A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Sunday, July 5, 2015

Standing Frame

Nick has been using a standing frame while he has been at school.
It is a supportive frame that allows the user to weight bear without leaning on anything, and it leaves the hands and arms are free.


We had a standing frame when Nick was a baby, he got it when he was a year old with his first set of AFO's. He wasn't standing by himself yet and we wanted to get him upright with his peers and allow him to weight-bear and strengthen his legs and prepare them for supporting him.


And we used it alot to get him on his feet, and get him used to being upright.
But when he started walking in his walker, we stopped using the standing frame, and he eventually outgrew it.


 This year at school Nick has started to use a stander again while doing his speech therapy work. This one has wheels on the bottom so that Nick and the frame can move around (it is different from a mobile stander which has big wheelchair wheels so he can move himself while standing up).

This stander was bought for Nick for school and is designated for him. So when he starts at his home school in September, this stander will go with him.


So it is great for doing school work. When we were asked if we wanted to borrow any equipment for the summer from his school equipment we asked if we could take home the stander.

While we don't want to have any big and bulky equipment in the house that we don't need... After our appointment with our new physiotherapist and talking about how need for more bracing, I think this is valuable and we want to use it daily.


Nick likes it and asks to go in his stander "just like at school". When he knees start to hurt him, after about an hour, then he comes out. (I am really, really hoping that the new KAFO's will help with his knee pain).


We have some work books for the kids to work on through the summer.
Last summer we were concentrating so much on his upcoming surgery and recovery that we didn't do anything related to school and his teacher mentioned that he lost some of his knowledge through the summer.
So while Nick is still very excited about learning and school and using his standing frame, we are going with it!

Sunday, June 21, 2015

Happy Father's Day!

I have written a number of posts about Mother's day, well, because I write my blog and I am a mother... And even though Kyle isn't a big writer, doesn't mean Father's Day should be excluded from our family adventures.

So while Kyle is not my father, I will still celebrate him as the father of my children. and the one who is in this adventure with us!

Right from day 1,  presenting our daughter to the world.
The biggest smile I think I've ever seen on Kyle's face
And of course Katheryn is totally a Daddy's Girl


And while our world was shifting, you provide the stable base to our family, the positivity and belief to my worrying and wondering. Knowing that you are where our family needs you to be. That is what being a father means, to me.

From the first time you got to hold Nickolas in your arms


To boosting the kids on your shoulders


To one of the best Father's I know!


While our adventure continues, I know that my kids father is one who will make them proud


(and who is incredibly proud of his kids)


And to two of the Father's that have lead to way



Happy Father's Day!

Saturday, June 20, 2015

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!

Wednesday, June 17, 2015

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.

Saturday, June 13, 2015

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!