Jackson had an appointment with his orthopaedic surgeon, Dr. Sanders. It was a follow-up to get a new set of spinal x-rays and monitor his neuromuscular scoliosis. <----What's that you ask? Well, let me do some explainin'!
Scoliosis is basically an abnormal side-to-side curvature of the spine in either an S- or C-shaped formation. Neuromuscular scoliosis just means that Jackson's scoliosis is caused by his underlying Spina Bifida.
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| Source: Boston Children's Hospital |
When Jackson saw Dr. Sanders in October, his x-ray showed a slight curvature which led Dr. Sanders to believe that scoliosis was present. However, we decided to monitor it and follow-up in a few months to make sure that it was still present (Jackson had moved on the x-ray table) and see if it had worsened at all. The new set of x-rays taken yesterday (which Jackson hated having done - cried the whole time even with me standing right there with him) confirmed the diagnosis of scoliosis and also showed that it is indeed getting worse. Not exactly what I wanted/expected to hear. Usually all of his specialist appointments lately have lasted less than 10 minutes and we get the "all good, see you in a few months". Not this time.
We were presented with two options - get him fitted for a spinal brace to help correct the curve or wait-and-see. Really, it's only one option because wait-and-see just isn't going to happen. The scoliosis isn't severe enough that it requires surgery at this point, but he definitely needs some support to get his spine balanced and the brace should accomplish that. Dr. Sanders also wants Jackson to go see his neurosurgeon Dr. Silberstein to make sure that the worsening scoliosis isn't a symptom of a shunt malfunction. Sometimes, it can be so he just wants to rule that out as well.
So, over to the Orthotics department we went. He was measured for the brace and we now have to wait three weeks before the custom-fit brace is ready. I'll be honest. I didn't really ask exactly what type of brace he will be getting but my best non-medical, googling professional guess is the TLSO (thoracolumbosacral orthosis). It's going to be made of foam with a plastic frame and is somewhat flexible. He'll be wearing it under his clothes as much as possible throughout the day. Here's an example of what one looks like:
And no, we aren't going with the pink camo. Remember that cool wrap design that I wanted to get for Jackson's AFOs but didn't? Well, he's getting it for his spinal brace! I really wanted to get something that would match his AFOs, because I'm OCD like that. But, of the options we were presented with I didn't really see anything that would. So, blue aqua it is. I'm pretty sure it looked something like this:
Getting this means that we have another go-around with insurance, Early Intervention, letters of justification, etc, etc, etc. I'm so over-joyed as I love that process so much.....not! But, I better get used to it because this is only the beginning I'm afraid. And what my baby needs, my baby is going to get....come hell or high water!
We should only have to wait three weeks for the brace to come in so it's not exactly the same as the wheelchair/stander process. We go back on the 24th to pick it up and then go back again two weeks after that to get another set of x-rays with the brace on to make sure it's doing its job. In the meantime, it's just paperwork to get it paid for by the appropriate parties involved.
I also want to mention that Jackson used his wheelchair today. He did a great job wheeling himself around and letting me take the controls when needed. He also really enjoyed wheeling up to the table in the waiting area and playing with the puzzles. He was more excited about that then the movie they were playing.
And if that wasn't enough to keep us busy, we decided to pop over to Jackson's eye doctor to get his glasses fixed. Specifically, the nose pads as one of them had broken. It was in the same complex just a few buildings over. It was only supposed to be a quick in and out. We didn't even bring the wheelchair. I carried the kiddo. New nose pads in and we were on our way. Back down the elevator, to the car and we were free for the rest of the day. Then the darn elevator had to stop in between floors and ruin everything!
That's right....we got trapped on the elevator as we were leaving the building. Jackson isn't a huge fan of elevators so as I was telling him we were almost done and just a couple of seconds to go, then there was an abrupt halt and it just stopped. The door didn't open, nothing. There were seven people total in the elevator including my Mom, Jackson and myself. Immediately, the other woman in the car wanted to hit the alarm button. I politely asked that we didn't right away as Jackson also has noise sensitivities and unless she wanted to deal with him freaking out and crying the whole time that we try another way to communicate with the "outside". So, another man called back to the doctor's office he had just left to let them know that they had some people trapped in the elevator. They in turn called building maintenance who then called elevator maintenance and we were told to sit tight. As if we had anywhere else to go. Hahahaha!
The whole "ordeal" lasted 30 minutes or so before the elevator maintenance person was able to arrive and slowly lower us down to the 1st floor. For the most part, everyone except that lady was able to maintain their composure (even Jackson) and just apply their patience skills to get through it. She insisted, even after we talked to the receptionist, that we hit the alarm button on the elevator. Luckily, it only sounds for as long as you hold the button. Phew! I was worried that it was going to go off until someone got us out of there. I pretty much would've just handed her Jackson and told her "You started it, you get him to stop!" if he had started crying. <---Okay, not really. But in my head I would've and she probably would've seen by my facial expression that I wanted to bitch-slap her. Because, of course, I didn't have any drinks/food/toys to help distract/calm him down. But that's okay because he didn't need it anyways. He's one awesome kid! He almost fell asleep. I think if she hadn't been telling her husband to call 911, or yelling out to the people in the lobby through the door, or complaining about how hot it was, or pressing every button on the elevator panel, he actually would've fallen asleep. It was around nap time anyways. I know that some people have anxiety issues and I appreciate that, but c'mon, you're only making it worse for yourself and the others you are around. The rest of us were joking around with each other the whole time. I mean, how often can you say you were stuck in an elevator?
Anywho, that's the majority of our day yesterday, in a long, rambling nutshell. Good times, huh?
Peace out. Lunch break is almost over and I've got to get back to work.
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