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!

Tuesday, July 26, 2011

Something borrowed...

And it's shiny and pink!
The day came when we got to finally get our hands on one we could take home! (And I really don't care that it's pink, actually kinda purple. Maybe a Fuchsia colour).
I just knew that once Nick was at home, and Katheryn was there that he would take to it alot better.

This was walker trial #2. See how he's pointing to the floor, how he wants down!

When we got home I immediately put him back into it.
Katheryn saw him in the walker, crying and she said "Oh Nick, don't cry! Look funny face!" And was trying to make him laugh.

It worked for a couple of seconds, and then I let him down. I've heard from other parents that this is a normal transition period and sometimes it can take a while.
So we were working in little bursts of walker-trial times.

Katheryn also thought that the walker was a great toy for her.
See her I'm-not-listening-to-you face! How can you not laugh at this attitude! But she does know that she can't play with it.

When Katie (our infant development worker) came for our visit, Nick went back in!
And we got a smile!

And we got Nick to 'walk' to Daddy!
Nick was not too happy about this, but when he got there, he was able to get out!

But we eventually got Nick more comfortable in the walker, Katheryn making a large part of that happen.

 She thought this was great!

And Nick thought that this wasn't too bad of a thing to have too!

Even Sammie got into it! (Better watch out!)

So this was our first day of  walker borrower-ship. We have it from the preschool outreach program as a loaner until (if) someone in the program needs it. And in the meantime it stays with us until we decide what we want and what we should order for our  own.
I have a feeling that THIS is not the one, but it is perfect for what we need it for now - but I guess time (and Nick) will tell us what the right one is.

Friday, July 22, 2011

Conductive Education

Apparently I've been thinking about conductive education for a while, ever since I first heard about it in February 2010 - and blogged about it. And if I do say so myself, I feel I became famous for it! Or at least my blog was quoted by a conductive educator blogger in the UK! How weird is that - collecting information about spina bifida and conductive education (CE) and reading about your own blog!

Some things that came out of myself reading comments about my blog (and I wish the writer would have commented to me!) was that yes, I did have to pursue this type of therapy. Yes, Nick will be the first child with spina bifida who is going to this center. But now our little Ontario SB community certainly knows that there is something called conductive education.
AND I talked to the developmental pediatrician (Dr Church - who we love) about conductive education. She knew what it was, and could see the application to spina bifida. Other people I have asked (mainly PT) did not know alot about it.

We had our consult at March of Dimes yesterday.
I was very impressed by what I learned and saw and how Nick reacted.
You see Nick hates therapy. He hates having to work and being taken away from mommy and made to work. He will work, he will just protest. Very loudly.
None of that today, or at least very minimal.

At March of Dimes we saw 2 conductors who went over what they do, what Nick is doing and see what he could do.
I must admit I hate the questions - what is he doing, what is he working on, tell me about him. I get so flustered and all I can think about is what he isn't doing, and really don't want to say those things.

But let me step back.

What exactly is conductive education?
I'm going to apologize ahead of time that this kinda sounds like a school paper, but I'm trying to educate myself, family, friends and readers who might have no idea what I'm talking about (but are interested to learn).

Most of this information I'm taking from http://www.marchofdimes.ca/EN/programs/CE/Pages/WhatIsCE.aspx and the horrible wikipedia actually has some uses! http://en.wikipedia.org/wiki/Conductive_education

Conductive education is a learning process for children who have motor difficulties secondary to a neurological condition (i.e. cerebral palsy, but spina bifida also fits nicely).  They steer away from words like 'work' and 'therapy' and use concepts like 'tasks' and 'process'. Instead of working on physiotherapy, occupational therapy and speech therapy separately, Conductive Education motivates participants to develop confidence and skills in movement, speech and cognitive abilities at the same time!

It is not a one-size-fits-all, but is personalized and motivational. There is also a focus on daily living, motivation and purposeful movement. This is a learning approach to allow Nickolas to problem solve, and to learn strategies to apply to his life and get what he wants.

The key principles of CE are:
1. The child is a unified whole. Again this is the principle behind holistic care. Everything is connected
2. Targets the whole personality.
3. Activity and intention. Active participation is required, everything is intentional.
4. Continuity and consistency. The importance of reinforcement, and every situation is a learning experience

As I nurse I LOVE reading these principles! Holistic was a key concept in my nursing education!

The program we are interested in has specific focuses on:
  • Independence
  • Position changes
  • Range and activity of movement
  • Gross and fine motor control
  • Weight bearing in all positions
  • Concentration, focus, communication and problem solving

 Some other things that I really liked about what I saw/heard/read is the importance of a fun atmosphere. Motivation is considered, it is also in a group, alongside Nick's peers (WOW - kids his age who also have to work extra hard at things!).
There is game playing and activities. With the use of Rhythm (break down tasks into small, achievable segments to think about movement while using rhythm, music, repetition and counting.)

