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!

Friday, April 1, 2011

Physiotherapy Woes

A core therapy in our daily life. A key member of our health care team.
Exercises and working with the goal to reach Nickolas' full potential.

And one of the things that makes me doubt and worry. Are we doing enough, can we do more, are we doing it right? (These are not new Questions). THIS is the thing that is supposed to help getting Nick mobile, getting him independent. THIS is the person who is supposed to work with us and help us reach these goals.

THIS is the person who made me so excited 2 weeks ago when she mentioned the 'w' word and helped us with exercises and activities once Nick started standing. Was it really only 6 weeks ago?
We still have more to work on. It is more than just standing, and trying to get him to cruise. Getting him stronger on his feet and more aware of how to move his legs. Strategies to help him.

 Nick hasn't sat himself up  until Tuesday, and we've been working on it for months and months and months. We still have kneeling and 4 point on the goals list. Getting more core strength. And there are probably other things on this list of things for us to work with physio that I can't even think of. Nick is juggling lots of different balls to reach his goals. Instead of just concentrating on one thing!

For example, I don't know if some of the games I play with him are actually helping or just play. When I'm changing Nick and cathing him. I get him to try to kick my hands when I hold them above him. So that he is bending his legs at the knee and not the hip and controlling his foot. Is this just a game? Nick likes it so yes. Is it helping? I have no idea? Is it hurting? No. Is there anything better I can do that would help more? I am out of bright ideas.

So not that we've established the importance of physiotherapy, we get to our woes.
Our physio block, that we had just started 6 weeks ago (and missed 2 weeks because of sickness) is done. Not only is it done, but when someone will call us 'in May or June' we will have a new physiotherapist. Because caseloads are being shuffled. So now Nick will get another new face he has to get used to. And we had just started getting some work out of him without crying!

I felt like we were just getting started, getting comfortable and then had the carpet pulled out from under us!
So now I'm looking at private physiotherapists. Because waiting until 'May or June' is just not acceptable. Nick is 16 months old (well, actually 16 1/2 months). He has had 5 PT sessions since he was a year. That is just 5 session since he got his standing frame, since he got his AFO's. 4 sessions since he started to stand on his own.
This is the therapy that is supposed to help his mobility, help him reach his potential. And here we've been doing (what feels like) nothing for the last 4 months! Either waiting for physio to start, or waiting for him to feel better, or finally getting to physio, just getting started, just starting a plan and it's over. For another 2 months!

In May he will be 18 months. So that is 5 PT sessions in 6 months!
There is NO WAY I'm letting that happen!

You tell them Nick!


  1. Ugh! I hate that things are so difficult right now - trying to get services and advocate for your little one is exhausting, frustrating, and overwhelming so much of the time. But you are smart to write about it - keep track of it - and go over it in your head - all of which will help you when trying to get the change/help you and Nick need. Praying for strength, patience, wisdom and success! I know you can do this - and of course Nick is still doing fabulous!!

  2. oh my... I jsut wrote the longest reply to you and blogger ate it! Not fair....

    Anyways, I was saying, that as hard as it is, WE really become the PT and therapist for our kids, because we are the ones with them all dy long. The sooner we learn this and adapt to it the better our kids grow. I always use therapy sessions as note taking time as to what I need to be doing at home.

    When Nat was little guy (so many moons ago!) some of what we did was: bicycle legs all. the. time. (changing, sitting, watching tv, waiting in line... all the time), kicking (yes I was dumb enough to teach and reward my son for kicking! I put a pad in front of his cr seat (we traveled a lot for appointments) and he would kick it, his sister would count hte kicks and he would get a reward for how many he did), standing in a stander... LONG before he could stand alone we had him in a stander to get used to that possition and to motivate him that it was fun! and LOTS of stretching, I think I started yoga stretches with Nat when he was 18 months old!

    Now that he is 10 daily we:
    ~do yoga and strength stretches 3x day 15 mins each time.
    ~Edurance walking (to build endurance for walking, we currently walk around 2 blocks with the dog as quickly as we can twice a day (the dog helps make us go fast!))
    ~weighted leg lifts 2x per day 50 reps each leg.
    balance training (right now his favorite is to play ping pong while standing on a balance board, but Wii games on the balance bpard rate high too)
    ~and i try to make sure he gets at least 30 mins of outside sports play dialy (current favorites are badmitton and baseball)

    I know it sounds like a lot, but the truth is it is jsut life for us. Start with one activity every dy, when that is a pattern, add the next. ANd build until you are where you need to be. I am always tweaking and combining things to get what he needs. For example, ping pong on the balance board not only works on balance, but also hand eye coordination, and is a fun sibling activity! Sports time is mixed with words problems that I make up about the gme, and stretching time is usually also flash crd time, so we do flash cards while stretching.... Just life..

    Please, always feel free to ask if you want help or ideas... I owuld like to think that some of what I have learned over the past years cn bless someone else :)

    Sorry for another mega long comment :)