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!

Wednesday, November 30, 2011


I have noticed that Nick will sometimes get staring spells.
Where he will just zone out and stare at something. I mentioned it to our pediatrician and also that I had looked up that sometimes these can be ‘abscnence seizures’. After mentioning it to the pediatrician I’ve also had other friends and family mention that they have noticed it as well.

So he ordered an EEG. And he said the words 'epilespy' which completely freaked me out. I also contacted Nick's neurosurgeon, just in case it was something he should be aware of.
But my understanding of the EEG is not for epilepsy, but sometimes kids with spina bifida will have seizures, just because of the way the brain might be.
No big deal right, just hook up some wires and see what happens.

The morning we were supposed to go I started to get a little nervous. I had the whole day planned.
We had physio in the morning. And it was pouring rain. I had both kids (and luckily my mom). Having the accessible parking sticker is great, especially with a wheelchair. But not in a hospital – where you have a total of 4 spots in the lot I park in (as staff). So I dropped everyone off. And ran through the rain by myself.

We got to visit everyone at work and both kids charmed everyone. I had Nick in his wheelchair and he is getting so good at moving himself around when he wants – even going backwards!

Then it was time. I took of my staff ID, hoped Nick was suitably tired (they said to schedule it around nap time - what nap time?!), had my camera, my book and Nick in his chair and off we went to find the place.

We didn't even have to wait very long. I was surprised, but pretty soon we were in the little room and all set up to be comfortable for 1 hour or so.
Of course out came the camera and the request that I would like to take pictures.

So this is the equipment.
Camera, wires and computer

All of the wires had to match these ones. And they had to be equal, and they had to be in the right place. And of course stay on.

How do they stay on?
Well this cup of gunk is like gel.
Nick's hair is parted, some of the gunk is put on, then the end of the wire then a little 2x2 dressing and the whole thing hardens and stays together.

All over his head.
I'm holding him and trying to distract him and keep Nick from pulling anything.
Really the head ones weren't bad.
But there are a couple of that go on his face, and those he hated.
Then his whole head is wrapped up in dressing and we want him to fall asleep!

The EEG guy took the picture for me.
See how happy Nick is about the whole thing?

Surprisingly he did actually fall asleep!
And I had my book to keep my company!

Finally all of those wires could come off!

And Nick with his brand new hairdo was ready to get out of there!

 Results in 2 weeks.
The EEG guy said it looked good. Hopefully the neurologist will agree.

Saturday, November 26, 2011

Morning Workout

We have a new morning routine. We started it a couple of weeks ago (and this particular workout is from November 19th) and even though Nick is being his stubborn self at the beginning. We still did it.

Be sure to notice the expression on Nick's face - that "I can't believe she's making me work like this"

But mommy cuddles at the end (I guess I wasn't completely in his bad-books).
This day it took 20 minutes to walk the length of our dining room.
But he did it.

And he is still doing it.
It was hard that day. Hearing and watch Nick scream and struggle (and swear I'm sure),  was not how I wanted to start a Saturday morning.
But that pay-out has been incredible.

And he wasn't permanently scarred - a quick cuddle and everything was good!

Tuesday, November 22, 2011

CE - Continuing to be Extraordinary

We've been enjoying another semester of conductive education.
And we are continuing to see some great stuff. Our conductors are Abigail and Fugie (which I know I am spelling completely wrong - sorry!)
I brought my camera out a couple of weeks ago, to get some pictures of our conductive education session. We have been going weekly from October - December, 2 hours each Wednesday.
We have 2 conductors who are working with our very own spina bifida group.

I LOVE this peanut ball. It does wonders for Nick's balance. The more he's on it, the more he can sit all by himself. (I want to find one to have at home).

And one of the best parts of conductive education  - is that we are not alone!
You might recognize Alejandra from past posts - our walk, and also from helping hearts. Yup, Nick's first girlfriend.

We do alot of things to increase awareness of Nick's body. Like splashing in the water and seeing how his actions will move the toys. And feeling the water - even if Nick we aren't sure how much sensation he has in his feet.
Nick has started to move his toes more, before I would only see it sporadically. Now I see it all the time. I think getting Nick to look and pay more attention to what is going on down there is really making a difference!

Nick has been showing off these last couple of weeks.
He does less complaining when we get him moving in different ways, like this wheel barreling.

