Summer weekend

Katheryn had Sparks camp this weekend!

2 days and nights of fun (all by herself)

Katheryn wasn't worried about leaving us, grabbed her stuff and was off with her friends!

She had so much fun! And at the end of camp graduated from Sparks with the rest of her troop.

She got very annoyed with my picture taking when we picked her up.
I expect I will see this face in my future... I just thought I had another 8 years or so...

Nickolas got to have his parents all to himself this weekend. So we went to a picnic at Grandview!
Queen Elsa was there

And Nick got to show us his accessible play ground

And he had a blast swinging on the swing!

And showing off his Ninja moves. He played with his friends from school that were there.

We did find out that Katheryn fills in a lot of the empty space. I don't know if I have ever heard Nickolas talk so much!
We sat and watched a couple of movies and he talked through the whole thing (until he fell asleep).
What is this, why is that happening, who are those people...

Having each child by themselves this weekend just shows Kyle and me how much they are growing up!

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.

Spina Bifida awareness video

I know that you might get sick of the same video every year. But I want to keep finding ways to improve it (and include current pictures).

So here is our updated 2015 awareness video!

Our 6th Annual Spirit Wheel Walk Run

The day of our event came. 

And we had a fantastic turn out!

We had 41 people come out as part of Nick's Cheering Squad.

We had families and friends, co-workers and school friends.
And we had 4 families with spina bifida together!

It was about half kids and adults, so we got a kid picture of everyone!
From 2 weeks old to 14 years!

Nick was very excited to start on his walk

We started relatively on time, with Nick leading the way

The weather was nice and sunny but not super hot.
So it was perfect (but I have said that I will walk rain or shine... shine is just preferred)

Everyone took turns pushing Nick, and he had a blast!

We stopped at the look-out and the kids had fun climbing up and watching all of the adults below

and I think the adults were glad to have a rest

The kids were playing a game and didn't want to go back! Except of course that that is where the food was...

We all posed for some pictures while we waited

But for some reason didn't get one of all of us together

I can see how our event has grown in the last couple of years. We used to be walk for the whole 3 hours. Now we walk more as a group together, everyone (almost) makes it to the look out, and then we walk back.

The leisurely pace we made let us all talk as we walked.
And catch up with other families

Katheryn and Hannah were together as usual!

Then it was back to the picnic area for some socializing and food

and baby snuggles

And Nick was doing lifts on his walker

We picnicked right beside the playground (too cold for the splash pad) so the kids all had lots of fun, and the adults weren't too far away

And I even had an opportunity to educate some people who stopped and asked us about our event

At the end of the day we all had another fantastic year of cheering on Nickolas!

Nick passed out soon after we got home...

Always a sign of how well the day went!

We are still fundraising until the end of the month

/https://www.canadahelps.org/en/pages/nicks-cheering-squad-2/

and I'm still working on some awareness posts and videos.

But you will definately see Nick's Cheering Squad walking, riding and wheeling next year!

Fundraising for our 6th SWWR

The Spirit Wheel Walk Run has been an annual event for the past 6 years.
We have walked in the sun, in the rain, in the cold and in the perfect weather (which of course is what I'm hoping for).

Our SWWR is about raising funds to support our association, the Spina Bifida and Hydrocephalus Association! This is the association that help to support families just like ours and really and truely knows that spina bifida is more than just a diagnosis.

It is a goofy smile

It is a unique taste in head-wear.

It is the joy of riding the Tea Cups (again and again)

It is about having your own hero

And knowing how to make people laugh

It is about loving unconditionally

And sharing a laugh

It is about working hard

And meeting new friends

It is about being a part of a family

and about taking the long way home

Spina bifida is so much more than a diagnosis. It is a life that is being fully lived

So if you want to come and support us, be part of Nick's Cheering Squad, then come and join our walk!

And if you want to fundraise, and raise money for our association, then you can donate to our SWWR and the Spina Bifida and Hydrocephalus Association through Nick's fundraising page

https://www.canadahelps.org/en/pages/nicks-cheering-squad-2/

Thank you for all of your support!