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.

Physiotherapy

Physiotherapy has been a challenge for us.

Maybe it is because Nick is getting physiotherapy through school and I'm not able to be there (but I  am welcome). So I don't see the day to day changes and actually see the progress he is doing.
I just feel that we aren't doing enough
I feel that we should be working more, but I am just so tired all the time I can't think about adding something else to our plate (which is not very full to begin with).
I've been looking at some more supplemental physiotherapy to go with the school program, but when I mentioned it to our PT at Bloorview she told me I should be looking at recreational activities instead.
It kind of seemed odd to me. Like she was saying, don't look at doing any more PT, it won't help, just keep him active. Like they are giving up on what abilities he can continue to gain.

I've been looking at recreation activities to sign Nick up for. In my head I want him to do something like soccer where he can practice kicking and walking in his walker. But I can't find it. Grandview doesn't have recreational activities for his age group (other than swimming).
I'm sure there must be something out there.
But I want it to be easy to find and not cost a million dollars, and fit into our schedules.

We have Nick signed up for a bunch of camps in the beginning of the summer (before his surgery) and I'm really excited to see what he will do with the conductive education camp.
And part of me is still waiting for that miracle.
That step on his own.

Physiotherapy has been the tool that we have been using for him to gain strength and ability and awareness of what his potential is. And it has been hard, and there has been a lot of fighting and crying. But we keep going so that for one hour a week I know he is working hard.
I know it isn't enough. And maybe if I hd pushed for more intensive physiotherapy earlier he would be able to take that step.
Maybe he would be strong enough
Maybe I failed him

As his mother aren't I supposed to provide him with all of the oppurtunities available to him
Work every single day, concentrated work.
Or has my laziness and spending time just sitting and watching tv cost him the opportunity to gain strength to walk?

Nickolas does not function at the level we expected. His lesion when we were pregnant was L5-S1, on actal delivery the lesion (hole) was at S1. Even his sensory (that I've been able to try out) is S1. But as he gets older and we learn his muscle stegth he isn't at S1, or L5 or even L4. L3.

At Bloorview this month the PT went through the information with me and what it meant. Being able to move muscles against gravity is what is functional, not just being able to move that muscle. And check marks down the side of the paper that labeled him at L3 function.

It still hurts. And I really try for it not to hurt any more. And maybe one day it won't. But I still remember the lists we looked at when I was pregnant. And looking at L5 and S1 and what that will mean for wheelchair and walker and community and home.

I've been looking at wheelchair ramps everywhere we go now. And thinking of Nick as an adult and how inaccessible to world could be, and how hard he will have to work to be able to ... just be able. And then looking at our own house, and realizing how inaccessible it will be once he is older as well.
You can't move a walker through the house functionally. Yes he can go up and down the hall and turn around but it's a lot of work. And we don't have ramps outside the house.

How can he live like that? Why does it have to be like this?

And I know that I am rambing, and I'm ending off with a different focus than what I started with. But physiotherapy is the tool that we have been using to give Nickolas the ability to gain function. But as he gets older and older I am worried he is reaching his functional potential and it hurts me.

I've got your number!

Actually you don't.

It's taken me a while to write about this. (I think I have written about it in my own journal, but not really here. I had to be ready).
It's all about the letters and numbers.

For those not in the spina bifida world there are actually 2 sets of numbers and letters to work with (actually maybe 4), which represent that lesion (where the spine was damaged) or level. One is motor ability and the other is sensory ability. Then there is actual level and functional level. Am I confusing you yet?

I talk a little about it on my 'learning blog' here.

OK back to the basics: The spine is made up of vertebrae (bones) that have letters and numbers. From the top down we have 8 cervical vertebrae (C1-C8), 12 thoracic vertebrae (T1-T12), 5 lumbar vertebrae (L1-L5) and 5 sacral (S1-S5).
When we got Nick's diagnosis the best 'level' we were told was lower lumbar/upper sacral. When he was born we were told his lesion was at S1. Bonus!

But he doesn't actually function at a 'S1' level. I've known that for a long time. But I was figuring it would be something like L5. (One level up, no big deal). But then Nick has been very complacent when we try to get him to do things that we (I) believe he has the ability to do.

Everyone time I ask about what someone estimates Nick's level to be, it actually takes alot for me to ask. Because I'm afraid of what they will tell me. Even though I know that I shouldn't. I know that numbers are numbers - and nobody has Nick's number, but himself.

Nick's sensory level is pretty good. He feels all the way up his calf, but not his thigh.

His functional level is a little tricky. And when I ask someone to give me a number and letter, they always tell me that it's their best guess. That it will take time to determine. This past spina bifida clinic I asked again what they think his functional level is. Or their 'best guess'.
She did some tests and tried to get him to do some stuff. Much to Nick's dismay.
I asked about how I could do some tests at home. It was suggested I look at some different resources - but they didn't have what I wanted.
What I wanted was a simple test to give me a letter and a number.
What I found is that it is not that easy.

Oh, did I mention that she told me L3!
L3!!!
I was in a funk for days. All I could think of was L, L, L, L, L (OK I already knew that letter) but 3! 3 is just so much higher than I thought. That is actually 4 levels higher than I thought.
Well, I'm not to take that!

So online I went.
I looked at a bunch of articles that talked about flexion and extension and abduction/adduction. Then I had to look up what all of those meant, and then I had to look up pictures.

Abduction

Adduction

 Knee flexion

 Knee extension

Hip flexion

It also helps me to decipher what PT says when they talk about quadriceps, hamstrings ect and what exactly that means!

So what did I do when I was trying to learn about all of this?

I wrote a chart. And this is what I learned:

The reason it is so hard to figure out a level is that different muscles and abilities are from multiple nerves. Hmm. Not so easy!

L1, L2, L3, L4 - thigh flexion

L2, L3, L4 - thigh adduction

L4, L5, S1 - thigh abduction

L5, S1, S2 - extension of leg at hip (gluteus maximus)

L2, L3, L4 - extension of leg at knee (quadriceps)

L4, L5, S1, S2 - flexion of leg at knee (hamstrings)

L4, L5, S1 - dorsiflexion of foot

L4, L5, S1 - extension of toes

L5, S1, S2 - plantar flexion of foot

L5, S1, S2 - flexion of toes

 So now that I know a little about 'physio talk'.
 So lets just say that I'm not taking L3 lying down.
And hopefully I will eventually learn that Nick is too young still to give a number too. And even if that number is L3 (which I don't think it is), it doesn't matter. It was just a bit of a shock when I expected L5 (maybe L4). And I'm going to stop taking about numbers and letters now.