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.

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

Card exchange

Christmas is a time of year to be thankful and be around family and people you care about.

But I have some family and some people in my community that I have never even met!

 

So, an extremely smart and creative woman I know decided to do something about that!

With a Christmas card exchange!

 

Cassie collected 72 names and addresses and divided up all the names to make everything fair.

 

So I got my writing hand all ready and warmed up, and I thought about what I wanted to say.

And just wrote...

 

and wrote...
and wrote...

Then I had to go out and buy a bunch of American stamps! (And some Canadian ones)
I think I ended up with 37 cards I mailed out all together!

Now I just have to sit back and wait for our own cards to come!
(And maybe give my writing hand a break for a while)

Santa Baby

Writing, writing, writing!

After we visited Santa Katheryn wanted to write a letter to tell him what she wanted.

Her lists wasn't very long (she only says she wants one thing).
So we worked on an actual letter and not a wish list

 

She was so proud of her first ever letter!

 



 

She wrote every single word (no spaces), and just asked us about spelling (and sounding it out).

 

I think Katheryn tried to soften him up a little bit first (Santa-dear)

Santa Dear. My name is Katheryn. I like Tinkerbell for Christmas please.
I have been good all year.
From Katheryn.

Her letter (after I scanned it to save it forever) is already in the mail for Santa.

Santa Claus is coming to Town

All dressed up, and we need to see a man with a reindeer!

 

The kids distracted themselves in the line up.

 

And there was a play area with colouring and movies

Or played with the Leap Pad (which goes everywhere with us!)

And got a family picture with the big man!

Katheryn was very excited - but still told us she wanted to sit on Daddy's knee - not Santa. Nickolas took one look at him and grabbed me. But no tears or crying.
Katheryn even talked to Santa and told her what she wanted for Christmas!