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.

Last day of school

Today is Nick’s last day of school.

School has been good this year. I was worried about it, about giving up control and trusting someone else to do it.
I spent 4 years being in charge of everything, spina bifida related especially, and then you send your child off to school and give some of that control over. School involves a lot more than just putting your kid on a bus and waving good-bye.

There were all kinds of considerations and worries that I had in September. The bus was my first challenge to get over. Your child must be able to get up and down the stairs independently to ride the bus without a wheelchair. So Nick took the wheelchair every day (even days I forgot it in my car after a night shift and I have to take him in myself).
In the end his bus driver was amazing and I wasn't worried at all.

Then is the question about mobility in the school. How will your child move around the school? Is the classroom accessible? Is there enough space for a walker or wheelchair to move around? Now the bathroom question. Catheterizing, who and when and how are they trained to do it.
 

Again, Campbell's is built for kids with walkers (and more) and has all the space needed.

There is the social aspect of schooling, including the fact that your child might be the only one with diapers. Can he keep up with his peers? Will his classmates be accepting? Will you child be social or shy? What/who assistants does Nick need to have in the classroom? And therapy. Nick continues to have his 3 therapies (OT, PT, ST).
The social part we had more trouble with, especially around the diaper issues.

In the end Nick had 3 really great friends that he talked about all the time.

And today is the big day.
Graduation Day

 

Because not every child is returning in the next school year. The last day of school is a graduation for all of the kids.

 

And Nick walked all the way up with his canes for his certificate

 

 

 

Nickolas was very proud of himself!

And even though he is returning next year it was great to see him so excited about graduating into SK.

 

 

He said good-bye to all of his teachers and his friends.

 

 

But it was hard that he didn't really get that he might never see his 3 best friends again. But next year will bring new best friends, and grade 1 will brings friends in his home school.

We were teasing Katheryn that since Nick finished on the Thursday, and she finishes tomorrow on the Friday, that they are both SK's now.

She didn't think it was as funny as Kyle and I did.

 

Now it is getting ready for all of our fun and excitement over the summer

I cane - part 2

 So they arrived.
Of course they were insanely too big. But we still tried them out.

I wasn't sure how much support Nick needs or if he would like them.
Nick talks through the whole video, and we can hear how he likes them...

 

"these are my new ones... the ones at speech therapy (physiotherapy) don't work, they don't work. Only these ones work... not the red ones, the blue ones. I like blue"

 

As he holds on with only one hand, and starts to dance!

So then we had to figure out how to adjust them to fit him.

 

So Kyle took some measurements, took the canes, cut them down, made new holes and got them fitted better.

Nick took one look at them, grabbed them and started to go!

This was about 1 minute into his first time using them like this!

 

 

I was so surprised and happy that he got moving so well that I didn't pay attention to anything else.

Look at him walk! And count and dance!

 

 

Now that we know he can move with them (alone and without adult assistance) this opens up a whole world for him.

It will not replace his walker, but it can go places the walker is too bulky to go.

It can attach to his wheelchair and go with us. So that when we are at the zoo or the park he has freedom (and off his knees)

 

 

I was so excited when we went to physiotherapy!

But when we were there he was leaning over the canes like an old man. Not very ergonomically correct. They have already had concerns about the pressure the canes will have on his wrists (which was why we had thought about the forearm crutches).

So I have to keep an eye on it.

And it is lousy that we are now done physiotherapy until school starts in September.

But it's only been a couple of days that we have had the canes.

 

I am so excited! He is so excited! Everyone is excited!

He can(e)!!!!!

I cane - part 1

I feel that it is time.
Time to challenge Nick, explore some additional options for walking.
Originally Kyle and I discussed forearm crutches, both amongst ourselves and with our physiotherapist at Grandview. And then when we had our spina bifida clinic and mentioned them we were greeted with a lot of negativity and I was thinking that maybe this wasn't a very good idea.
I had thought that forearm crutches would be more stable in the upper body for walking. But physiotherapy at Bloorview brought up the valid point that you are looking at a small bottom to balance on, as opposed to a large base of a quad cane.

