Usually I post things in chronological order (because I'm OCD like that), but I've decided to go against the grain and share with you what happened at Jackson's ortho appointment a couple weeks ago.
It was a busy, busy day. Originally we were supposed to have 3 appointments in Rochester, but Neuro had to cancel due to a last minute surgery. So that left us with Ortho and Fonte (Jax's equipment provider) and a big gap in between!
Ortho was bright and early this morning - a 6 month follow-up for Jax's scoliosis. He is supposed to be wearing his TLSO 23 hours a day. Ha! Good luck with that. We've attempted but are no where near that goal. The Ortho reiterated the importance of wearing the brace and we are going to try to be better about it. We had been having him wear it at night so he was getting a solid 8 -10 hours in it, but he's been battling a cold for a little while and the brace made coughing/breathing a little uncomfortable. But, he needs to be in it more. The brace is what is helping to prevent the curvature in his spine to get any worse. The worse it gets, the more likely it will be that he will need surgery to help correct/stabilize it. And nobody wants that! Surgery is the pits. :(
Hopefully when he gets his new one, it will be a little more comfortable and he can adjust quickly to being in it more. Oh wait, I jumped the gun didn't I? Dr. Sanders (Ortho) believes that he's outgrown this one and it's time for a new one. He actually got fitted for it yesterday and we're picking it up on December 19th (more about that later). We learned that with his brace on his curvature was measuring at 24 degrees, which is higher than what it was 6 months ago, further proving that he not only needed to wear it more, but also showed that the current one was correcting as well as it had been.
We also learned a little more about what Dr. Sanders believes Jackson's functional levels to be. His actual level of Spina Bifida is L5. That is where the lesion was. However, he functions at a different level (and different on both sides of his body too). It is believed that Jackson's left side functions at an L4-L5 level and his right side functions at an L-3-L4 level. Confused? That's okay, it happens. Basically, the lower extremities/muscles in his lower body are functioning a tad higher than his left side. He has more strength/function in his quads and hip adductors on that side, among other stuff.
Still confused? Seriously, it's okay. I don't blame you. If I wasn't directly involved here, I'd probably be stumped too. But, I found a really cool blog post over at I Want to Learn About Spina Bifida that explains the difference between actual vs. functional levels and provides some great visuals to put it all together.
Let's see, what else was discussed? Hmmm, nothing special or exciting....
JUST KIDDING!!!! Dr. Sanders said it's time to get this kid up and moving. So that means - NEW LEG BRACES!!!!!!!!!!!!!
Why am I so excited? The new braces are called HKAFOs. That's a whole lot more letters than his current AFOs. Let's examine this a little more. HKAFOs are Hip-Knee-Ankle-Foot Orthotics. When worn, these bad boys will help stabilize Jackson not only at the hip and pelvis, but as his knees as well and will aid in standing and walking. That's right, people - STANDING AND WALKING! Woo hoo! We're so excited. It will still take a lot of therapy and work to get Jackson in a standing position and then walking, but this is a sign of progress and we're so thankful for it! He got fitted for these as well yesterday (more about that experience later).
Here's an example of what the HKAFOs will look like. They will be jointed at the knees. The only real difference between the ones here and Jackson's will be that the hip part will be a leather strap. If it turns out that Jackson needs more support at the hip, there is the possibility of upcycling his old TLSO and fitting it as the hip section. But we'll know more after we pick them up.
The design will be different too. I'll unveil that later with the details on his fitting appointment. That, and I haven't showed Jason yet. If he doesn't know yet, neither can you all. ;)
We had some time to kill in between our Ortho appointment and our appointment at Fonte, so Jason, Jackson and I walked around the mall for a little bit. Jackson's favorite part was visiting the pet store and seeing the "meows" and "dogs". We also grabbed a bite to eat at Red Robin (yum!). Even after all of that, we had another hour and a half so we stopped at the Zoo. It's less than 5 minutes from Fonte's store and we have a membership, plus the weather was great that day. As it turns out, it was an EXCELLENT day to visit the Zoo. Not hot, not crowded and the animals were all out! With the exception of about 10 other people that we saw, we had the place to ourselves. Loved that! Here are a few pics from our visit to the zoo:
By the time we got to Fonte, Jax was tired and well past ready for a nap, so he was a tad cranky. But, he did great during his equipment adjustments. He needed to get the knee braces in his stander moved up because they were no longer in the right spot. He'd grown so much that they were digging into his upper legs rather than cradling his knees. They also moved his the back portion of his wheelchair back a couple of inches so he can sit further back in his chair and access more of the wheels when he pushes.
Despite being a little crankpot, he had a good time going in the back and saying hello to all of the wonderful staff at Fonte. He even decided it was a good idea to barge in on the big wigs during a meeting. Just pushed the door open and said hi! I think they welcomed the interruption though, lol.
