Rockstar!

 Nickolas has become a rockstar!

He is singing and dancing and working any type of drums he can (literally) get his hands on!

Some of his talent has gone to his head (as you can hear), he is aware of his star power!

 

Nick will climb on anything so he can make more noise with is hands.
SHHHH he's getting a drum set for his birthday (I can't believe we asked for it).

 

Nick already has the beginning of a fan-base. You can hear Katheryn cheering him on at the end. And he's dancing (he dances with his eyes screwed shut). And singing his favorite song EVER! (From Jake and the Neverland Pirates).

 

I'm always looking for magical musical talent in my kids, Katheryn has a number of different piano's and keyboards, some flutes, a xylophone and they are always making some kind of noise. I'm considering a guitar or 2 for them as well.

We are definitely not a quiet household!

 

Rock-Star!!!!

School Routine

I'm trying to start a new routine with Nickolas

In the morning we take Katheryn to the bus stop (Kyle, Katheryn, Nickolas, Sammie and me) - Nick is in his wheelchair.

But I want to build endurance with Nickolas in his walker,

So in the afternoons we are taking out the walker

 

Nick is getting distracted very easily
And we are taking our time

In the last 4 weeks we get about a quarter of the way to the bus stop (uphill)

Nickolas is having a lot of fun doing it
And really feels that he is accomplishing something

I am so proud of him and how much he is trying!
I am always cheering him on - and so is Katheryn when she meets back up with us

The progress is slower than what I want
And I try to remind myself that Nickolas doesn't work on my timeline

Dressing up!

It's officially October!

Which means that I can start adding more to our Costume box!

 

And I should probably get a moving on our Halloween costumes!
I excited for our first wheelchair and walker costumes!!
It looks great in my head...
Now I have to figure out how to actually make it happen.

On another note...
October is also Spina Bifida Awareness Month in the United States!
(It's June in Canada)
There are lots of awareness going on in different blogs!
Showing What Spina Bifida Looks Life
31 Days of Spina Bifida Awareness
Our Families, Our Children
The Good and The Bad - Potter Style
Days of Spina Bifida Awareness - Just found this blog!
Information about Spina Bifida
This one is about Down Syndrome, but just sub in spina bifida and you got it!

I've seen this on some people's FB pages, and I made this!
I have it proudly on my car, but it's also available on cafepress.com

Dancing through Life

Nick LOVES dancing!

If there is any music playing (or being made) he is there wiggling that bum and moving those feet!

Half the time he just starts singing so he can dance!



 

Sometimes he channels his inner John Travolta!

 

 

Katheryn loves dancing, and I enjoy dancing (but only since I stopped caring if I looked silly or not). I am ecstatic that Nickolas is loving to dance as well.

 

When Nick was a baby and I worried about everything, I (of course) worried about dancing. I  bought a book (I can't remember if it was suggested or if I found it myself) called Giraffe's Can't Dance. It's a little story about a giraffe who really wants to dance, but isn't very good because of his giraffe body.

Of course I won't ruin the end for you, but the cover might clue you in!
I eventually stopped worrying if Nick would be able to dance, but started showing him he could dance if he wanted to. And Nick already has better foot-work than I do!
I wish I had more video, I guess we'll just have to keep dancing!



Another Year in the Clear

We had our annual neurosurgery appointment at Sick Kids yesterday.

Nothing like an early morning alarm clock, waking up a sleeping kid (who woke up great) and getting out of the house in the dark. I made the trek downtown by myself (I hate driving downtown and usually get someone to drive with me). I made a couple of detours by accident but eventually I made it with enough time to spare.

Nickolas had his choice, did he want to go in his chair? Or did he want to walk in his walker?

He was very adamant that he wanted to walk.

 

The benefit of a 8am appointment is that we were in a room right away.
Nick wanted to climb into the window and enjoy the view. He thought all the construction around the hospital was great!! But couldn't figure out where our car was parked.

Dr Rutka came in, talked to us. Checked his shunt on the outside. He said the MRI results were good. One ventricle was slightly bigger than the other ventricle, but that is not unexpected.
I asked about Nick's neck cracking all the time! I know it's pretty minor, he said sometimes it will happen but there isn't anything to do.
We are cleared for 1 more year! Unless of course something happens and we won't need to do another MRI then. Things are staying stable.
He told us that there are still things to watch out for (we are never really in the clear); shunt and tethered cord. Then we were out the door.

We didn't hurry anywhere, Nick wanted to take some time to enjoy the sights, Nothing like being 6 floors up!
The elevators were a bit of a challenge.

The doors don't stay open long enough for Nick to make it with his walker. But eventually one opened close enough for us to get there. On the way to the parking garage we missed 6 different elevators between people coming out, going in and trying to get in there to hold the door for Nick to come in.

Nickolas was very excited to be walking around with all the big people! He was really distracted by the feet, so much that he almost walked head-long into a computer! I stopped him just in time.

He thought it was a great adventure!
All before 9am