I cane - part 2

 So they arrived.
Of course they were insanely too big. But we still tried them out.

I wasn't sure how much support Nick needs or if he would like them.
Nick talks through the whole video, and we can hear how he likes them...

 

"these are my new ones... the ones at speech therapy (physiotherapy) don't work, they don't work. Only these ones work... not the red ones, the blue ones. I like blue"

 

As he holds on with only one hand, and starts to dance!

So then we had to figure out how to adjust them to fit him.

 

So Kyle took some measurements, took the canes, cut them down, made new holes and got them fitted better.

Nick took one look at them, grabbed them and started to go!

This was about 1 minute into his first time using them like this!

 

 

I was so surprised and happy that he got moving so well that I didn't pay attention to anything else.

Look at him walk! And count and dance!

 

 

Now that we know he can move with them (alone and without adult assistance) this opens up a whole world for him.

It will not replace his walker, but it can go places the walker is too bulky to go.

It can attach to his wheelchair and go with us. So that when we are at the zoo or the park he has freedom (and off his knees)

 

 

I was so excited when we went to physiotherapy!

But when we were there he was leaning over the canes like an old man. Not very ergonomically correct. They have already had concerns about the pressure the canes will have on his wrists (which was why we had thought about the forearm crutches).

So I have to keep an eye on it.

And it is lousy that we are now done physiotherapy until school starts in September.

But it's only been a couple of days that we have had the canes.

 

I am so excited! He is so excited! Everyone is excited!

He can(e)!!!!!

I cane - part 1

I feel that it is time.
Time to challenge Nick, explore some additional options for walking.
Originally Kyle and I discussed forearm crutches, both amongst ourselves and with our physiotherapist at Grandview. And then when we had our spina bifida clinic and mentioned them we were greeted with a lot of negativity and I was thinking that maybe this wasn't a very good idea.
I had thought that forearm crutches would be more stable in the upper body for walking. But physiotherapy at Bloorview brought up the valid point that you are looking at a small bottom to balance on, as opposed to a large base of a quad cane.

So then we went back at looking at canes. Canes are not new. We used them for walking in conductive education in April 2012 through to July 2012. This is the video from Nick walking with them.

This was a year ago and I knew that Nick would be better with them this year!

In our current block of therapy, which is also our last block before moving to the school program, we have discussed a lot of things (including canes, crutches and bike) all fit into about 8 sessions, half Kyle went to and the other half I went to. It seems that every time Kyle went, they had some quad canes, and he didn't take any pictures or video, but from what Kyle told me, he found the quad points too cumbersome.

(I'm not sure why all the google pictures I can find are pink).
So I spent a lot of time searching online for some pediatric sized canes with or without the quad bottom, because I found the quad bottom at our medical supply store (except it needs a specific sized tubing).
Through physiotherapy they contacted a couple of medical supply places, but no one carried the pediatric sized canes. Looking again online they seemed to be priced about $60-80 per cane.

So we turned into a couple of do-it-yourselfers!
Kyle found some small adult quad canes for $30 each and ordered them.
They arrived this past week...

On the lakeshore path again

Today as our 4th annual Spirit Wheel Walk Run to fundraise and raise awareness about spina bifida.

Every year I want to make the next year better. Raise more money, get people out, celebrate where we are and who Nick is.

 

This year fell a little bit flat.
But the kids don't care. And really we are here to  cheer Nickolas.

As for the awareness part.
through all of the videos that I made this year, I think that awareness was raised.

We also had one of the SB&H board members, Claudio Cinapri, and his daughter Adrianna came out to cheer us on.
That was fantastic and unexpected.

So we got our 2013 picture

And then we were off!

The weather was so hot and humid. We stayed close and didn't go as far as we usually do
We also picked up a bicyclist for our walk! (Thanks Andy)

We took a quick break

And a cool down

And decided it was time to head back around.
I had worried so much that it was going to rain (and I was walking rain or shine). But it was nice and bright. And very humid (did I mention that already?)

And we arrived back at the park for our picnic.
Prime seating, nice and shady, picnic table, TONS of food and great company

And it was right beside the splash pad
It took a couple of minutes before Katheryn really got into the water, but once she did she didn't want to come out.

 We gave her some red cups to play with.
And by the end of it, all the kids playing the water had the cups!

After Nick ate, he wanted in on the action too!

