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!

Saturday, June 7, 2014


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.


  1. Oh Amanda, whatever you do, don't blame yourself! Yes, you could do much more physiotherapy with him instead of letting him watch TV or play, but where's the fun in that? He wouldn't get enough time to do the things 4 year olds like to do anymore! I often feel the guilt too, we have physio and occupational therapy exercises to do with Caitlin every day and on a good week they get done twice a week, normally once a week. If I did all those exercises every day and her other medical stuff, sure she might be a bit stronger and better with her fine motor skills & have stronger eye muscles, but she wouldn't have anytime to play, read stories or do anything she likes to do. It's all a balancing act, and I think you do a wonderful job. Just look at how happy he is!

  2. Hugs.

    At our first and (last!) SB clinic I asked about his function level. According to the therapists Logan is L1-2. Originally prenatally I was told that our son was L2/3. Then he was born and then things seemed to be different. I observed him at therapy sessions for a while trying to figure out what his function level actually was. His clinic PT seems to think that it’s around L1-2 while his EI PT feels like its L2-3 instead. Personally I think that it’s T12-L1 and that his clinic PT is not far off the mark. Ultimately all of these letters and numbers are not appropriate in describing our kiddos. Logan is far more than a mere letter and number.