So then we went back at looking at canes. Canes are not new. We used them for walking in conductive education in April 2012 through to July 2012. This is the video from Nick walking with them.

This was a year ago and I knew that Nick would be better with them this year!

In our current block of therapy, which is also our last block before moving to the school program, we have discussed a lot of things (including canes, crutches and bike) all fit into about 8 sessions, half Kyle went to and the other half I went to. It seems that every time Kyle went, they had some quad canes, and he didn't take any pictures or video, but from what Kyle told me, he found the quad points too cumbersome.

(I'm not sure why all the google pictures I can find are pink).
So I spent a lot of time searching online for some pediatric sized canes with or without the quad bottom, because I found the quad bottom at our medical supply store (except it needs a specific sized tubing).
Through physiotherapy they contacted a couple of medical supply places, but no one carried the pediatric sized canes. Looking again online they seemed to be priced about $60-80 per cane.

So we turned into a couple of do-it-yourselfers!
Kyle found some small adult quad canes for $30 each and ordered them.
They arrived this past week...

What we are doing...

We have reached the end of our conductive education semester.

And we have learned alot being one-on-one with Abagail

Nickolas has been learning that he has the ability to use the walker for long distances (he just needs some extra encouragement)

We've been working on some sensory stuff, to get Nickolas to understand what it feels like - for him - when he has something under his feet.
I love watching Nickolas do this.

Nickolas is rolling a roll of play dough back and forth, feeling what it feels like and we are encouraging him to feel it with his toes (he gets flicker of movement in his toes, and more directed movement in his big toe - especially the right side)
Sometimes when we want him to move his foot - he grabs his leg with his hands and shakes his leg and foot. He thinks he is being funny.

There is lots of stuff that we have been working on.
Nick has been rope - walking. And doing well
I really believe that this is what has made Nickolas much more independent with his walking around furniture. If he can walk holding some moving ropes, then he can walk holding onto a couch, or reach between stuff!

We've tried something new in the last weeks. Climbing a ladder!

And Nick is definitely a hat lover! Incentive is the key, and fun
Construction boy!

Every construction worker has some tools
This what I love about conductive education - Nickolas is working on the little things like OT tasks, but he doesn't know that he is. He thinks he is having fun

Even doing his own bending and cleaning up - without encouragement.
Just because he wants to.

We have lots of transition walking with the canes.

I need to find where to get these for a good price. Nick likes walking with them - they give him freedom he can't get with a bulky walker. But we can borrow them for as long as he is in conductive education, but need to give them up when he is done.

Fun, functional, working and wonder.
Cleaning a mirror!
If only I can get him to do this at home...

This is another area that Nickolas has excelled at.
Confidence in cruising and reaching to get to where he wants, and knows, he can go.

Balance and confidence. Balance and confidence. Balance and confidence.
That is really what we have been spending the last couple of months working on. (Have I said this enough yet)
Standing and balancing and then lets just change something and make him work harder (in this case spreading his knees so he isn't pushing them together).

I think this happy boy is glad that we are doing so much conductive education too!

(At the end of last semester he still hated sitting on the peanut ball)

We are going to miss you Abigail!

No rest...

Why stay comfortable in one way of walking, when we can keep challenging you!

 At conductive education this week Abigail decided it was time for a challenge.

Not only did Nickolas accept this challenge. He went from his walker, tried these ‘sticks’ and thought it was great!

It helps to challenge him to keep his balance more, and coordinate his movements to walk.

Even at the end of our day he asked to try them again.

 I am amazed at how far Nickolas has come in such a short time.

Nickolas has realized that he has the ability to do what he wants on his own.

He has realized that he has independence!!!

(I have a video, but it won't upload)