that with being hungry, a little bored and having some random guy come at him with a contraption like that and I can totally see why he cried. I probably would've too. Oh wait, I kinda did. I swear, any time that kid cries, I tear up too. So annoying. :)
We went back a couple of weeks later and spent ALL morning at Dr. Sanders' office getting x-rays and TLSO adjustments. Jackson's first x-ray was to make sure that the TLSO was providing enough correction. Jackson HATES all things radiology - with the exception of ultrasound. I think it's because he's able to wiggle more during ultrasound than during an x-ray or CT. That, and I'm sure the weird noises and large equipment scares him. Nevertheless, he needed to have it done. Poor kiddo cried the whole time. And yup, I got teary-eyed too. It's hard to see him be so scared/upset about going through certain things and it gets to me. I know, toughen up Buttercup. I'm working on it. I try to distract myself with songs and such. But sometimes, I'm too busy trying to distract Jackson that I forget to sing "Baby Got Back" to myself. Hence, the tears start flowing. But enough about me.....
The first x-ray showed that the TLSO was only correcting the curve to 23 degrees. Totally unacceptable. So, across the hall and over to Orthotics we went to get the TLSO adjusted. The orthotist added some more padding on one side, thus allowing that part of his spine to get further pushed back towards center. After what seemed like a lifetime later, we were back over to Dr. Sanders office to get another x-ray. Oh joy! Another one. Went about as well as the first one did. Two crying babies. LOL. But now, the TLSO is correcting his spine to 13 degrees. Much better!
Overall, he should be wearing his TLSO 23 hours a day, only taking it off for bath time and if he gets too hot. We are nowhere near 23 hours a day but we are working on it. He needs to be wearing it more. The TLSO won't correct the curve but will prevent it from getting worse. If the curve gets any worse then he will need surgery to correct it and we don't want that. In all likelihood, he'll end up needing surgery at some point for it, but we'd like to prolong that as much as possible. I'm not ready for another surgery any time soon!
He's been wearing it some during the day and we've tried a few times overnight. The first few times he tried it overnight, he ended up waking up around midnight and having a coughing attack. We weren't sure if the TLSO was causing some respiratory issues or if he was still getting over his latest cold. But, we tried it again this week and he slept through the night with it on. Yay! During the day he's getting too hot, so it's not on for long stretches of time. Poor kid sweats like a pig when he's wearing it. We're trying to find a better alternative for something for him to wear underneath it. The body sock that the Orthotist gave us is too tight and causes major irritation under his armpits and the onesies he has been wearing are breathable enough. Someone suggested an Under Armour type material so I'm going to check that out. We've got to also be on the lookout for skin irritations as we don't want them to become open sores.
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| Waking up happy after sleeping through the night with his TLSO on :) |
On the plus side, I've noticed that Jax has gotten more used to the TLSO in the past couple of weeks and is adjusting how he sits, so I think it's only a matter of time before he remasters sitting up on his own. I think that the transitioning from laying down to sitting is going to take a lot longer though. But that's okay. He'll get there. He's adjusted very well to being in his wheelchair and stander with the TLSO on. We had to get each piece of equipment adjusted but once that was done, he was back to doing donuts on the deck and getting into every cupboard and drawer in the kitchen!
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| Intro to Fingerpainting - Less Mess and Sensory Issues |
There aren't a lot of picture of him wearing the TLSO that actually shows the TLSO itself. Mostly that's because we put a t-shirt on over it in an effort to keep the straps from getting dirty. I'm not sure who ordered that with white straps and foam - oh wait, that was me! Not sure what I was thinking there. Actually, I wasn't thinking at the time we ordered it. I guess I wasn't prepared for the fact that he would actually need to get a TLSO so I was completely caught off guard that day. But, it is what it is and this is what we ended up with. Hopefully we'll be able to keep it somewhat clean. ;) Here's one of the only pics I could find without a t-shirt over the TLSO
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