Speaking about Our Life

Growing up I never thought I would enjoy talking to a classroom full of people. I hated public speaking, and in elementary school I would do anything not to have to talk in class. It didn’t really get better in high school or through my various degrees.

But put me in front of a class and let me talk about our life with spina bifida. I don’t even need my notes! Or PowerPoint slide full of informational and very cute pictures.

I’m lucky that I have this opportunity. (I hope everyone knows Milo - my ninja seal)

My mother works for Centennial College in the RPN program (where I have also had a placement – and where I might eventually want to work when I’m sick of hospital life). But through this connection I have been offered various opportunities to talk to classes about spina bifida. I’ve talked to PSW and RPN classes as well as OT/PT assistant classes.

And I love it!

I’d do one (or two) every semester if I could. I’d talk to different schools, different classes. Anyone who is interested.

I also ask if anyone has heard about spina bifida before, or knows someone who has it. I say it is the leading permanent birth defect in North America. I say that it is what folic acid helps to prevent (very quickly followed by not 100%, but it helps to decrease).

I start of talking about our D-day, how we were told the diagnosis. Then Nick’s birth. I talk about what spina bifida is, as well as hydrocephalus, Chiari, all those other pesky diagnoses. I talk about the surgeries (closure and shunt) what the lesion level might mean to walking, our team, our equipment, what walking aids there are and what we are using. I talk about our family and where we are now.

I answer questions. I hope I’m not too medical or scary. That’s why I like pictures so much.

I always have Nick with me; sometimes I have Katheryn with me as well.

I hope the students get something out of it. I hope that if one of them gets a similar D-day (or knows someone) they will think of how great Nick and we are doing and not be afraid.

So even with my busy schedule I always make time for these classes. I have ideas to approach other schools – or maybe even my own hospital/doctors about talking. If anyone is interested – please don’t hesitate to contact me
I wish I had a picture here to put with me and Nick talking in front of a class – maybe next time I’ll get someone to take one.

EEK! An EEG

I have noticed that Nick will sometimes get staring spells.

Where he will just zone out and stare at something. I mentioned it to our pediatrician and also that I had looked up that sometimes these can be ‘abscnence seizures’. After mentioning it to the pediatrician I’ve also had other friends and family mention that they have noticed it as well.

So he ordered an EEG. And he said the words 'epilespy' which completely freaked me out. I also contacted Nick's neurosurgeon, just in case it was something he should be aware of.
But my understanding of the EEG is not for epilepsy, but sometimes kids with spina bifida will have seizures, just because of the way the brain might be.

No big deal right, just hook up some wires and see what happens.

The morning we were supposed to go I started to get a little nervous. I had the whole day planned.

We had physio in the morning. And it was pouring rain. I had both kids (and luckily my mom). Having the accessible parking sticker is great, especially with a wheelchair. But not in a hospital – where you have a total of 4 spots in the lot I park in (as staff). So I dropped everyone off. And ran through the rain by myself.

We got to visit everyone at work and both kids charmed everyone. I had Nick in his wheelchair and he is getting so good at moving himself around when he wants – even going backwards!

Then it was time. I took of my staff ID, hoped Nick was suitably tired (they said to schedule it around nap time - what nap time?!), had my camera, my book and Nick in his chair and off we went to find the place.

We didn't even have to wait very long. I was surprised, but pretty soon we were in the little room and all set up to be comfortable for 1 hour or so.
Of course out came the camera and the request that I would like to take pictures.

So this is the equipment.

Camera, wires and computer

All of the wires had to match these ones. And they had to be equal, and they had to be in the right place. And of course stay on.

How do they stay on?
Well this cup of gunk is like gel.
Nick's hair is parted, some of the gunk is put on, then the end of the wire then a little 2x2 dressing and the whole thing hardens and stays together.

All over his head.
I'm holding him and trying to distract him and keep Nick from pulling anything.
Really the head ones weren't bad.
But there are a couple of that go on his face, and those he hated.
Then his whole head is wrapped up in dressing and we want him to fall asleep!

The EEG guy took the picture for me.
See how happy Nick is about the whole thing?

Surprisingly he did actually fall asleep!
And I had my book to keep my company!

Finally all of those wires could come off!

And Nick with his brand new hairdo was ready to get out of there!

 Results in 2 weeks.
The EEG guy said it looked good. Hopefully the neurologist will agree.

Morning Workout

We have a new morning routine. We started it a couple of weeks ago (and this particular workout is from November 19th) and even though Nick is being his stubborn self at the beginning. We still did it.

