Physiotherapy woes and wonders

You know when you have a blog post just waiting to burst forward. You write the whole thing in your head and know exactly what you are going to say.
I had this post all ready.
All about our physiotherapy woes.
I am currently pissed off at our local children's centre. Just like I was pissed off last year and other times. Because I feel we are being pushed around and not getting the care that we need.
Why?
Because we are still waiting to be picked up (again) from Grandview
Becase we had 2 blocks of therapy last year.
2 blocks!!! In 1 year.
That is 2 blocks of 7 weeks, and another 3 sessions to adjust the walker - so 17 sessions of physio in 52 weeks!

And this is what we are supposed to use to see that Nickolas is reaching his potential and getting the care he needs.

This is actually our government therapy. We have used insurance (a whole $500 in insurance - which we reached pretty quickly) to top up Nick's physio. We actually had 4 different physiotherapists working with Nickolas and I this past year. Melissa - who we saw Feb-March (block 1); Colleen that we see privately starting in May, Megan who we started with in July-August (block 2) and worked with the walker with us through the fall until she went off on maternity leave, and Doreen, we saw in the fall privately and who is also a osteopath and physiotherapist.
If you are counting (which I am) we paid privately for another 13 sessions. On top of our conductive education (not traditional physiotherapy - but we get working) So that's another 20 sessions.

At the spina bifida clinic we have even more physiotherapists! We have Kim our original physiotherapist, who has been off for 6 months and came back in October, and another PT who we never did therapy with, but see at baby group and clinic. She was the one who said that Nick functions at a L3 level.

Sounds great for continuing care.
Especially for a child that does not warm up to therapy very well.
In fact, he usually screams his way through therapy sessions. I've blogged about it before.
A child who has so much potential, but doesn't want to show it until he is ready.

We have not been recreating the wheel at every session.
When we were all of a sudden dumped by PT in March I was floundering. We were not left with a plan, we didn't have goals, we didn't even have any dates about when we would get picked up again. Just sometime in May (it was really July). I didn't want that to happen again
We started private physio in May. Nick screamed and cried and carried on through the whole thing - but he worked. And we had a plan, we had goals and written objectives.

In July I had a goal. I had an objective. I wanted a walker. I didn't care what I had to do, or what Nick had to do to get us a walker. But I wanted one. So once we met with Megan in July we started working on getting him a walker.
And we had one to take home on one of our last physio sessions at the end of July. We have since gone back a couple of times just for different walker things. I took off all of the supports at the end of August because I felt he didn't need them. And in September we changed out this walker for another one I purchased, and then for another loaner in October.
OK we might have a little bit of walker overload.

I just feel that we are being tossed aside and getting sub-standard, nonconsistent, noncontinuous care. And I don't really know what to do about it.

Well Kim to the rescue!
At baby group this month Kim offered to pick us up again for a block!
I am so excited. Kim is great, she is super experienced with spina bifida and Nick does know her. He needs a little bit of a warming up period. I am so excited about this. Finally to have weekly physiotherapy again (after 6 months) instead of a week here and there, espeically because we are on a break from our conductive education.
So we start again on lucky Friday the 13th! And we'll be moving forward, with the right equipment and support!

Changes

Changes are coming. And they are supposed to be good.
We got a call yesterday saying that our name had come up for the wait list at Grandview (our local kids rehab centre). This is 15 minutes away from us, as opposed to the 1 - 1.5 hour drive to Bloorview where the spina bifida clinic is. This is the drive that I have been making at least every week to go to weekly physio appointments.

It's worth it, I really like Kim, our physio (I think I might have written about her before). And yesterday we were even talking about AFO's [ankle foot orthodics - braces for the ankle and foot] and a standing frame.  

Kim and I have discussed that there are various beliefs about a standing frame. Either waiting until children are able to stand, or helping them to stand to give them the feeling of being upright and the social connotations associated with being able to 'stand'. I like the idea of introducing a standing frame earlier so that Nickolas is not always lying down, being held or sitting. We discussed starting the process of measuring for AFO's before I go back to work in 2 months.

I am worried that this change, being called up from our 8 month waiting list is now putting this in jeopardy. We were getting things started, from my perspective giving Nickolas some independence and now this is being threatened. And I don't like it!

At the same time I recognize that maybe it isn't being threatened. Maybe the PT's at Grandview will be on the same page. Maybe transition will be easy and seamless.

We go on Monday to see PT [physiotherapy] and OT [occupational therapy] at Grandview. So I guess I have to wait until then to see how things will progress.

In the meantime, this is the newest thing that Nickolas has done.

It might not seem like a big thing, but he is rolling over to something and then reaching to get a toy - a big deal! And he's starting to attempt to investigate obstacles.

Oh yeah, and today was a better day. {if you have no idea what I'm talking about - see yesterday's post}