I had packed for swimming in the lake (which was posted as unsafe for swimming) Yuck!
But I didn't have Nick's water shoes or his old AFOs. So he soaked everything!

So our 4th annual SWWR was a lot of fun!

Of course it is not to late to donate, if you wanted.
Nick's Cheering Squad - Ridding Family

Thanks!

14 Years and counting

The summer of 1999 seems so close and yet so far away!

But June 22, 1999 saw two people who have known each other for many years, reconnect and start that going out together.

And we didn't know it then, but what we actually did, was start our life together.



Look at those fresh young faces.

All that energy and up for a good time  

A couple of adventures

You know how some people say that they found their soul mate.
What really is a soul mate? Something lovey dovey that people say when they are in love...

It means someone who will dress up because that is what you like to do
(He might not look happy - but he was smiling on the inside)

And dress in costumes for murder mysteries, not just once but many times

And of course when the kids came along, that didn't stop us from dressing up!

We enjoy together

And we have grown together

We have become grown ups together
(or at least give the illusion of being grown up)

We started as 2 people who found each other, started a life together
And then worked on a couple of other lives

We became a family together

And learned how to be parents

We learned how to face challenges

And found that we really and truly are right where we should be, with who we should be.
Because we really do work well together.
The optimist and the realist (and we switch back and forth between these)

Because in 14 years we have had a lot of fun,
We do silly stuff
And know that it is silly and fun, and we don't care
If I get an idea in my head, I know that if I run with it, Kyle will come with me

 We can be who we are, who we are meant to be, and who we want to be.

   

And calling each other crazy is perfectly acceptable and encouraged

So 14 years has brought us a number of changes
Because these kids just out having some fun together

Turned into a life together

Our 14 year anniversary remains with our lives full of love and laughter

"I'm not a baby"

I overhead a conversation between Katheryn and Nickolas this morning.

Nick was saying "I'm not a baby, I'm a big boy"
And Katheryn is saying "I am a big girl, you are a little boy"
And there was crying and pushing and parental intervention.

I was talking to Katheryn about it afterwards. "Katheryn, why are you saying that Nick is a little boy. Both of you are the same size?"
"Well, I walk and Nick crawls, that is why he is a little boy and I'm bigger."

So this is it. A conversation.
Not the conversation because we have talked about spina bifida and what it means a lot of different times. It should not be a new concept for either of the kids.
But we have heard it about diapers and we have heard it about crawling.
I don't want Katheryn to feel that she is getting in trouble for saying it, I don't want Nick to feel that we aren't standing up for him. I want both of my kids to feel that we are just explaining something to them. Like why you don't go to school on Saturday. Why broccoli really is yummy with cheese. Or where to put the extra pirate if you run out of hands...

We've ready books, we've sat down together and talked, we've had spontaneous talks and I've answered questions, if they have them, until either kid get distracted.

I'm not sure if I'm doing it right. I'm not sure if Katheryn feels that she gets in trouble and then has to hear a lecture about Nickolas. I hope that isn't what I'm doing.

So today we sat in the bathroom - where we have a number of our conversations - while Nick is on the potty, and talked about why Nick is not a little boy, he is big just like Katheryn.

 This is how our conversation went:

A: "Katheryn, you are Nick are both the same size, why are you calling him a little boy?"
K: "Because he doesn't walk, and crawls on the floor", I pull Katheryn into my lap so she can listen to me
A: "But Nick walks with his walker. That is walking. Do you remember we talked about when Nick was born he had a boo-boo on his back"
N: "I did?!" (he says this every time we talk about it)
A: "And because he was born with the boo boo he needs extra help walking, and has his walker"
N: "Yeah!" (from the peanut gallery)
K: "OK, but I don't need help walking"
A: "No, you didn't have a boo boo on your back when you were born. But Nick did and so he has to work harder for things."
N: "I had a boo boo on my back"
A: "Yes Nick, and your boo boo was fixed"
N: "At the hopp-ital. Did you fix it?"
A: "No,  a very special doctor fixed it when you were born"
A: "Do you remember what it is called, spina bifida"
K: "OK, can I brush my teeth now?"

And that was it.
Until the next time.

I'm not sure how the conversation went, or how much will stick. Katheryn has watched the video that I made for spina bifida awareness month and saw the diagram of the baby with the lesion and asked if that is what Nickolas had when he was born. I'm not sure if it grossed her out, or helped her to understand.