Our Day with the Ortho Peeps and an Elevator

Yesterday was a busy day!

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.

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.

Read More 0 Comments | Posted By Robin

"This is How I Roll!"

So, as I sit here in the quiet feverishly attempting to make my self-imposed deadline of having this post completed by today (it's 11:50pm!), I look back on the past 33 hours and realize just how much our lives have changed. Changed for the better. Our little man has finally gained some much needed independence - thanks to some new equipment.

We picked up Jackson's equipment yesterday, or Tuesday depending on when I actually publish this. The wheelchair is a....hold on, gotta go get the info! Cue boring, put-you-to-sleep hold music......and we're back. The wheelchair is a Zippie Zone and the mobile stander is a Rabbit R82. We met Linda from Fonte (the equipment company) along with Jackson's PT and our new Service Coordinator over at Korpiel Physical Therapy to do some final adjustments and take delivery of these awesome pieces of independence. Both Jason and I were there along with my parents too. <----Did you see where I mentioned a new Service Coordinator? She officially doesn't start until April 1st, but yup, we requested a new one. Long story short, it was way past time for a new one. Let's just say, our last one wasn't a good fit for our team and leave it at that (at least here on this public forum).

Anyhoo, back to the good stuff! With only some minor adjustments, Jackson was up and running. Or, rolling. However you want to see it! He did amazingly well with the in and out, adjust, back in, back out, let's-try-it-again process of adjusting the equipment to fit him. And all on a very, very short nap. What a good sport! I think he was excited too. :) We hung out for a little bit and let him try both pieces out and go out into the main room and visit with all the other patients that were there that day.

Afterwards, we headed back to our house to celebrate with a yummy spaghetti dinner. Jason's parents came over too! Jackson showed off his new equipment and started becoming familiar with the house at a whole new level of perspective. We already have a list of things that we need to toddler-proof.

I believe the goal is to get him in the stander at least twice a day for about an hour at a time. So far, that hasn't proved to be a problem. His Special Ed Therapist (SEIT) may have a problem with him getting to focus on his tasks when he's in the stander though. He LOVES the tray that's on the front of his stander. Why? Because, it opens and closes! He loves to open and close things. We did find a way to fairly easily remove the tray on the front if need be but hopefully the novelty of it will wear off soon. Or, at least long enough to read some books, do some puzzles and play ball with his SEIT.

The wheelchair will be used primarily outside of the home, or at least that's its intended purpose. We are still trying to build Jackson's leg muscles and prepare him for standing and eventually walking. So, we don't want him to be in the wheelchair all the time. We want him on the floor crawling around, building that core strength and getting up on all fours. But, when we're out and about, like for instance at The Strong or the Zoo, he would probably have more fun if he was in a wheelchair rather than in his stroller.

Okay, I know. Enough talking. Let's see some pics! I know how you all roll. <---Get it? LOL. I crack myself up. Even at midnight, I'm still hilarious and witty! Oh crap, missed that deadline. Technically, it's now Thursday. Oh well, you knew I wasn't going to get this done on time anyways! ;)

Tick tock....still waiting for the pictures to load. Maybe I should go brew some coffee. I may be here a while.

The wheelchair didn't need much adjustment. They just pulled the back cushion back a little bit and added a seat belt and he was off to the races! He wanted to get out and check things out! Linda said that this wheelchair was one of the smallest ones that she, or the company that built it, has ever made.

The stander took a little longer as there were more things to move, adjust, straighten, angle, etc. But, when he figured out that the tray opened and closed (which he did in like 2.5 seconds) he was all good with the wait.

Who needs to wheel around, when you can just stand there and open and close, and open and close, and open and close......

"Boom! Gotcha Dad! Good thing you have steel toe boots cuz you're gonna need them!"

"Hey Mom! Catch!"

Trying out the chair at home. He loves the natural slope of the kitchen floor, lol. He can cruise right along with little effort. Getting back up the "hill" is a little challenging though. His little arms will be buff in no time!

Toddler-proofing action item #1 - Find a new spot for this stuff! He had a blast pulling everything off the shelf and throwing it on the floor. I wish I had gotten a picture of his devilish grin. I'm sure I'll catch it again at some point.

Pause for dinner. Spaghetti - yum!

Time to try out the stander. Weeeeee!

In the stander today at Grandma and Grandpa King's house. He loves putting his snack in the tray!

Watching the birdies at the window while at Grandma and Boppy Smith's house tonight.

Read More 0 Comments | Posted By Robin

Let's Play! Our Day at The Strong

For Christmas, Jackson got a membership to The Strong (big thanks to both sets of grandparents for that!). Jason and I decided to take a day off during the week last month and had a little family day at The Strong. It was the first time that we had been there. We had just as much fun as Jackson did!

Check out some pictures from Jackson's first time at The Strong:

He thought the cab was cool until he realized he had backseat passengers. Once they started talking to him, he was all "Okay, get me outta here!"

Jax loves things that turn or spin.

