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!

Friday, December 21, 2012

Award Winner

The last day of school (PJ day for the kindergarteners), Katheryn got an award.
She was so happy "Mr Young called my last name in front of the whole school!"
She was awarded for being a Caring Family member (one person from each class).
 
We knew in advance, so Kyle and I came from the school assembly.
Katheryn was very excited to see us.


It's really nice to see her in the school environment and really see how well she is doing. We used to know about everything that is happening to her - now that she is in school there is 8 hours of every day when she is her own person!


 Nickolas came along to the assembly as well - he was the usual rock-star.
And of course I got to grab a cute picture of him too.
Celebrating his sister!


Thursday, December 20, 2012

Baby it's cold outside!


Nickolas has been insisting on walking to go and get Katheryn from school.
So we bundled him all up - with his snow pants and new cars boots (that light up of course) and started walking.


We got across the street with the wind blowing in his face before he froze up.
Didn't want to walk, didn't want to go home, didn't want to do anything but get up on mommy.


Of course some pictures for the first day of winter (and their new knitted hats - thanks Auntie Shannen)


And we went in for some warmth!

Wednesday, December 19, 2012

Fa La La La La

La La La La!

We had Katheryn's first Christmas concert this year.


Luckily we came 30 minutes early, and got a 3rd row seat!
We came prepared with the ever-present Leap Pad.


 We did catch her eye before she went in.
Katheryn was so excited!

 
Some kids were told to wear reindeer ears, Katheryn told us she was a reindeer.
 
 
At first she didn't see us - but eventually she caught sight of us - or just looked like she did.
I had to battle not wanting to ruin anything for the other parents around me, and wanting to get some good pictures of my kid!
 

It was cute! Katheryn's class did 2 songs and the kids were all very animated.
Katheryn sang and clapped and had a great time!



 Afterwards we had a little party in the gym.
All the parents brought some snacks


The stage was free, and I had my camera...


I was the first parent who let her kid on stage. (I have no idea if they were allowed to). And some others did the same.
I had one kid ask me if people were allowed on the stage - in very-respectable-adultness I shrugged my shoulders and said 'sure'.

They played Christmas music - Chipmunks Christmas actually (which Katheryn tells me is her favorite Christmas album) and everyone did some running around and dancing!



Friday, December 14, 2012

Brace Yourself ... revisited

Thought I'd show a comparison for the braces to see how much Nickolas has grown in the last year.
 

We did have some skin marks when we took his braces off last night.
The red mark from the top of his brace against his skin, and a mark from a screw? Both these marks were gone by the morning
We put on more socks and baby-legs today and so far so good.


Thursday, December 13, 2012

Brace yourself!

 I have been waiting for months to get Nick's new braces. And the day finally came to pick them up!
I was disappointed with the design on the last braces that I wanted to be very specific about our next ones.
I wasn't there when they were fitted, but I sent Kyle with very specific instructions. And talked to the orthodics guy multiple times. It still wasn't exactly what I wanted. But it is close enough
 
I had a number of different pirate options for Nickolas to look at - and of course he picked pirate Mickey!
What I wanted was for the picture to be wrapped around the entire AFO so there wouldn't be any brace showing, but I think there was concern about the picture becoming fuzzy, or they didn't get what I mean. But this is what we have.
Nick loves it - so that is the important part!
 
 
These braces are special, we are trying something new.
Something that is going to help and I'm excited to see what the help will do. And that excitement is trying to stomp all over the feeling I have in the pit of my stomach.
So let me explain.
 
See how Nickolas is standing in this picture.
See that left knee of his bending in.
 
 
It's been doing this for a while and we tried a couple of things in the summer in see what helps. I thought I had blogged about, but apparently I didn't.
it is only the left side that is showing this weakness. And needed the support. We tried twister cables - or made up twister cables. But it didn't do what we wanted it to - and I think they have to go over the clothes which is not what we wanted.
 
 
So the next step was a KAFO. Which means Knee-Ankle-Foot-Orthodics. This provides support at the ankle, but also at the knee. And also prevent that knee from turning in. And will make it stronger. It will still let him bend his knee and move, but with more support.
Some of the stomach feelings were the picture in my head of Forest Gump and his metal braces, but also that it feels like we are going backwards. That I want to take away the bracing, not build it up.
But that is not how spina bifida works. And I know this deep down. As Nick gets older his gets heavier and taller and more active and he will s how us what is needed - and he is showing us he needs a KAFO on the left side.


So today was the day!
We decided to go with Grandview - which is local - for orthodics this time. They run clinics on Thursdays and our PT comes to the clinic as well, so I felt comfortable doing this here instead of through Bloorview. And apparently they are all made at the same place anyways.

So here it is...


The metal is still a little scary looking, and I'm not sure how his skin will tolerate it. But the top part is made with softer ?plastic? that should be ok against his skin.
And it's definately bulkier.

Kyle and Nickolas got to play while they were working on some adjustments

 
Then it was time for a trial to see how he walked with them.
 
 
And we discovered that since Nickolas is standing up straighter, he needed his walker height increased as well (for the second time in 2 months)
Never noticed how much he was bending down and leaning forward...
 


And then we were off!
(The whole trip lasted 45 minutes)


Of course I wanted to take some pictures of Nick standing up straight ...
(maybe a little too straight)


We had to get Nick some new pants that aren't so tight over the KAFO, and of course new shoes and new winter boots (actually found some with minimal difficulty - at Walmart)


Nick doesn't seem to mind them (so far)


During potty time he was telling me he wanted them off, but I think that was just becuase his legs were exposed and he coukld see there was something there.
But he was starting to feel more comfortable standing and testing being hands free - so he must be feeling more stable with them.