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, March 28, 2016

Zoo fun!

We hadn't been to the zoo for a while, and our membership was running out. So the kids and I decided to go and visit the zoo!

Our original plan was the visit all of the new babies (panda bears, polar bears, white lions and rhino). But, that seemed to have been all of the other families plan as well.

So we went to visit some of the other animals

The kids liked the crocodile (or was it an alligator)

They wanted to get a close-up view

Katheryn liked running around and climbing on everything, even if we didn't see a lot of animals

To end the day we got to ride on the carousel. Nick wanted to try one of the up and down rides. But he didn't like it. The next time we went around he went in the turtle that is the wheelchair accessible one.

Another fun day out!

Sunday, March 27, 2016

Easter Fun

It is Easter weekend! Which meant we got to visit a lot of family and look for a lot of Easter Eggs!

The kids got some giant crackers that they got to open before dinner

Nick did all of his Easter egg hunting with his crutches. Which gave him lots of flexibility in small spaces.

With the difference in ages and abilities we have been hiding 4 eggs in each place. This means that the super-fast girls don't collect all of the eggs before the boys get a chance.

Afterwards everyone went through their eggs.

The next day we went to Grandma and Papa Bartley's house. Nick walked the whole way there!

And on Sunday morning we had lots of time for relaxing and looking at the what the Easter Bunny brought

Umm. When did he get so tall!

It was a fun Easter, with lots of family and lots of smiles!

Tuesday, March 22, 2016

Physio with a partner

Nick had a partner this week for physiotherapy.
She got to help him focus his muscles when doing some of his leg exercises

And working on his core, by balancing on one hand or another. It is much more fun to give your sisters high fives

Katheryn was very interested in helping with everything. And Nick was happy that she was there too

There was lots of laughing and fun times. Katheryn got to feel that she was involved. And Lindsay, our PT said Katheryn reminded her of times when she was at Grandview with a sibling.

Tuesday, March 15, 2016

Teddy Bear... or Minion/Monkey Clinic

Nick brought his minion, Bob, to be checked out.

Bob broke a bone, so he needed Nick to put a cast on him

But he needed to have surgery.
But that was OK, Nick knew just what Bob needed to help to relax

They got to check bloodpressure and take temperatures.
Monkey and Bob got bloodwork taken and an IV inserted (all latex free)

Nick says that the best part of Teddy Bear Clinic is the surgery (and he wrote it all himself)

These kids give the Teddy Bear Clinic a couple of huge smiles!

Saturday, March 12, 2016

Martial Arts!

Katheryn started martial arts last fall and has been having so much fun with it!

Katheryn has been getting stronger and more confident.
She was very happy that today she got to test for her yellow belt!

Nailed it!

Wednesday, March 9, 2016


We started another block of physiotherapy last month.
I wanted to work on gaining strength and confidence in his crutches as well as improving his independent walking. (He took those first couple of independent steps in November, but hasn't been able to take any more since the end of December).

So we have been working on some leg strengthening exercises with weights.
Kicking forward

And working on the back of his leg muscles, kicking backwards.
It is hard work for him, and you can tell he is twisting and turning and try to cheat. But he still does it

And we did some walking on the treadmill. Which he liked doing, but was afraid of at first.

All of this working on his legs makes him very tired.
The first week we did physio he was full of attitude and didn't want to do anything but play. But over the last couple of weeks he has fallen into the routine and working hard.

Nick has been walking around Grandview with his crutches and we have timed him so that we can get an idea of how he is improving.

This has been our first physiotherapy specific session since he left Campbell's. I am glad that he has these specific sessions to work on specific skills. And I can see him getting stronger!

I have talked to Lindsay, our physio about what we learned last week about the cyst on Nick's spine. It is never very far from  my mind. Having these sessions will help to measure a change over time as well.

Tuesday, March 8, 2016

Teddy Bear Clinic Interview

It is March again, which means that it is almost time for the Teddy Bear Clinic at my hospital. We were invited to talk about our experiences in a segment on Rogers TV.

Unfortunately I don't have a clip of it, and we don't have Rogers (something I was very happy that the kids did not mention while we were there)

I let Katheryn and Nick stay home from school for the morning, so that each of them could bring their experience and their toy and be on a television set.
Katheryn wanted to bring her monkey, and Nick wanted to bring Bob, his minion.

The interview went well. The kids were excited and talk about their favorite part of the Teddy Bear clinic. Katheryn liked the cast, and Nick liked the surgery part. We could see in a tv what was being taped, and Katheryn kept looking at it and making faces.

Unfortunately I haven't even seen what it looked like. But they had fun, so really that is the important stuff. And we go the clinic next week

Thursday, March 3, 2016

Girls Night Out

I thought that Katheryn was old enough share a passion of mine. Musical Theatre.
I love going to the theatre and the more musical the better.

So for Christmas I got Katheryn tickets to see Beauty and the Beast!
She had to wait 2 1/2 months, but finally the night came
Katheryn was very, very excited for a girls night out

Katheryn really wanted to wear her a Belle dress. Her old dress was waay too short for her. So when Nick and I went to the Disney store earlier in the week for his appointment, we got Katheryn her beautiful Belle dress. (And I wore gold to match her)

Katheryn was excited to be going downtown for fun as well. The streets were all still covered in snow and slush, but she was really good with holding her dress up and not getting it dirty at all.

We went down with a friend from work and went out for dinner. Katheryn loved the mustache glasses!

And what is your first trip to live theatre without some kind of memorabilia. So Katheryn got a Belle crown to match her dress.

I was actually surprised that she was the only kid I saw who was dressed like a princess. She got lots and lots of compliments.

We got to sit waaay in the back of the theatre. She couldn't wear her crown (of course) at the theatre to prevent the couple of people behind us from seeing, and she understood when I explained it like that (if only adults understood that as well). At first I was telling Katheryn to sit back and sit still. But then I realized there were lots of kids at the show, it was a Disney musical of course, and the seats were deep.

She had a great time at the theatre and can't wait to go to another show!
And it was really nice to have some quality girls time with Katheryn and me

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).