And when it's time to get up on the plinth (the plank table), Nick is a go-getter!.
He gets this look like. OK I know what you want, I can do this. And just starts pulling himself up.

We usually have some type of craft to do. Our theme this week was a fishing story (therefore the water and now the fishy sun catcher craft).
Lots of colours to choose and play with. This week Nick has decided to show off that not only does he know his colours and his numbers - but he feels like sharing this knowledge!

He really liked doing this artwork. The gluing and then patting down.
And voila! His own creation.

Then it was time to get going again.
Nick likes doing this part. He pushes himself back, stands up and then pulls himself up on the plinth. Just a 'OK mom, I got this'

Nick likes showing off one of his newest accomplishments. Crawling on his hands and knees (without shoes on his hands)

Gotcha! Flashlights are definitely an all-time favorite

OK fun's over. Time for more ... fun/work!
Kicking over some bowling pins. But to make it work harder, we've moved the bowling pin into a block. So now it's not just kicking, but lifting and kicking. It also helps Nick to see what we are doing too.
I've noticed that when Nick is flat, and I'm trying to get him to kick or something. He has problems seeing what I want him to do. Because 'duh! he's flat on his back and can't see. Once he knows what we want, he's pretty good with playing along.
We also work on isolating his legs. So instead of kicking with both legs, one legs stays straight and the other one moves. Helps Nick to learn about isolating his body.

And more play! Shake, shake shake!

Oops, and more work.
Look has upset that boy is. See that anger!

But look! See that leg staying up - all by itself!!
You go Nick!!!
This was definitely something that he wasn't do in September!

Nick definitely has his favourite things to do!
Putting rings on his feet

Rolling up and down - he was actually laughing

Then it was time for more walking!
These foot print things were great to get Nick to put his feet in the right spot - something we are working on. Because Nick usually just lets his legs go everywhere!
Abagail is helping with the walker, because the stoppers stick to the carpet.

The pads also make sounds - and of course they are coloured and numbered. (Learning everywhere!)
We got something similar at Nick's birthday.

The keep with the fishing theme - we went fishing!!
Nick is leaning against the wall and holding.

And because he had worked so hard today, we let him have a seat!

Finally we had some more 'cicle time' and let him sit - on a balance board.

It's no wonder this boy is so tired on the way home!

And because Nick is doing so well with the walking - we've started to walk out after we say good-bye.
And he is doing AMAZING! Last week Nick just kept walking and walking and walking!

Nick has been doing so great with this semester of conductive education.
Unfortunately with costs and time and travel, we have to take a break for the winter semester. I am so disappointed, but hope to start again in the spring.

I'm still hoping to get insurance to cover this semester of conductive education. We were lucky enough to get the summer 2 week semester funded by a local charitable organization - For the Love of a Child.

I think that Nick has been able to do so much because of the nature of conductive education. Making him aware of his body, and aware of what he can do. Repetition so that he feels that he is in control, and lots of stories and songs and fun, with some learning stuffed in there too!

Sunday, November 20, 2011


That's my kids.
My kids are amazing. You should be jealous.

 I know my last post was a little blah.
But the kids really know how to cheer me up.

Hug Fest!

 I feel much better now.

Saturday, November 19, 2011

Wheelchair Trials

Sometimes I think the wheelchair trial is not so much a trial for Nick, but as a trial for mommy.
I've mentioned that I don't want it in the house, the purpose is not for independence in the house, it's for independence outside, therefore the wheelchair stays in the car. But we want Nick to get used to it, to get moving in it. So we have to get out and about.
We’ve spent the last week out of the house every day.
Our first outing to Walmart did not go very well, Nick didn't want to be in the chair and he didn't want to push himself anywhere. When we went to the zoo he did better, but mostly I pushed him and he would go in a 5 foot area. But what I really wanted was for him to move himself more. I want him to be completely independent. Now. (Yes I know he has his own timeline...)
So we kept going at it.

I've also bought Nick some bike gloves which have really helped his poor little hands when we are wheeling around outside.
We've gone out every day to different places. As well as the zoo, we’ve walked the neighborhood, gone out to restaurants, shopped in stores and visited. We’ve been very visual.

Where ever we go, I'll leave Nick in an aisle or something and then see what he'll do. I'm trying to give him his space.
Every day we out he is starting to get more and more comfortable. He's doing well going to something he wants, now I'm just having difficulty getting him to move himself away from something he wants. Imagine that.