It was initially developed for children with cerebral palsy in Hungary over 50 years ago! It is not as common in North America, but seems to be gaining more notoriety. The March of Dimes has been doing conductive education for a while with kids and adults with cerebral palsy. Nick will be the first child with spina bifida.
(the 2 previous group pictures I got from http://www.steptogether.org.uk/ NOT from March of Dimes, to show how I expect the classes to go).

March of Dimes has a parent/child workshop coming up at the end of summer; August 22 - September 2 (this is 2 weeks of classes, 3 hours a day Mon-Fri). I can't wait to get Nick in that room!
Insurance and OHIP does not cover the cost. It will be about $850 for the 2 weeks. Out of pocket. But I really think Nick will get alot out of it.

Even from just watching how Nick reacted during the consultation I think this will be a good thing for Nickolas.
By the end of the class Nick was interacting with the conductors, wanting to go on the floor and work, wanting to play and keep going! It did not happen right away, Nick did have some tense moments and needed some mommy cuddles during the hour, but they were very, very patient.

To see more pictures of what they do, you can look at their latest newsletter here!
Hope you learned something and weren't bored silly!

Thursday, July 21, 2011


We are back at physiotherapy now for a couple of weeks and going strong (for another couple of weeks). Soooo not impressed with these 4-6 week sessions! But I do understand the need as there are so many kids on the waiting list. But I'm still not happy, and I'm not taking it. I'm always open and looking for new therapies and what other kids are doing and what we could be doing!

I've learned some things from our long, and upsetting break from physiotherapy. And now I know some things that I want now that we are back.

Special thanks to Katheryn for taking this cutie-pie picture!
1. Get things in writing - yes I will think that I'll remember what to do and when and how and for how long when we are in sessions. But when I'm actually at home, trying to show Kyle it just kinda slips away.
And when you are going months between sessions, it is just harder and leads to feelings that you have NO IDEA what you are doing!

2. Goals, goals, goals. Measurable, attainable with a timeline.
This seems very simple, something that I learned in school. Do you think I could ask to apply this to physiotherapy?!
Something that I learned is that you have to ask. Ask, ask and then ask again. Don't assume that therapists will do something because it is what was learned in school (for example by setting goals). Ask, demand and ask again for things in writing.

3. Think ahead. Nick is not ready for a walker yet, but hopefully he will be in a couple of months (or sooner). And even if he's not ready to take some steps, he will be. So we are thinking ahead and getting set for a walker now. Instead of waiting.

4. Be persistent. And then persistent again.
We had our physiotherapy reassessment a couple of weeks ago. I had my own goals, including wanting to get a walker, or try one out NOW. And I expressed those beliefs.
We got about 5 minutes into the assessment when I said I wanted to get him up on a walker. And then kept bringing it up. When? can we do it now? So next session right?

What did I end up with?
Written goals, measurable and with a timeline. Written things to work on. And we've tried out our first walker/gait trainer. I was pretty happy, Nick - not so much. And we have different therapists with different focuses who can work with us on different goals.

We have 2 physiotherapists.
We have Megan, through Grandview, OHIP provided. We just started using her.
She also works with Sheka who is a OT.
We also have a speech therapist (but are waiting for our reassessment in the fall).

Then we have Colleen, through Inter-Action Rehab, she is a private physio.
She works Nick hard. Very hard.
He screams through the entire session. Until he reaches mommy and then gets a minute of cuddles and back to work. But he works.
Since we started the physio the May I have seen Nick make great strides.
He is stronger, can stand longer. Has started to stand and hold with just one hand! He can weight shift. He can kneel and high-kneel, he can (finally) transition from lying to sitting! We are setting up the preparation for that walker I want to get so fast!
He is sooooo close to lifting that knee and getting over a stair/step. He actually can do it if you lift the first knee over. He gets onto his hands and knees, and will sometimes move backwards. And this  picture is on our hammock! At the beginning of the summer there was no way he would sit and be so unstable!

And even though he hates physio, I have seen him take steps. Move those feet and shift weight. And when he's really mad! He'll stamp!
Ha! Got you working!

I have a bunch of other things up my sleeve.
We have a consultation with conductive education at March of Dimes. This is a program that has worked primarily with kids (and adults) with cerebral palsy. But they have started to open up to kids with spina bifida, and attended a workshop in Michigan. I'm excited to see what it is they can do.

I'm also trying to find some info on aqua therapy. Or something to do in pools, something that will help. Nick loves the water, so he can love it and work at the same time! But I want some guidance, some goals, some exercises and something to work on!

