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!

Monday, January 28, 2013

No family like a Snow family - continued

When Katheryn got home from school she saw our snowmen and wanted to finish the family.

I started it off, but Katheryn was determined to make the snowman all herself!

Even if it got really heavy!
She put together most of her snowman herself


 The carrot nose was very important

Katheryn wanted the Daddy snowman to have a smiling mouth

We were fighting against the rain and the depleted amount of snow on our front lawn to finish our snow family.


The Daddy

And an updated Mommy

Katheryn posing with all our creations!

By this time it was raining, and I expect that these pictures will be the only reminder of our snow-filled day by tomorrow!

No family like a Snow family

Today was a snow day. Perfect snow, snow man building snow. Nickolas was very excited to go out and build snowmen!

He wanted to build some snowmen on the front lawn. We brought out the walker, but he couldn't get it moving in the snow. We used it so he could stand up

But when it was time to start pushing the snow around he had to get down on the ground.


He tried pushing the snow, but it was heavy, and wet.

 Nickolas took more of an artistic director role.

We had a mommy

A doggy
(Nick was upset that he didn't have a hat)

A boy

Nickolas' favorite was the boy, because he had a green and black hat.

He also liked that he had a walker just like him, because mostly he liked the hat and the carrot-nose.

Sunday, January 27, 2013

Some imagination

OK Maybe 3 isn't as horrible as I may have made it sound.

What I have found and loved is the imagination that has bloomed and developed in Nickolas. On top of being very specific about what he loves and likes - pirates and backyardigans topping up this list, he wants to play all the time.

And both the kids are playing together. Yes they have been playing together for a long time. A lot of it was Katheryn playing and directing Nick about what to do and Nick saying yes, yes, yes.
But now Nickolas is directing Katheryn! It is his ideas that they are playing out.
Nick pretending to be a rocket ship and flying through space

Nickolas is a little bit obsessed with his "Back-e-gans". He watches the same 2 episodes over and over and over again, and then acts them out, alone or with Katheryn.

I love watching the kids playing together, and hearing Nick explore his imagination. I can't describe the joy I get from watching my children grow before my eyes! Imagine that!

Thursday, January 24, 2013

Finding a balance

I'm having a hard time some days to find a balance.

Since Nickolas has turned 3 I have found him to be (and I feel like a horrible mom to write this) a winy kid. He doesn't want to go up the stairs, he doesn't want to sit on the potty, he doesn't want to crawl, he doesn't like anything wet on his skin, he wants to be in this seat, or that seat, he wants his sister, he wants his mommy, he wants his daddy.
Nickolas has found his voice and know what he wants, and what he wants is to say no.
A lot.

At first I was thinking maybe this is shunt irritability? But it's not something that happens suddenly or all day, in between all of these no's he is happy and smiling and laughing and a great kid.
But I'm finding it a little bit difficult. I need to balance between listening to his voice and wishes/wants and letting him know that he can make choices, while helping him to grow. Maybe I'm expecting too much from 3 years old.

I don't remember 3 years old being like this with Katheryn. At 3 Katheryn would be having a meltdown and I could talk her down. It was great. I liked 3.
Nickolas went into a whole hyperventilating meltdown the other night because he couldn't have a lollipop before bed. I had to leave him on the bed to calm down because telling him 'no' only made it worse. He kept crying "I don't want mommy to say no to me" in between catching his breath.

All of that is just behavior, age, maturity I think. I can't compare Katheryn at 3 with Nickolas at 3, that's not fair.
Nickolas will get a time out when he is naughty, when he needs to calm down. But he isn't generally naughty and doesn't need many time-outs. Katheryn definitely wins that count hands-down.

But it's not just the tantrums. He's a kid, kids have tantrums.

But now I need to find a balance with mobility issues.
Nick doesn't want to crawl up the stairs. He wants to be carried. He used to love climbing the stairs with Katheryn, half the time he'd be up before we even knew he'd gone anywhere.
We readjusted our family room so he is able to walk and cruise around pretty much the whole room. That's where he wants to be. It's a step down and his walking doesn't fit so we haven't been using his walker a lot in the house. He doesn't want to walk up and down the hall in a line with his walker.
Sometimes I don't know what to do.

In the evening Nickolas wants to be with me all the time, it's hard on him when I go off and work nights, or I'm on a long stretch of shifts. Just tonight he was standing in the family room, crying for me to come and get him. I was ignoring him. Not answering him when he was crying that he wants me.
Trying to get him to come to me.

I feed into this, I know. I need to work on it. It is easier for me to carry Nickolas down the stairs in the morning and put him in his seat for breakfast. But I'm missing a prime opportunity for him to move himself, just because in the morning we always have time constraints.
I think this has to be a goal for me, and for him.

Because I really need to find a balance. I feel that we are in a rut at home.

Wednesday, January 23, 2013

Cover Girl

This month was very exciting for us, I spent almost 2 weeks checking every magazine stand we passed. Because we "know" the cover girl of the February issue of Parents Magazine! Her name is Emily and her mom blogs just like me. Emily is just 6 months old than Nickolas and was also born with spina bifida.

I finally found it! Of course as soon as I found it, I had to take a picture.

