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, January 14, 2015

Therapy Progression - Physiotherapy

We had a therapist meeting with all of the T's at Campbell's (OT/PT/ST). It is an opportunity for Kyle and I to get together with everyone (including social work) to discuss what has been going on through the year and plan for the future.

The meeting went well, but he has made such huge progress in all areas that I wanted to focus on each of them. One of the hugest gains is not necessarily in his ability but is in his attitude towards therapy. It also gives us different perspective from the information we receive at the spina bifida clinic at Bloorview (and it makes me miss PT Kim and her experience).

To realize how far Nick has come in physiotherapy, I wanted to take a trip down memory lane regarding where we have been in our journey.

This is a little boy who has been doing physiotherapy since he was 4 months old. And not really liking it... at all

This was the child that some physiotherapy sessions I really wondered if we were doing the right thing by pushing him so hard. And we saw progress (slowly)

But it came... when he wanted it too.
(I just realized there is about 3 months between these pictures (Feb 2011/May 2011) and he's wearing the same pants!)

We had some sessions where he screamed and cried for the entire hour! And not just once, every... single... time. And we followed through, and didn't give up. I pushed for what I thought needed to be pushed for, even if he didn't really want it.
And his walker is a prime example (July 2011)

It took a lot of trial and error to find something that worked for him (this is walker #4 that we trialed in January 2012).

And finally the one that works (April 2012)

I've continued to help to push Nick through different mobility aids. I think we went through 3 1/2 years of therapy with tears shed at every single session. His stubbornness shining through.

And I have seen Nick realize what his ability and mobility is. With this realization came a change in his level of stubbornness. His energy spent working against us changed.

I have seen Nick transition to actually wanting to do things by himself. And realizing that he can.

This summer, balance and standing has become a game with him. Nick wants to practice his balance all by himself, to show off what he can do. To want to walk and push himself. Phsyiotherapy has moved away from goals and directives that I want, to goals and directive that Nick wants. And the change has happened.

"Look at me" (July 2014)

That doesn't mean we haven't continued to push him. Looking for ways to challenge him and work within our way of life. We've gone through using canes, which we started July 2013. Nick even walked during the graduation ceremony with his quad canes last June 2014.

Which of course meant that is was time to challenge him again

And again with some crutches that I bought in August 2013. And hadn't used with any success for over a year.

But Physiotherapy at Campbell's have really listened to me this year and have been working with him with the crutches. Really working with him, or I should say he has really been working with them.

So lets go back to our meeting this week. His physiotherapist Corrie, said what a pleasure he is to work with.
What?! This is the same kid? The one we've just been talking about? No crying, or fighting or being subborn? Actually doing new things?! Wow. I would never have believed years ago that the child who just turned his face red and couldn't catch his breath from crying so hard during physio would be a pleasure to work with.

And I am so beyond happy!

With this new kid they can challenge him without the fight. And he can really show off and learn what he is capable of.
They have moved onto the crutches. (Not the best picture I know).

A fall spent working with the crutches let Nick work hard on something. And then show off what he could do.
This past Christmas concert (that I missed and couldn't get the time off for) was the opportunity to showcase how all of the kids were progressing. Not just all of the kids but Nick especially. They changed the Christmas concert around to show off Nick and his crutches!

A group of kids (I think their Wild-Wheelers group) came in during the sing along of Rudolf the Red-nosed Reindeer. Nick was the last one in during the song...
And he really showed off! My parents went to video tape everything for me. For the video I took out the background noise, and the other kids

THIS is all I need to know about how Nick is doing!
He is doing something different, working and trying. He has come a long way!

This has come at a time when physiotherapy has become a challenge for me as well. The hope that I had years ago that Nick would be a functional walker (without assistance) has disappeared as he has been identified as having L3 function by PT at Bloorview. I have written a number of times about my feelings about this label.

I have been feeling that physiotherapy has all been very negative for us for a while. And to take the time to look at how far we have been and where we are right now has helped to put everything into persepctive.

Physio at Bloorview during out clinic visits have revolved around hips and glutes and extenders and stuff like that. I try to get it, I really, really do. I have the charts and the muscle groups and the rating scales. But I really need the reports to understand it all. And while we are trying to look into the future to try to plan. And while Physiotherapy expectations play a huge role in that, it isn't what physiotherapy is about.

Physiotherapy at Campbell's has been all about hope and work and showing off how far we have come, working towards a goal.

Sunday, January 4, 2015

Recharged New Year

To end up our Christmas vacation (which started after Christmas for me) was some time away from everyone and everything.

We had a pile of movies (including all the Harry Potter movies), wii, snow and sleds and lots of warm clothes. We had no plans and the only expectation is to rest and recharge ourselves. And of course have fun

we have our party supplies for new years (along with a ton of finger foods, a bottle of wine and a big prime rib)

We had our treasure hunt, and settled into cottage life. We pulled out our games and had fun

2015 came, we counted down (as close as we could using our phones as a time keeper).

Then it was off to bed (some of us sooner than others)

 New Years Day we all got dressed up to celebrate the start of the year!

At the cottage there has been snow. So we dug out a path for Nick in his walker and all went out, until we got too cold

It wasn't actually that cold, which was nice. Katheryn lasted longer than the rest of us and made herself a snow fort.

We dried off enough wood so that we could have a fire.

And we could even roast some marshmallows

Sammie loves the snow, and I loved the sound of snow crunching (and nothing else)

The snow was one of the best parts of being up at the cottage. Don't have to drive anywhere, don't care about traffic, you shovel what you want to have fun and leave the rest.

And when you get too cold (or your parents drag you inside)... There is hot chocolate and some fun dancing to do.

Our last day was cold and windy.

We couldn't get Nick is his walker down by the lake (they wanted to go down). So Nick went down on the sled.

Once you broke up the ice along the top you had packing snow to make snowballs with!

Nick (and I) went inside earlier for our daily dose of hot chocolate. But Katheryn and Kyle continued to play outside.
I don't think either of them get cold!

Our 5 days away was a great time for the 4 of us (+grandma Ridding for one night). was really great for recharging ourselves. After the bustle of Christmas running around making sure that you see everyone and everyone has fun the time, what we needed was the time to just stop and enjoy ourselves.

Wednesday, December 31, 2014

Our Year of Family Fun!

Here is a sneak peak of some of the pictures over the last year!

New Years Fun

Looking at some fun things for us to do for new years, I found a couple of ideas on pintrest.
A year in review treasure hunt!
I went thru all of my pictures for 2014 and tried to pick out a couple of month.
Fun things that we did or funny pictures. I wrote on the back the month that the picture was from.
(I may have gone a little bit overboard)

Then I hid a bunch of them around the cottage.
Some in obvious places, some in sneaky places.

High and low.

Nick walks through the whole cottage with his walker.
The kids kept trading their photos so each of them had pictures of themselves.

It was a fun way to think about all of the things that we did all year.

I think we will do it again next year. With a couple of improvements.
I'll pick less pictures. Less pictures of the kids individually (because really it is only me know likes to see how they have grown over the year). Have pictures of actually doing things.
And I'll hide the pictures ahead of time (because we didn't get up to the cottage until New Years Eve I was trying to hide pictures while everyone was still around).