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!

Tuesday, March 1, 2016

Neurosurgery Update

We had our neurosurgery appointment.
This was the review the results from the MRI appointment.
It was an early appointment, which is good, considering we are getting a snow storm


I had thought that everything was ok. Nick has been moving great with his crutches and has really been improving with these. The concern I had in August, which prompted the MRI, was still there, as he continued to need the increased bracing.
But he has gotten stronger. So what I expected was that the MRI would show tethered cord and even though he needed increased bracing, his symptoms didn't really seem to be getting worse.
So that is what I expected. And that part did happen.

But something else unexpected was also on the MRI. Nick has a cyst on his spine. Dr Rutka asked some questions about how his function was, but all I could think of was how well he is doing with his crutches. I couldn't think of any questions at all.
We are going to watch for signs of loss of function and follow up again in 6 months.
He said often treatment is to drain the cyst, but it could redevelop.
Because we are not there yet, we didn't really talk about treatment.
It was actually an extremely quick appointment


We didn't want to get stuck in the snow storm (which had already started by the time we left) so after a quick visit to the Disney Store we were back on our way to Union Station.
Nick may have had a tiring day


After a couple of mishaps, and missing one train because the elevator wasn't working. And having 4 different GO Train employees working to get us up onto track level we were on our way home.

Nick and I decided to treat ourselves to some lunch. After being in the wheelchair for the entire morning Nick wanted to use his crutches. (While my mind is still racing about the cyst)


Nick was very cheerful and enjoying his day off.
And he liked showing off his SB&H shirt. (Because we are all Strong, and we are all Brave and we are all Human)


He wanted to take some pictures of me as well


I haven't posted about this for a while. Kind of the thinking that if I don't write about it, it will go away and not be true. But then I look at Nick and see the boy in front of me.
But lesson learned. No more going to appointments to talk about test results by myself. You think I would have learned that lesson (when I was downtown all by myself when we got the spina bifida diagnosis).

Monday, February 29, 2016

Beaver Buggies

It was Beaver Buggy time again!
Nick has really been enjoying Beavers this year


Nick did the whole night with his crutches!
He has been getting so much more comfortable with them. And there was a lot of kids around. He was worried about being bumped into and falling, but he was able to stay on his feet the whole night


And he was all over the place


Nick was also much more involved in the crafts they had than he was last year.


He made a star wars car with a paperclip and some thimble wheels


After the crafts it was time to race
Nicks Buggy is the brown with the blue car, was all ready for the races!


It was also the fastest car!
Nick won ever single race he was in!


It was another fun night at Beavers!


Sunday, February 28, 2016

Snow Weekend

We had a family weekend at the cottage with lots of snow!
Rory was in her prime


There was lots of sledding

And rolling, down the hill


And fun inside in the warmth when we all got too cold



It was perfect snow-fort snow. Which the kids thought was the coolest thing ever!


It was the perfect place for launching secret attacks!


And of course some night time fun as well




Wednesday, February 24, 2016

Post-Botox

It is about a week after the botox and deflux and we are very happy with it!
No pain or infection afterwards, which was one of my worries.
And today we got to do something that we have never done before

Real underwear. No pad, no leaking.
Hopefully it will last!







Sunday, February 21, 2016

Face Painting

Katheryn got a face painting book and was excited to try it out!
Nick was a very willing participant



Katheryn took her work very seriously



Now we are ready for HULK to Smash!