Be sure to notice the expression on Nick's face - that "I can't believe she's making me work like this"

But mommy cuddles at the end (I guess I wasn't completely in his bad-books).
This day it took 20 minutes to walk the length of our dining room.
But he did it.

And he is still doing it.
It was hard that day. Hearing and watch Nick scream and struggle (and swear I'm sure),  was not how I wanted to start a Saturday morning.
But that pay-out has been incredible.

And he wasn't permanently scarred - a quick cuddle and everything was good!

The holiday spirit

We are slowly getting ready...

CE - Continuing to be Extraordinary

We've been enjoying another semester of conductive education.

And we are continuing to see some great stuff. Our conductors are Abigail and Fugie (which I know I am spelling completely wrong - sorry!)

I brought my camera out a couple of weeks ago, to get some pictures of our conductive education session. We have been going weekly from October - December, 2 hours each Wednesday.

We have 2 conductors who are working with our very own spina bifida group.

I LOVE this peanut ball. It does wonders for Nick's balance. The more he's on it, the more he can sit all by himself. (I want to find one to have at home).

And one of the best parts of conductive education  - is that we are not alone!
You might recognize Alejandra from past posts - our walk, and also from helping hearts. Yup, Nick's first girlfriend.

We do alot of things to increase awareness of Nick's body. Like splashing in the water and seeing how his actions will move the toys. And feeling the water - even if Nick we aren't sure how much sensation he has in his feet.
Nick has started to move his toes more, before I would only see it sporadically. Now I see it all the time. I think getting Nick to look and pay more attention to what is going on down there is really making a difference!

Nick has been showing off these last couple of weeks.
He does less complaining when we get him moving in different ways, like this wheel barreling.

And when it's time to get up on the plinth (the plank table), Nick is a go-getter!.
He gets this look like. OK I know what you want, I can do this. And just starts pulling himself up.

We usually have some type of craft to do. Our theme this week was a fishing story (therefore the water and now the fishy sun catcher craft).
Lots of colours to choose and play with. This week Nick has decided to show off that not only does he know his colours and his numbers - but he feels like sharing this knowledge!

He really liked doing this artwork. The gluing and then patting down.
And voila! His own creation.

Then it was time to get going again.
Nick likes doing this part. He pushes himself back, stands up and then pulls himself up on the plinth. Just a 'OK mom, I got this'

Nick likes showing off one of his newest accomplishments. Crawling on his hands and knees (without shoes on his hands)

Gotcha! Flashlights are definitely an all-time favorite

OK fun's over. Time for more ... fun/work!
Kicking over some bowling pins. But to make it work harder, we've moved the bowling pin into a block. So now it's not just kicking, but lifting and kicking. It also helps Nick to see what we are doing too.
I've noticed that when Nick is flat, and I'm trying to get him to kick or something. He has problems seeing what I want him to do. Because 'duh! he's flat on his back and can't see. Once he knows what we want, he's pretty good with playing along.
We also work on isolating his legs. So instead of kicking with both legs, one legs stays straight and the other one moves. Helps Nick to learn about isolating his body.

And more play! Shake, shake shake!

Oops, and more work.
Look has upset that boy is. See that anger!

But look! See that leg staying up - all by itself!!
You go Nick!!!
This was definitely something that he wasn't do in September!

Nick definitely has his favourite things to do!

Putting rings on his feet

Rolling up and down - he was actually laughing

Then it was time for more walking!

These foot print things were great to get Nick to put his feet in the right spot - something we are working on. Because Nick usually just lets his legs go everywhere!

Abagail is helping with the walker, because the stoppers stick to the carpet.

The pads also make sounds - and of course they are coloured and numbered. (Learning everywhere!)

We got something similar at Nick's birthday.

The keep with the fishing theme - we went fishing!!
Nick is leaning against the wall and holding.

And because he had worked so hard today, we let him have a seat!

Finally we had some more 'cicle time' and let him sit - on a balance board.

It's no wonder this boy is so tired on the way home!

And because Nick is doing so well with the walking - we've started to walk out after we say good-bye.

And he is doing AMAZING! Last week Nick just kept walking and walking and walking!

Nick has been doing so great with this semester of conductive education.
Unfortunately with costs and time and travel, we have to take a break for the winter semester. I am so disappointed, but hope to start again in the spring.

I'm still hoping to get insurance to cover this semester of conductive education. We were lucky enough to get the summer 2 week semester funded by a local charitable organization - For the Love of a Child.

I think that Nick has been able to do so much because of the nature of conductive education. Making him aware of his body, and aware of what he can do. Repetition so that he feels that he is in control, and lots of stories and songs and fun, with some learning stuffed in there too!