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!

Friday, February 28, 2014

School News

Nicholas has a fantastic time in his Campbell school.
He has best friend, he has a girlfriend, he has a boyfriend. He talks about his friends all day, everyday. He wants to invite friends over, to the cottage, in the summer... Whatever we are doing he wants to have his friends along.
When he's home from school he talks about his bus drive. What his bus driver did, what they saw, what songs they sang.
We have beans so happy about his experience at school.

It is not just the social aspect of the school. Nick is learning so much!
He can read books (with a lot of encouragement), he writes name, he spells his name (all the time). He wants to use his walker (but not his wheelchair - which he mainly just uses on the bus) and move. He wants to be independent.  In the house there isn't a lot of room for his walker, so Nickolas has be improvising, pushing a chair around the house.

He sings songs, he plays and learns and talks about what he learns.
He needs to work on his letters, so we got him a tablet. When I talked with his OT they said we need to work on his pencil grip, so we bought a big crayon for his tablet. Works great!

Campbell's school has been a great experience for him (and us) I haven't been worried about what he is doing in school, what resources he has and what support he needs.

In January we reapplied for Senior Kindergarten at Campbell's, but we also had to register him for his home school. So I got all of the papers to fill out, and put them in my bag... for a couple of weeks. I always meant to fill them out, but I had already missed the original deadline, so I kept delaying. Hoping we would get accepted into Campbell's again, and wouldn't need to register him.

Luckily we found out he's going back to Campbell's! Now I have another year of breathing room. Another year of therapy in school and school routine and learning in a small environment before he is in the 'real world'

One year before worrying about large class sizes, how he will move around the classroom and through the halls. One year to figure out and get him out of diapers, and catheterizing and EA's. Wondering and worrying about how accessible the playground is, what we need to inform the teachers, how to optimize his learning. One more year to figure out therapies and appointments and what we need and when.

School is going great! Nick is having a great time and learning so much!

Monday, February 24, 2014


The SB&H had a contest this year for the 2015 calendars. Calling all child artists!
I heard about it in January and thought how cool it would be for Nickolas to submit something.
I've been trying out different create projects for the last couple of weeks, but Nickolas has not be very interested in doing more than drawing a line or just scribbling.
So I pulled out our paints and paper, stripped the kids and let them go

Hands are fun, so we coloured everyone hands first.
Mixed up some colours, it is going well...

Then we were drawing something that was fun to do.
This was Nick's favorite thing to do when we were in Punta Cana. The sun, sky, clouds and the pool. This is the most Nick has ever drawn for me before.
I think it is a masterpiece!

Katheryn had a lot of fun drawing Easter eggs and rainbows.

We didn't finish anything in time to submit for the calendar. I didn't want to pressure Nick and he wasn't all that interested. So when we were done, I put everything flat to dry.
6 weeks of trying and 1 scenic picture by Nickolas was a success (and Katheryn loves any excuse to get out the paints).

Monday, February 17, 2014


It's time for the Winter Olympics again.
I have been very excited. But I missed being able to watch it 24-7 like four years ago. But work has been getting in the way.
Four years ago Nickolas was just 3 months old, and there was so much I worried about, that I didn't know I didn't need to worry about. And whenever I think about
I will always, always think about Alex Bilodeau and his brother. Putting things into perspective. Having a role model: his brother.

So here we are four years later and cheering on our Canadian Olympians again.
We had a medal count down on our wall. We talked about the sports we were going to watch and cheered them on!

Katheryn's favorite sport is the skeleton and curling. So we decided to practice...

Skeleton (she's smiling on the inside...)

Curling (she's pretending to hold the broom, and the ice is the curling stone.

I asked about hockey, and she says that hockey is just 'ok'.
But Nickolas really likes hockey. And he wants to go skating too.

Nickolas has been wanting to go skating. On skates. Like Katheryn (who hasn't actually skated on skates yet either). So we've been staying away from the skating ring for now.

Right now it's just enjoying the snow (which Nick likes for about 5 minutes anyways)

Tuesday, February 4, 2014

Reading and Kids Books

I like books.

I read all the time, and I'm encouraging the kids to read as well.

Katheryn has been bringing home 'borrow a book' that she reads every night. You are supposed to read it to her the first night, but we usually just give it to her and she reads it.

Nickolas has been bringing home a book too.

He needs alot of encouragement, but he can read the book too. He cries and he says can't read it, he wants me to read it. Some days he'll read it, some days he won't.
But I know that he can.

But reading isn't all about work. I read to the kids too.

Since we have an hour of time every single night we have a whole collection of books that are in our bathroom. The 24 books we opened for our book advent gave us a really good base to start from.

But 2 weeks after Christmas when we were still reading about Santa, I needed to pull out some new books. I kept the wintery ones, but put the Christmas ones back on the shelf. This is our current collection.

I pulled out our ability books to read. Books that talk about spina bifida or hydrocephalus specifically. Nickolas really likes these ones and I'll read whatever he wants me to. Our collection has grown through the Spina Bifida and Hydocephalus Association of Ontario who give books to members. And I'm always keeping an eye out for new books.

Wally the Wheelchair is about a child's wheelchair and from the perspective of the wheelchair. The wheelchair has a name and the little boy is finally able to move fast in it. I had thought that this book might help Nick like his chair more. Nope he wants us to take his wheelchair back to the hospital to give to another little boy. He is not interested in naming his chair at all.

Zoom is probably the most popular book. It's about a girl who is trying out different wheelchairs and wants the fastest and biggest one there is!

Isaac's Back Adventure is about a little boy's back and all of the things that they do together, including going to the beaching and fighting an evil monster 'lipo'

Lemon the Duck is about a duckling that needs some extra help to move around, and a group of students who work together to make that happen.
Detour Ahead of a medical book made into a children's book. It is a about a little boy with spina bifida who has a shunt malfunction and surgery. I didn't think Nick would like it, but he does. It allows us to normalize his shunt so he is just like the boy in the story (only without the malfunction)
Just Like Any Other Beagle is another medical book made into a children's story (actually both are written by nurses I think). It is just about hydrocephalus, and a doctors visit to check his shunt. But he can still do everything all the other doggies do.
There is a whole collection of kids books. And I'm always looking for more. This is a good link http://www.sbhao.on.ca/programs-services/youth/kids-resources
I'm still looking for the perfect kids book! I'd love to hear of any other recommendations