Showing off!

We had a neurosurgery appointment yesterday. And I had been worried that Nick wasn't near to taking independent steps again. One of the signs of loss of function and the reason we did the spinal surgery last June.

Nick and I had tried doing the steps over the last month or so. Just like in the video, and so we watched the video together. But I couldn't get him to stop and just take little steps. He would just want to start and keep going.

On Monday we went to visit my work and go to a couple of meetings (March Break fun), and when we were walking back to the car Nick just started walking with his crutches and as I watched he just started to do this...

Over and over and over.
He liked doing it more than with his crutches down!

I know that this isn't the same as having the control to start and stop, but it is an incredible step!

The video I have above is actually 2 clips together. Well, the first video is cut off.
This is the whole first video, Nick thought it was hilarious and kept laughing at the video. Katheryn said it should be posted on Fail Army or Funniest Home Videos

I don't think it is that funny, but he bounced right back up!

We did have our neurosurgery appointment yesterday and got the all clear for another 6 months (earlier as needed of course).
I did mention that at the bottom of Nick's cyst scar is a bump. I think that it was normal (and when we saw orthopedics, he said he thought it was normal as well). But I wanted the all-clear from Dr Rutka. And I got it. He said it wasn't anything to be concerned about.

I also mentioned that Nick's eyes will sometimes twitch. But it didn't affect his vision, that I could tell. But we were having difficulty seeing the ophthalmologist at Holland-Bloorview, and were about 9 months past our recommended appointment time.
So Dr Rutka said he would put in a request for Nick for the Sick Kids ophthalmologist.

And we don't need to be back for 6 months!

2016 Awareness Video

I haven't been doing as much raising spina bifida awareness for June this year. (I've been a little distracted).

But I have updated Nick's spina bifida video. I decided to go with a new look and a new song



Here are a couple of sneak peeks!

 

Spina Bifida awareness video

I know that you might get sick of the same video every year. But I want to keep finding ways to improve it (and include current pictures).

So here is our updated 2015 awareness video!

Nick's Video

I was looking over some pictures and video to prepare for our Easter Seals Telethon and interview and thought I would update Nick's animoto video. I know it is a couple of months early (for my June awareness video) but here it is just the same.

JibJab Halloween

The kids LOVE JibJab! So I made up this funny e-card for them.

Personalize funny videos and birthday eCards at JibJab!

Shake it off

October is spina bifida awareness month in the US.
The parents and adults in my various SB groups are really knocking awareness up a notch this year!

A group put together this video, they asked for video's from the group to make up this video.
It is so fantastic!



In 5 days of posting, there have been over 17, 000 views!

Other part of their awareness campaigns are #embracethebif showing what spina bifida looks like, and a public group to show photos.
The SBA (American association) missed the mark (like the CEO... who does not have SB... advertising that she has a bum knee and can't run like she used to, as their campaign). All of this is driven by parents/adults with spina bifida.

Take a minute to watch the video and see what spina bifida really looks like!

Nick's Video

I've been looking to update my animoto video of Nickolas to show at an upcoming talk about spina bifida (it looks like I won't be able to do the talk anymore, but I still wanted to finish the video).
I am updating my video I did about 18 months ago to show off Nick as an introduction into what spina bifida is.



I was looking at the video from last year and though how much bigger he is, and how much more he is doing. And just wanted an updated view of meeting Nickolas.
He has grown so much!

Now I need to work on Katheryn's video!

Spina Bifida Awareness video - 2014

With the month of June, it gives me an excuse to update all of my awareness videos.
I updated the pictures of Nickolas now, and some of the 'educational' slides as well.

And yes the video still makes me cry

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)!!!!!

Spreading Awareness

June is Spina Bifida awareness month in Canada.

I had some co-workers suggest putting together something quick to educate everyone about spina bifida.
So this is what I put together.
5 minutes to balance education and the scary medical information, with what that actually looks like.


Yes spina bifida has diagrams and long words and scary pictures.

But what is really important is the sound of laughter and the look on your child's face when they look at you, and the sound of their voice they tell you they love you.

What's New at SB&H?

You might recognize a face on the home page of the Spina Bifida and Hydrocephalus Association of Ontario.

http://www.sbhao.on.ca/

Or on the facebook group page...

How lucky I am to see that face every day!

Making memories with You

I had alot of fun doing the video of Nickolas, that I just couldn't stop!

The kids loved seeing themselves in the video! So I couldn't stop at just one.

The program I used to make these videos is on animoto.com
They do have a 30 second tease that is free.

It's so easy! The hardest part was trying to cut my pictures down to 4 minutes of song.

If you wanted to do this, my suggestion is to copy all the pictures/video you like into a folder and just upload of all of those into the program. It takes a while to load, but then you have more freedom to move things around the way you want.

Watching you smile

I am going to be doing another talk at Centennial College in a couple of weeks.

I love being able to have Nickolas with me, to really put the face to spina bifida. But unfortunately he won't be able to come with me.

And next year he will be in school.

So I created a video to show at the beginning of my presentation.

I had alot of fun making this.

Now I'm starting on one for Katheryn!

A Holly Jolly Christmas Parties

The kids had a Christmas fun-filled weekend

(one of the down-sides of working shift work is that weekends are very valuable and usually jam-packed - especially when I worked 3 out of the 4 weekends before Christmas)

 

Saturday was following Bartley tradition by putting up the Bartley-family Christmas tree. For as long as I can remember the first Sunday of December was always set aside for Bartley Christmas. It was at my grandmothers and after she passed away it naturally transitioned to my parents.

 

The kids got into putting decorations on the Christmas tree - for about 5 minutes.
Just enough time for a photo-op.

And they thought the village I set up (another tradition) was put out just for them!

The next day we had another family tradition - the annual Ridding brunch.
Which thankfully was scheduled on the right weekend.
The family is huge! With 5 new babies born this year it is only getting bigger - so a hall was rented this year!

The kids thought it was great!

 

What do kids love to do?

Run around SUPERFAST!

And now they had the room to do it!

 

Nickolas spent almost 2 straight hours on his feet!
This was waaay more than just showing off

This was keeping up, having stamina and playing at the same level!

Some words I never would have thought I'd say a couple of years ago...
"Nickolas! don't run over your cousin!"

Katheryn wanted me to find a limbo stick!

 

And we had some froggy games

 

Some crafts... (Trying to stay in the lines)

 

And Katheryn found that the floor was nice a slippery which is perfect for sliding!

She kept wanting me to take her picture sliding

 

Since the kids were dressed up super-cute (I just LOVE that tie) and there was a Christmas tree, I thought I'd try for a cute kid picture (even though I already have my Christmas-tree pictures)

 By the end of the weekend Nick was so tuckered out, he needed help holding his head up to play his leap-pad games

Rolling Action

Nickolas can roll - I know he can. He just doesn't want to. And he's only gone from his stomach to his back without assistance - and back to stomach is harder. He can do it with assistance no problem - he just likes that extra little push. But like I said, I know he can do it.

Well he's gotten alot more comfortable rolling and reaching and just moving his body. So here is a video that proves that YES HE CAN! (and Yes he WILL).

You might not want the volume up loud. Katheryn is in the background screaming because I took away Nick's bath seat because she kept getting in and couldn't get out!