New Braces!

It was time for some new braces!

This is always an exciting time for us. New braces means the opportunity to stand straighter, taller, steadier as he has outgrown his old braces.

We also get to work with Eric at DP&O who is always excited about the opportunity to try new things to get Nick to challenge himself and get him to the best of his ability.

 

Because they do all of the work and adjustments onsite, we have a long wait in their gym.

It started with Nick testing out his "please-can-I" face. With the lip out, head tilt and squinty eyes. He has been doing this all week, because he told me "It worked on you last week"

In the gym we tried some baseball (high knees and balancing of course)

He was getting discouraged because he couldn't hit the ball. I told him it was probably the pitcher. We upgraded the ball and he got it no problem

Then Nick found an air pump. He had lots of fun spraying me

Then it was time to test them out and see what the new braces can do!
One of the new things we are trying out (along with a new parts for the hinges) is that the plastic part is at the front of his thighs, instead of behind.

The straps at the ankle are different and more diagonal. And it is set to tilt him more forward and less letting him rest back in them.

While the braces went back, Nick had a little bit more fun in the gym.

He told me "mommy, close your eyes"

He thought it was so hilarious!

Pretty soon the braces were ready and we were out the door!
The design that Nick chose was Star Wars (of course).
His favorite is Star Wars Rebels.

These 2 are on the top braces, and the one below is on the bottom brace.

Nick loves them.
And he likes that it looks like they are fighting while he is walking.
I hope these braces work well. I can see Nick walking straighter. Less toe-walking.
And I hope that we can get some more independence, and hopefully get back on track for standing unassisted and then walking unassisted.

New braces are always exciting!

More walking

Nothing like a little challenge.

When we were at Toronto Island I wanted to challenge Nick and see what he would do if I took off the 'K' from his KAFOs. And then of course he decided to challenge himself further by walking over cobblestones

 

 

My thought was since the testing and surgery came from needing more bracing, now that he has had the surgery and is/has recovered so well, we should see what he can do with less support.

 

 

When we got home I took a video of him on some stable ground to see how he is.

 

His knees are more wobbling. But they have been supported for a year.
But he is able to do it.
And it is a balance between bracing him too much and compromising muscles getting stronger, and not bracing enough and causing injury or incorrect (cheating) form. What we want is enough support to allow him to be functional and not waste his energy and strength.

The SB way to measure growth

Forget ticks on the wall, this is how I can see how big my boy is getting!

  

Maple Leafs, Backyardigans, Pirate Mickey, Ninja Turtles (my favorite) and Avengers!

New Braces

So the day had come for us to see our new braces!

I am having very mixed emotions about these. It is always exciting to get new braces when Nick starts outgrowing his. But the recommendation is to increase his bracing to 2 KAFOs. Which means that he will have 2 braces that go above the knee.

This gives his knees extra support and will make his stance stronger and stable. It is what he needs.

The mixed emotions comes in that he does need more bracing, more awkward bracing, more bracing that puts him one step closer to not wanting to use it as he gets old, one step closer to using a wheelchair all the time and one step away from any possibility of independent walking.

Of course the truth of the matter is that this is not new, and I can see with my eyes that he needs to the extra bracing.

The day came to pick it up. We went to a new orthodics place connected to Grandview. It is Called Design Prosthetics Orthotics and we have had an amazing experience with them!

We had our appointment to pick up the orthodics. We went to their office and the kids played in their gym with all kinds of toys.

Then it was time to try them out!

The braces have some neat features!
The K part of the braces slides into the bottom. This gives us the best of both worlds. The support of the K, but the ability to have the shorter brace when we aren't doing much walking.

The knee also has the ability to lock, which would make him much more stable and functional in specific instances, but still maintains the ability t o bend and be unlocked.

Nick liked them!
I can't believe how tall he is standing! And straight.

Our Orthotist, Eric, still had some adjustments to make, but the workshop was right in the office.

This is different from when we got our orthodics from Grandview before. And any adjustments had to be made out of the office and it would be a couple of weeks to be returned to us.

But Eric knew what he wanted the braces to do and could make all of the adjustments for us today

While we waited we got a tour of the workshop

This is a copy of the cast of Nick's legs and knees that was done last month. It gets mounted so that they can work with it.

And a bunch of other samples that they are working on

He shows us the material they use to make the braces

And samples of different colours. They had a sewing station as well

And finally we checked out the grinder. Nick got to turn it on

This is an example of one of the rejects

Then it was time to test them out again!

And see Nick standing up so straight!

No more knees turning in and feeling unbalanced. Nick felt very comfortable in them

Everyone is very excited with the results!

And the smile on both of these faces helps to over-ride my negativity.
And seeing him so stable and upright actually makes me more hopeful that he will do anything he wants!

New Braces!!!

It was time for new braces again!

I asked for another orthodics appointment in May because I felt that they just weren't high enough any more. After our appointment in December when they said he still had growth, I wasn't sure if I had to make my case or not. But there wasn't any problem this time.