I wanted to show it and share it with everyone. When I was paying for it the cashier shared that her brother uses a wheelchair. I showed my sister, the girls at work, friends I saw.

When I got home I showed it to the kids. Nickolas thought it was great that she had a gold walker! Gold! And Katheryn wanted to read the magazine and look at the pictures. We had a little talk about why it was special that she was in the magazine. That she was born just like Nick, with a boo-boo on her back.
They were both impressed that someone was just like Nickolas. And Katheryn wanted her picture in a magazine.

Emily on the cover of a parents magazine is not a little thing.
It is the first time a child with a disability is on a mainstream parents magazine. I want to put it in every obstetricians office, screaming "this is what spina bifida looks like" just like any other kid, only with a walker and some cool braces. She is adorable and happy! There isn't any article in the magazine talking about what it is like to have a child with spina bifida, the article she is on is about making valentines day crafts.

There is a quick little blurb about the cover girl on the first couple of pages, and it talks quickly about what spina bifida is. Online there is an interview with her mom, and a follow up blog from a writer for Parents magazine.
I'm not sure what I like better, that the purpose of her being the cover girl in the magazine was just because she was super cute, or that it gave an opportunity to show what spina bifida looks like. It's kinda contradictory that I'm glad the article she was in had nothing to do with spina bifida while showing off what a child with spina bifida is like.

Wednesday, January 16, 2013

More Bike Riding

We had another PT session today.
All Nickolas wanted to do was get back on that yellow bicycle!

We are looking into some options to get a big boy bike for Nick - because he is a big boy now!
Grandview has a bike fair in March that we will go to, and hopefully get some information to make decisions about what we need. And we are looking at some other options right now to try to get funding or something reasonably priced.

Do we get a large trike like this? Do we get a 2 wheeler with extra large training wheels? And of course we need the 'parent stick' or guide, foot pedal holders, extra support for his seating.
Oh yeah, and Nickolas has already picked out the colour of his future bike - blue.

Sunday, January 13, 2013

I want to ride a Bicycle

Last week when we were at PT with Katheryn, she spent alot of the time riding around on one of the bicycles. And Nick wanted to ride a bike too!

We got Nick a toddler bike almost 2 years ago. And we used it a lot more this past year.

But I think he will have outgrown it this year. Except it has a lot of the options we need. A higher back and seat belt for balance, a push bar for parents. I also wanted to figure out a way to keep his feet in the peddles. That was a lot of the difficulty for Nick this year. He might want to push the peddles, but he had to concentrate so much on keeping his feet on the peddles that pushing wasn't an option.

So this week in physio, they tried out a bike.

I was working - but Kyle took pictures. Nick was very excited to tell me how he got to ride the yellow bike at physio!
And of course the smile says it all!
Nickolas was able to peddle the bike with minimal help, and had so much fun!
I guess we'll be hitting the bike fair in March!

Saturday, January 5, 2013

Pirate Hunting jacket!

 Every week at Physio we put on Nick's special jacket and go pirate hunting!!
We started 2 months ago with the hardness, just at the end of our last physio block to get him used to being upright and hands-free.
Look at those super-fast feet!
We are always trying to do something fun, and pirate hunting has just stuck!
 (Sorry for the background noise - the treadmill was really loud today)

We spent the whole session walking on the treadmill, kicking balls back and forth and just moving, moving, moving.

He is getting much better control.
He can actually move himself around the room without additional help

And he likes it!
There is a part in this video where he reaches and says "I can't get it". I couldn't helpful myself by saying "Use the force". I just couldn't help it.

And of course he loves that both the kids could hold hands and walk.

This PT session was a bit crowded. School was still out and we had a dinner date afterwards so the whole family was there.

Friday, January 4, 2013


The kids went bowling for the last day before school restarts!
I had nothing to do with this, and our daycare provider Jennifer Daviau is the most amazing person ever! She organized and took them, and took pictures.
At first I thought "oh Katheryn will have fun, but how would Nick be able to bowl?". and how?

There is a whole contraption for Nick to just push the bowling ball.
He had so much fun! When I got home from work he was excited to tell me how he was bowling.
The kids love the bowling app on our tablet, so they get the concept, I just thought they were still too young.
Guess I was wrong.

I know a lot of parents have had concerns and problems finding daycare for their kids who have additional needs. We have not had a single problem with Jennifer and that has just reduced significant stress from when I had to go back to work.
Need to learn how to cath - no problem.
Need to drop off Katheryn early/stay late for appointments - just tell me when
Need a last minute drop off because we are heading to emerg - we actually dropped her off in the middle of a bus-run.
Becoming accessible, using the walker, AFOs, (and now the KAFO), latex-free, symptoms of shunt failure, medications the list goes on and on and we haven't had any problems.

It has been great to have someone who does not see spina bifida as holding Nickolas back. They go out on all the day trips, things may be adjusted for Nickolas but they are still done.

Tuesday, January 1, 2013

A sleepy start to the new year

As I was "pushing the in the new year" at work (as a labour and delivery nurse)

Kyle had a whole night of fun and games planned for the kids to bring in the new year.

This is how I found the kids first thing in the morning, and how they were from about 9pm new years eve.

Happy 2013!
We are hoping for a lot of exciting stuff this year!