Daddy and Jax

Sesame Street

Read More 0 Comments | Posted By Robin

Here's What's Happening in Jackson's World: The Bath Chair has Arrived!!

Finally! It's here. Okay, I take that back. We've had it for about a month. We've just been so busy enjoying it that I haven't posted about it until now. <----And if you believe that that's the true reason I haven't blogged about it yet, then I have some beautiful oceanfront property to sell you as well. ;)

We went with the Wenzelite Otter Bathing System. Why did we get Jackson a bath chair, you ask? Well, while he's vastly improved in terms of core strength in the past few months he's still lacking the ability/endurance to sit up completely on his own for long periods of time. Mix that with the buoyancy of water and bath time just isn't safe for him. He cannot be in the tub by himself without one of us holding him the whole time. And that's no fun! No independence whatsoever makes for a slightly cranky Jackson. We had been making due with an infant bath tub (smaller size, more support, able to play more by himself without needing to be braced by us) but even after upgrading to a larger model he's still a wee big for it.

Being strapped into the bath chair allows Jackson to be comfortable and safe in the bath tub. He can play on his own without fear of losing his balance and slipping down into the water. The seat is adjustable so when it's time to wash his hair we can lean him back and get-r-done. There are also mutiple strap positions so the chair will grow with him. It also helps save Mommy and Daddy's backs and makes it so much easier to actually bathe him when he's done playing! He doesn't mind being strapped in and totally loves that there is so much more water to splash in (cue Mommy and Daddy getting even more soaked than before!). He already loved bath time, but this makes it soooo much better. He would stay in there all night if we let him.

Read More 0 Comments | Posted By Robin

Here's What's Happening in Jackson's World: New AFOs

Jackson's been rocking his new AFOs for over a month now, but I thought you'd like to see what they looked like.

Okay, they're not really that much different than his old ones. ;) Same style, just bigger and with an additional toe strap. Here's what his old ones looked like.

When you look at them together though....

....man has he grown! I mean, we know he's bigger. Anyone that picks him up on a regular basis knows that he's grown (insert biceps of steel!). But it's amazing to see how much he has grown over the past year. He's growing up too fast in my opinion. *Sniffle* It kinda makes the ovaries twitch and gives me a little baby fever. Hehehehehe

We could've picked something different, but honestly I didn't really like any of the other strap options. He's not really into one specific thing like dinosaurs or whatever and most of the other straps were a lighter color that I thought would get dirtier faster.

I have since seen wraps which I think can be applied to the plastic part(?). This wasn't something that was offered and we didn't know about it when we ordered this last pair. But maybe next time we'll look into it. At this growth rate, he'll be needing a new pair soon anyways! Or maybe a different style (KAFO or something?). One can hope, right?

I'm liking this one, what do you think?

In other equipment news, he now has his bath chair. I'll have a separate post for that in the near future. As far as the wheelchair and stander go, paperwork has been submitted, both have been approved and ordered and now it's just a waiting game. Jason and I aren't exactly patient people (shocking, I know) and I have to admit that this whole process has been driving us bat-sh*t crazy.

Lack of communication is really what infuriates us the most. So much so that it lead me to call out Yates County and our Service Coordinator on it. In a lengthy, bitchy-yet-professional email. I do my best arguing in print. It gives me time to really proofread and develop a strong argument. After a little back and forth, we finally feel like we are getting somewhere not only with his equipment but with some other things as well (like Speech Therapy and Happiness House). We also decided that it was time to change Service Coordinators. We've spent way too long just dealing with the people that we've been working with instead of demanding better. It was only hurting Jackson. So, starting in a few weeks we will be working with a new Service Coordinator. Jackson has a little over a year left in the Early Intervention program and we want to make it a good year before he transitions out. I think this change will definitely help us accomplish our goals.

But in the meantime, we are still waiting for the chair and stander. And waiting, and waiting, and waiting. "Patience is a virtue." Repeat. "Patience is a virtue." Repeat. "Patience is a virtue." Repeat..... ;)

Read More 0 Comments | Posted By Robin

Another Smith Family Blog

I started this blog as a way to keep family and friends, near and far, up-to-speed on what was going on with Jackson. Jackson was born with Spina Bifida and Hydrocephalus. When he was born, he had to have surgery to close the lesion on his back and then had a follow-up a month later for his shunt placement. My goal was to make sure everyone got an updateon how things were going and what better way to mass-update then the good ole interweb ;) And since everyone isn't on FB (WHAT!?!), I figured that a blog would be the next best thing.

Since then, the blog has morphed into a plethora of stuff ranging from date nights, favorite recipes (okay, haven't posted any recipes yet, but they are in the works), our dog, our house, my awesome hubby, projects from Pinterest that I actually complete, SB awareness and what's going on in Jackson's world. I'll be honest, it's 73% about Jackson and raising a child with SB, at least according to my last calculation. Oh, and pictures. Lots of pictures.

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"This is How I Roll!"

Let's Play! Our Day at The Strong

Here's What's Happening in Jackson's World: The Bath Chair has Arrived!!

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