 

As usual I came all prepared with what design I... I mean Nick, wanted.

He has been on a Teenage Mutant Ninja Turtle kick lately, especially Michaelangelo ("my favorite colour") so I found a whole bunch of different options and Nick got to pick what he wanted.

 

There was no question about what colour to do the background (after the while background of our backyardigan braces I also specify something)
They came out fantastic!

Nick started showing off as soon as they were on him.
He stood there (bum not touching), and stood there... and stood there....

And he is standing so much straighter!

We have a wearing schedule right now (1 hour on, 1 hour off, then 2 hours on, 2 hours off) for a bit until he gets used to them.

Nick wanted a picture of all of his old braces

I think he has grown a bit!

Losing the "K"

So after our appointment, Kyle got out his tools and off came the knee attachment from Nick's braces!

 Still straight!

It hasn't held Nick back at all.
He is still standing up straight (not like last year) when we needed it to begin with.
I am so happy about that!
It doesn't do anything about his feet turning in though, so we are going to deal with that in the spring (for now I'm kicking that monster back under the bed)

We had our orthodics appointment today, the one I've been asking and preparing for since October.
I was disappointed, and so was Nick.

We had talked about new braces, and what design he was going to get.
But when we actually got there, the orthodist thought he could make some adjustments to his braces to make them last longer. (and without the 'K' part, it does fit better). But if they are working, I can't really argue that he needs another pair just because it has been a year.
It was just a surprise that he wasn't actually due to get more.
Nick didn't understand why he wasn't getting his backyardigan braces though.
But at least we have our design all ready for the spring.

Brace Yourself ... revisited

Thought I'd show a comparison for the braces to see how much Nickolas has grown in the last year.

 

We did have some skin marks when we took his braces off last night.
The red mark from the top of his brace against his skin, and a mark from a screw? Both these marks were gone by the morning
We put on more socks and baby-legs today and so far so good.

Brace yourself!

 I have been waiting for months to get Nick's new braces. And the day finally came to pick them up!

I was disappointed with the design on the last braces that I wanted to be very specific about our next ones.

I wasn't there when they were fitted, but I sent Kyle with very specific instructions. And talked to the orthodics guy multiple times. It still wasn't exactly what I wanted. But it is close enough

 

I had a number of different pirate options for Nickolas to look at - and of course he picked pirate Mickey!

What I wanted was for the picture to be wrapped around the entire AFO so there wouldn't be any brace showing, but I think there was concern about the picture becoming fuzzy, or they didn't get what I mean. But this is what we have.

Nick loves it - so that is the important part!

 

 

These braces are special, we are trying something new.

Something that is going to help and I'm excited to see what the help will do. And that excitement is trying to stomp all over the feeling I have in the pit of my stomach.

So let me explain.

 

See how Nickolas is standing in this picture.

See that left knee of his bending in.

 

 

It's been doing this for a while and we tried a couple of things in the summer in see what helps. I thought I had blogged about, but apparently I didn't.

it is only the left side that is showing this weakness. And needed the support. We tried twister cables - or made up twister cables. But it didn't do what we wanted it to - and I think they have to go over the clothes which is not what we wanted.

 

 

So the next step was a KAFO. Which means Knee-Ankle-Foot-Orthodics. This provides support at the ankle, but also at the knee. And also prevent that knee from turning in. And will make it stronger. It will still let him bend his knee and move, but with more support.

Some of the stomach feelings were the picture in my head of Forest Gump and his metal braces, but also that it feels like we are going backwards. That I want to take away the bracing, not build it up.

But that is not how spina bifida works. And I know this deep down. As Nick gets older his gets heavier and taller and more active and he will s how us what is needed - and he is showing us he needs a KAFO on the left side.

So today was the day!
We decided to go with Grandview - which is local - for orthodics this time. They run clinics on Thursdays and our PT comes to the clinic as well, so I felt comfortable doing this here instead of through Bloorview. And apparently they are all made at the same place anyways.

So here it is...

The metal is still a little scary looking, and I'm not sure how his skin will tolerate it. But the top part is made with softer ?plastic? that should be ok against his skin.
And it's definately bulkier.

Kyle and Nickolas got to play while they were working on some adjustments

 

Then it was time for a trial to see how he walked with them.

 

 

And we discovered that since Nickolas is standing up straighter, he needed his walker height increased as well (for the second time in 2 months)

Never noticed how much he was bending down and leaning forward...

 



And then we were off!
(The whole trip lasted 45 minutes)

Of course I wanted to take some pictures of Nick standing up straight ...
(maybe a little too straight)

We had to get Nick some new pants that aren't so tight over the KAFO, and of course new shoes and new winter boots (actually found some with minimal difficulty - at Walmart)

Nick doesn't seem to mind them (so far)

During potty time he was telling me he wanted them off, but I think that was just becuase his legs were exposed and he coukld see there was something there.
But he was starting to feel more comfortable standing and testing being hands free - so he must be feeling more stable with them.