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, September 9, 2016

School Letter to student/parents

For the last 3 years I've been making pamphlets to send to school with Nick. Usually it has been to his teachers and last year I made one for the students as well. To help answer some questions and normalize the equipment Nick uses.

When I was looking over Nick's pamphlet for this year I realized that it has a bunch of information that is helpful for the teachers, but not really stuff his classmates need to know. So instead we wrote a letter, with some pictures.

Hi classmate,
My name is Nickolas, you can also call me “Nick” and I am in your class with Ms L.
I am 6 years old and in Grade 2. I love playing Avengers and Star Wars and may recruit you into a game! My favorite characters are Captain America and Darth Vader. I love playing at recess and my favorite subject is gym. I may be quiet at first, but once we get to know each other I like playing different games. I like wrestling and playing sledge hockey this summer!

I was also born with spina bifida and hydrocephalus. But that hasn’t stopped me!
When I was born I had a hole in my back. This is called spina bifida. My spine was open and the nerves in my back were damaged. These nerves can’t tell my body how to move and what I feel.

I had surgery to close the hole when I was 1 day old. Even though my back is fixed (and I have a large scar) the nerves to my legs and feet are still damaged. I can’t feel the back of my legs or the bottom of my feet very well and have weak muscles in my legs.
I also have hydrocephalus which means I have extra water (fluid) in my brain. I have a tube, called a shunt, which takes the water from my brain and puts it in my belly. You can’t see this tube, but I have a cool scar and a bump in my hair, but you can hardly see it. I also have a latex allergy, which means that I can’t be around any latex balloons or I can get sick.
You may have noticed that I use extra equipment to help me move around the school. I wear braces on my legs to support my ankles. They have Avengers on them! I also use blue Crutches, I need extra space so that I can put the crutches on the ground. I can walk and even run with my crutches. Please don’t try to squeeze around me, because I may lose my balance and fall.

I also use a red Walker that I pull behind me. Please don’t push or pull at the walker because I might fall. I can run and play at recess and gym class with my walker. I also use an orange Wheelchair that I use on class trips and on my bus. I can push myself, but if you want to help push me, please ask me first.
I have an older sister named Katheryn who is in Grade 3 at XX. I also have 2 big black dogs named Rory and Chuva. They are very friendly. My parents are named Amanda and Kyle and my mom writes a blog about spina bifida and our family.

I am excited to meet new classmates and spend the year with you!
From Nickolas and Family

Nick has the same teacher as last year, but only 2 students are the same as last year. He is in another split class, this time being the older grade.
I think it will be a good year for him!

Wednesday, September 7, 2016

First Day of School

The summer went by fast and furious!
And we did lots on our summer bucket list
And now it is time for back to school!
Nick is so nervous about going back to school. He is starting grade 2 and has the same teacher as last year. He was very excited to wear his Captain America shirt!

Katheryn, on the other hand, is very excited to go back to school. To learn, play with her friends, meet her new teacher. Katheryn got a new dress for school, but she's worn it twice already and told everyone it was her back-to-school dress

Grade 2 and 3!
How did they get so big!

The kids were very good with pictures before school starts. And I got 3 pictures in 3 shots

Wednesday, August 10, 2016

Bowling with cousins

Nothing like a spur of the moment bowling night!
The boys tried using the force to get more points

Gwenny wanted to help

And Jamie had a blocker

Great time out with the cousins!

Tuesday, August 2, 2016

Kushog Family Reunion

We had our annual family reunion at Kushog Lake.
It was a smaller group than previous years, but we still had fun!
Of course the first thing everyone wants to do is go in the lake
This has a big and deep lake so Katheryn was going to be able to try out all of her swim gear!
(Even though she doesn't look very happy, it is a "not another picture mom!" look)

Nick is finally cleared for some swimming, so he was all set to go as well!

The water was beautiful and they would spend all day and night in the water
Instead they swam back and forth between our neighbor and our dock

Nick found the flippers to get in the way more than help. So we took off his braces and flippers and he could move around much better

We were camping this year. The kids were really excited to be sleeping in a tent.

I had thought we would all share the big sleeping bag, but Katheryn wanted to be in her own space.
I hadn't brought an air mattress for her, so we ended up with a lounge cushion.

In the morning we had a tent-crasher! Jeremy liked camping
And Katheryn wanted to sleep with Nick and I the second night

Katheryn and I also spent some time Pokémon hunting

Rory found her lounging spot

We went first got to the cottage, Rory liked being on the dock. My father jumped into the lake and either she jumped after him, or she was knocked in. But she ended up in the deep water, and she wasn't happy about it.
She did swim back to shore.
Katheryn has been swimming so great with her life jacket and flippers that I wanted to see what she could do without the support of the life jacket

She needed ALOT of encouragement

But she did it!
I never had any doubt!
That girl is like a fish!

Once she made it to the dock and she was confident that she could do this. She was off! Swimming all over the place.
I think next year we will be swimming across the lake together

Nick did lots and lots of walking with only his AFOs, but it would tire him out a bit. So he did resting too

At night we had marshmallows and told stories around the campfire

And we played cards
Katheryn learned how to play Rummy with Laura and I.
And she WON!

Of course she wanted to play with us the next day
(She may not want to admit it, but she is a lot like me)

Jamie and the kids had a build-your-own lightsaber project

After 4 days and 3 nights it was time to go.
I had to work again Tuesday night, so we got to have a quick dip in the beautiful lake first

No one wanted to get out

When we started packing the car, Rory was all ready to go

I wish we could have spent more time this year. It doesn't look like we will be back this summer

Friday, July 29, 2016

More walking

Nothing like a little challenge.
When we were at Toronto Island I wanted to challenge Nick and see what he would do if I took off the 'K' from his KAFOs. And then of course he decided to challenge himself further by walking over cobblestones
My thought was since the testing and surgery came from needing more bracing, now that he has had the surgery and is/has recovered so well, we should see what he can do with less support.
When we got home I took a video of him on some stable ground to see how he is.

His knees are more wobbling. But they have been supported for a year.
But he is able to do it.
And it is a balance between bracing him too much and compromising muscles getting stronger, and not bracing enough and causing injury or incorrect (cheating) form. What we want is enough support to allow him to be functional and not waste his energy and strength.