I also found a new therapy clinic. Footprints Therapy. It has a multi-disciplinary, holistic (whole body) focus that sounds fantastic! I read about this clinic recently in another SB mommy's book, and immediately contacted them for a consultation! They have a whole bunch of different alternative therapies (and traditional) and a naturopath all at the clinic. (we already see a naturopath and that is where we get most of our natural products for various bladder and bowel issues, but this would all be together - I think).

So I have a plan, a couple of different plans, and while I don't want to overwhelm Nick with different therapies, I don't want to underwhelm him either!

Tuesday, July 19, 2011

MRI all done!

So Nick had his MRI done today.
I was pretty good with not worrying about it, until about a week ago. When I realized that general anesthesia is a bit major. I always think the whole tube down the throat thing (intubation) is automatic with general anesthesia. But that's not what they needed to do. Just some oxygen and sedation.

Nick started off pretty happy. Even if he hadn't eaten anything.
When we were leaving the house, he just kinda looked at us as if to say "hey guys, I think you are forgetting something here!"

Nick brought his knight with him!

Nick and daddy played with the coloured bubbles on the wall. While we were waiting to be called.

Then we got called into the room. Asked lots of questions - in triplocate while Nick thought that the stickers on the ceiling where great!

And he thought his new bracelet was pretty cool too!

After going through everything and what the plan was, we were able to ask our questions. And we got some more stats - 12.5 kg and 85 cm tall (which is great, because he hadn't gained wait from January - June). I was concerned that Nick was a difficult IV start. But he was going to have gas first and then the IV. The IV would give the sedation and when he woke up in the recovery room he we could come in.
They try to minimize the invasiveness, if he only needs oxygen for the 90 minute MRI great, otherwise a small tube in his mouth or a larger tube in his throat as needed. (He only needed the oxygen).

Then it was off to the cool waiting room!

Nick decided that he wanted to try out this neato machine.


Then we played at pushing the robot in and out of the machine. Lots of fun to play!

That's funny Daddy! 

Wow mommy, this is way to small for you! 

But perfect size for my knight! 

OK Mom, I got this test covered!

Nick was really, really good when we went in and he got the gas.
Kyle and I got to go in and touch him and kiss him. He didn't cry or anything. But when we asked him if he was sleepy, he shook his head! As his eyes are rolling around. Then we kissed him and left.

Had some lunch, shopped in the gift shop. And about 90 minutes later we were back.

Nick was pretty dopey. Kinda drunk. He had some problems sitting up straight and we had to make sure we were always there.
But he took some of his cup with minimal fuss.

Then wondered where this IV thing came from.
He kept trying to suck the end.

Lots of drinking, good vital signs and we were done!
I love this look! OK Mom and Dad, I am so done with this MRI business!

The car was 1 hour of very, very cranky baby!

 But once we got home he perked right up.
Ate some food

Drank his juice

And was back to his happy self in no time!

Now that we have one of these under our belt (his last/first one was at 6 weeks) I was thinking it was going to be so much worse! And he bounced back very, very quickly. But 2 people, lots of time, patience and reading material is a must! We were in and out pretty quick (6 hours door to door) and that was without any delays and we weren't bumped for any appointments!
Now we have to wait 2 weeks to get the results!

Monday, July 18, 2011

Walker try-outs!

So after making 'walker' my favorite word to use at physio therapy, we finally had a model to try out today!

We tried to ease him in a bit at first.
Shiny red like a fire truck!!

Wow, look at those wheely things!

This is kinda cool!

OK, now what does it do? 

You mean I go in it?!

Oooooh, bubbles!

AHHH! This thing moves too?!!!

I was happy to finally get him into this. It had alot more support than I thought that it would. And I can't wait to get my hands on something that we can take home and 'play' with.
We talked about the logistics of this, and I really wanted Megan to use her lunch hour or something to look for one we could take home! She said she'd work on it. I kept bombarding her with questions about when we can get one we can take home, how do we do it, when do we order our own, what is the process, can we start it now?
I do know we have to wait. I do know that we have to test a couple so we know what one will work the best with Nick, so it will last. But when she told me that it might take 2-3 months for ADP (government funding) to come through!!! I kinda wanted to stick with whatever we could get faster!!
You'd think I'd have a little more patience by now!
Next week we are trying another one.

This is a Rifton walker by Pacer. Not quite sure what that means yet, it has alot more support than I thought it would. But pretty much all of the supports (chest, crotch - oops 'pelvic') can come off to leave more of a basic frame once he's able.

Who knows what we'll actually end up with. But this feels like such a great step forward!

Hopefully Nick will tolerate the rest of the week a little better - tomorrow MRI (under general anesthetic), I'm a little nervous about that, and I'll be glad when the day is over. Thursday is a consultation at the Conductive Education at March of Dimes. Hope that goes well. And Friday is my birthday!!!
So trying out a walker is just the start of an exciting week! Then we can just sit back and relax (until our next PT on Monday)