So, our day was busy busy but very productive and a little fun too! Can't wait for the new braces to come in. I'm pretty sure I'm more excited for them than Jax will be when he gets them. ;)
'Til next time,
Hopefully when he gets his new one, it will be a little more comfortable and he can adjust quickly to being in it more. Oh wait, I jumped the gun didn't I? Dr. Sanders (Ortho) believes that he's outgrown this one and it's time for a new one. He actually got fitted for it yesterday and we're picking it up on December 19th (more about that later). We learned that with his brace on his curvature was measuring at 24 degrees, which is higher than what it was 6 months ago, further proving that he not only needed to wear it more, but also showed that the current one was correcting as well as it had been.
We also learned a little more about what Dr. Sanders believes Jackson's functional levels to be. His actual level of Spina Bifida is L5. That is where the lesion was. However, he functions at a different level (and different on both sides of his body too). It is believed that Jackson's left side functions at an L4-L5 level and his right side functions at an L-3-L4 level. Confused? That's okay, it happens. Basically, the lower extremities/muscles in his lower body are functioning a tad higher than his left side. He has more strength/function in his quads and hip adductors on that side, among other stuff.
Still confused? Seriously, it's okay. I don't blame you. If I wasn't directly involved here, I'd probably be stumped too. But, I found a really cool blog post over at I Want to Learn About Spina Bifida that explains the difference between actual vs. functional levels and provides some great visuals to put it all together.
Let's see, what else was discussed? Hmmm, nothing special or exciting....
JUST KIDDING!!!! Dr. Sanders said it's time to get this kid up and moving. So that means - NEW LEG BRACES!!!!!!!!!!!!!
Why am I so excited? The new braces are called HKAFOs. That's a whole lot more letters than his current AFOs. Let's examine this a little more. HKAFOs are Hip-Knee-Ankle-Foot Orthotics. When worn, these bad boys will help stabilize Jackson not only at the hip and pelvis, but as his knees as well and will aid in standing and walking. That's right, people - STANDING AND WALKING! Woo hoo! We're so excited. It will still take a lot of therapy and work to get Jackson in a standing position and then walking, but this is a sign of progress and we're so thankful for it! He got fitted for these as well yesterday (more about that experience later).
Here's an example of what the HKAFOs will look like. They will be jointed at the knees. The only real difference between the ones here and Jackson's will be that the hip part will be a leather strap. If it turns out that Jackson needs more support at the hip, there is the possibility of upcycling his old TLSO and fitting it as the hip section. But we'll know more after we pick them up.
The design will be different too. I'll unveil that later with the details on his fitting appointment. That, and I haven't showed Jason yet. If he doesn't know yet, neither can you all. ;)
We had some time to kill in between our Ortho appointment and our appointment at Fonte, so Jason, Jackson and I walked around the mall for a little bit. Jackson's favorite part was visiting the pet store and seeing the "meows" and "dogs". We also grabbed a bite to eat at Red Robin (yum!). Even after all of that, we had another hour and a half so we stopped at the Zoo. It's less than 5 minutes from Fonte's store and we have a membership, plus the weather was great that day. As it turns out, it was an EXCELLENT day to visit the Zoo. Not hot, not crowded and the animals were all out! With the exception of about 10 other people that we saw, we had the place to ourselves. Loved that! Here are a few pics from our visit to the zoo:
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| I had two seconds to snap the pic. He was ready to go look at more animals! |
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| Jax and Mommy |
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| His favorite part of the zoo - the bus had a ramp to fly down. He was having a blast. A future wheelchair BMX champ, maybe? |
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| It was even fun to run into Daddy! |
By the time we got to Fonte, Jax was tired and well past ready for a nap, so he was a tad cranky. But, he did great during his equipment adjustments. He needed to get the knee braces in his stander moved up because they were no longer in the right spot. He'd grown so much that they were digging into his upper legs rather than cradling his knees. They also moved his the back portion of his wheelchair back a couple of inches so he can sit further back in his chair and access more of the wheels when he pushes.
Despite being a little crankpot, he had a good time going in the back and saying hello to all of the wonderful staff at Fonte. He even decided it was a good idea to barge in on the big wigs during a meeting. Just pushed the door open and said hi! I think they welcomed the interruption though, lol.
So, our day was busy busy but very productive and a little fun too! Can't wait for the new braces to come in. I'm pretty sure I'm more excited for them than Jax will be when he gets them. ;)
'Til next time,
sooo cool. Alex and Jackson can be HKAFO's brothers. :) Seriously, Alex LOVES being upright and walking in his. Besides the wheels, its the best thing we've done. oh and I don't envy Jackson on the scoliosis brace, that stinks. they sure don't look comfortable but hopefully it does what it needs to do and I"m sure Jackson will rock it no matter what. See you soon!!!