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!

Summer Fun

Nick had a follow up orthodics appointment.

Have a mentioned how much I love our orthotist, Eric, and his passion for the job. And his job is support Nick in getting him up and moving to the best of his ability.

 

 

We have appointments every couple of months to make adjustments as needed.

While we wait we are in a giant playroom. The kids love it.

 

 

They find new things to play with every time we are there.

Because they can do all of their adjustments right in-house we are usually there for a couple of hours. But the kids have more fun waiting

 

Afterwards I thought we would put our bowling coupon to good use. The kids have free bowling through the summer thanks to BowlingGivesBack. We got free bowling last year (and I upgraded it to a family account last year and we never went). So this year I wanted to get some bowling fun in!

 

And we all had fun

 

Even if some of us were not very good

Katheryn had this pose every time she shot!

And she really liked getting Nick all set up for his shot as well.

Katheryn has turned into a little bowling shark!

Of course we all used funny names to play. Nick was Cap, Katheryn was Hera (a character from Star Wars Rebels) and I was Ms Marvel.

I think the kids had fun, and even though we can mark it off our bucket list, we hope to come back again!

But Katheryn and my day wasn't over yet.
Katheryn has been begging us for a haircut. She wants to cut it all off. We did get her hair trimmed before her first communion and I told her if she still wanted it shorter after a month, then we will do whatever she wants.

This is the before...

Katheryn knew exactly what she wanted. She wanted it very short, above her shoulders and closer to her chin. I had a hair appointment (which takes 3 hours to get the purple in my hair), and so we scheduled Katheryn in the middle of it.

Overall we had a great day!

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!

Orthodic changes, and another 'K'

We had a follow up with orthodics today.

I wasn't really sure if we were going to get more orthodics or not. But we were going to discuss some options.

The 'K' has been brought up again. As in KAFO

And even though we were so happy when we got rid of the 'K' 2 years ago when I see how straight he was after and then look at him standing now.

I know that we need it.

Nick is putting a lot of pressure on his knees. They are twisting and especially on his left side, the ligament is starting to stretch. Once the ligament is stretched it stays stretched. (I think it is 1cm longer right now). So the emphasis is on preventing it from stretching.

Of course if it is stretched it isn't supportive. What this means is that if he can't count on his knees for support, and he is only going to get older, taller and heavier. His left knee is starting to hurt him when he is walking all day.

So we tried some things

Nick was not that sure about it

These are called Gators and they support his legs and knees and keep his legs straight. They are bulky but they wanted to see what he would do

Once he was able to show off his walking with it, then the 2 PT's and the orthotist talked about our options. We have our PT from Campbell's who is with us for another week, and then we will transition to the school age program and a new team.

Everyone was discussing what we wanted. There is a new KAFO where the 'K' is removable. This answered all of our concerns. There was the knee support for when he needed, and it could come off when he doesn't need it. There is also talk about locking and non-locking. I want him to be able to bend his knee, so it will be non-locking. But there was a question about the type of jointing to use. So we'll see what we end up with.

Luckily we had already talked about designs (something I usually spend alot of time planning). And Nick knew exactly what he wanted. A hint is in the story Corey is reading below...

 We'll get them in a couple of weeks I think. And I'm hoping that it will help to be more supportive to Nick.

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!