But I'm finding it a mommy trial. I'm finding it a bit harder than Nick is.
It's not that we are getting alot of stares or anybody has really said anything. I'm sure we’ve gotten stares, but I stay in my own little bubble and don’t really notice other people. I have had a couple people ask me why Nick is in the chair (along with how old he is). One man kept saying, "that's too bad he's in a wheelchair so young". He said it a couple of times. I've also noticed some other people go out of their way to be nice to us - which is nice.
But it's that we aren't invisible. We aren't just another mom and kids out shopping.
Now we are that mom with her kid in the wheelchair.

I know that today I am being selfish.
How can I tell Nick or Katheryn that being in a wheelchair isn't something bad, when it just makes me feel bad.
I know that tomorrow I'll feel better about it.
Tomorrow Nick will show me how much it does for him.
Tomorrow Nick will continue to show me that he doesn't think it is something bad.
Tomorrow Nick will show me that he doesn't care or notice if people stare. Let them stare - he's a rock star!
Tomorrow Nick will continue to chip away at that heavy feeling in my chest when I see how much he has to work to do things we take for granted.

I guess that's why we have trials. To learn, to endure and to overcome.

It also doesn't help that I hurt my shoulder hauling that thing in and out of the van! I can't wait until we get the lighter one to trial. Boy do I hope he likes that one better!

Sorry no pictures
I'll do less wheelchair complaining next time. Because Nick really is doing well with  it.
And he's doing well with his walking too!
Posts will come - I already have the pictures taken.

Thursday, November 17, 2011

Wheeling around the zoo

OK, so I wrote this whole post yesterday, left it overnight to finish downloading a video. Came back this morning and it was completely gone. Not even in my draft posts. So here we go again. Hopefully this one will be as awe inspiring and wonderful as the erased one from last night!

I think I've done a number of posts about the zoo. Well, I love the zoo! I love the animals, and I love how the kids love the animals. It's free (well if you don't include the membership and parking fee), it has indoor and outdoor stuff. And they have their favorites!

As soon as they mentioned wheelchair all I could think of what that it would be great to bring to the zoo! I got out my calender and tried to find a free day that we could devote to the zoo and trying out those wheels!
Now that we have the wheelchair I knew it was time to pack up the kids and head out. So the 3 of us spent a nice Monday at the zoo. Which was perfect because it wasn't very busy at all.

What I wanted was for Nick to start to realize that he could move himself where he wanted to go.

The first place we went to was the polar bears. You might remember Katheryn's obsession with the polar bears when we went for her birthday. Nick now shares the same obsession.
Because I had the joy of experiencing Nick's first public display of two-ness!
The polar bears were not really out. And Nick really wanted to see the polar bears, and when I was taking him away he threw a yelling, screaming, kicking fit.

But then we made our way to the penguins. And the penguins were great!
These little guys were great motivators!

It was great for a wheelchair trial. In a nice flat area, not alot of people and the penguins came right up close. I could get Nick to move himself up as long as I didn't have him too far away. Too far away meant crying and pointing.
But I guess a little bit at a time.

Then I thought, hmm that ledge looks perfect for some standing.
So we did that too.

 I think we should just visit the penguins for some physio every day!
Except they are at the top of the hill, and the zoomobile doesn't run again until the spring. And pushing a wheelchair down a hill is kinda difficult.

But we weren't done with the animals yet!

Katheryn wanted to go and see the monkeys. Usually they come pretty close too, but not today. Nick still liked watching them from the distance though.

And Katheryn wanted to play.

As long as they are happy!

This video is a little long, but I was trying to get video of Nick moving , and Katheryn wants me to play hide and seek with her!

Last thing we did was see who was making all of that noise!
Can you see it?

The lions were very vocal today!

The zoo was fun, but exhausting.
It was a good trial for Nick's wheelchair and it is just the beginning to show him everything that is out there, and all that he can do by himself!

I almost forgot. When we were leaving, we went into the gift shop. They were starting to decorate the Christmas tree and the lady in the store let Katheryn and Nick help! Katheryn kept telling her how we decorate our tree at home and Nick kept wanting to keep all the sparkly ones.

I guess this shows they will have fun in a couple of weeks when our tree goes up!