Conductive Education Camp - part 1

Nickolas started his first child-only camp!

Nick was able to 'upgrade' even though he isn't 3 years old yet. They thought that he was ready to be more independent and with older kids.

So we had Conductive Education camp through March of Dimes for 3 hours a day, for 2 weeks.

It had only been a month or so since we had our final spring session with Abigail, so Nickolas knew exactly where we were when we pulled into the driveway.

But we did not talk ahead of time that he wasn't going to have mommy there. I didn't want to get him worried, and over the spring I started doing less and less so he could get used to doing things without me coaching him.

We walked in together. But when it was time for me to go...

MOMMY!!! I WANT MY MOMMY!!!

And I left.

I had no idea what I was going to hear when I picked him up 3 hours later.

But Nickolas was fine.

They said he was upset and crying for about 30 minutes. And didn't participate in any of the floor part (which he hates anyways). But that this is normal.

And it will get better.

Nickolas got to walk through the doors - all by himself!

And I already showed the video of his experience with the ramp

Over the 2 weeks Nick got more and more comfortable and transitioned better every day.

Until finally the last couple of days we had absolutely no tears at the drop off!

And Nickolas made all kinds of new friends as he 'travelled back in time' in a time machine

We got a book at the end of camp with all of the pictures and what Nickolas was doing good every day - as well as talking with the conductors when we picked him up.

Things that we worked on was walking over a floor ladder or between parallel bars and stepping over things - going control over where his feet were going, instead of anywhere. Walking in parallel bars and between ropes - all with a fun activity (building castles, finding dragon food).

He also worked on picking things up with his toes (dragon food) and passing things to his friends.

Some of the things that Nickolas did well was sitting on the peanut ball, pinching things with his toes and stepping over a floor ladder

By the end of the week Nick was having fun with his new friends!
The ever-typical boy. Always wanting to be in the drivers seat!



3 years

It's been 3 years.
3 years since d-day (diagnosis day). Actually 3 years isn't for a couple of days - July 16th I think - but this is Friday the 13th and I thought it was appropriate.

I don't know how to mark the worst day of my entire life.
Except maybe to show other parents that the worst day of their life can't turn into the greatest joy they can know. And review a bunch of past pictures...

A couple of words in a doctors office doesn't describe what life having a child with spina bifida will be like.

The waiting, and wondering and worrying before the big day!

The introduction and realization that he is actually here! In your arms!

The unbelievable, I-didn't-know-my-heart-was-this-big, kind of love

On d-day you can't imagine the joy you hear in the first sound of laughter

The words 'spina bifida' do not describe my little heart breaker

It does not define the things that he can do, or when he will do them.

A diagnosis doesn't tell you the incredible bond he will have with his sister

Or how beautiful your child will be.

Thinking about d-day gives me an opportunity to go through all of the wonderful things I didn't think I would have 3 years ago.

An all-around fun kid!

Who sometimes needs some encouragement, but really just redefines spina bifida every day.

Who is just a little nervous about trying out new things (like the first time he was upright by himself - December 2010)

How a mothers touch can make all the difference, even when you feel you are powerless

They don't tell you on d-day how much your child will love the bath tub and bath time

And waits until everyone is watching before showing off (standing for the first time unassisted - Feb 2011)

And is so proud of himself!

The diagnosis of 'spina bifida' doesn't mean that you won't have a trouble maker on your hands!

Or a silly monkey - with a quirky sense of humor!

A little boy who loves animals and learning about new things

And LOVES, LOVES, LOVES chocolate!

On d-day all you can think about is how your child will be different from everyone else. But that's not true, he will fit right in with your family.

Until he wants to stand out and show he is his own little boy!

And that he really, truly is the coolest boy in town!
(Even with geeky parents)

With a family who only wants to see him smile, even when he is sad

And will light the way on whatever path he wants to take

Spina bifida (and d-day) will show you that you are stronger than you think you are (October 2011 - outgrowing his stroller)

and will help you have an open mind about things that you were always worried about

On d-day you realize that you life has changed forever. But as long as you keep moving forward with a smile on your face you will get to where you were meant to be.

And there will be love

And there will be laughter

And the rest just slides into place

3 years after d-day I only wish that there had been more awareness of what spina bifida truly looks like when we got our news

And somehow in 3 years (OK almost 3 years for this picture) we went from this...

To this...

And I wouldn't trade this craziness for anything!

Anyone wondering about how life will be after d-day should check out this borrowed post Sometimes the Doctors are Wrong Thanks to Jamie for collecting all of these stories in her blog!

"I did it!"

That is what Nick told me when he was walking in the backyard with his walker!

It was also what he said when he started walking instead of crawling to get around the cottage this past weekend!
"I did it!"
I've never been so happy!

Nick got to be up and play with his sister and cousin, on his feet. Eye level
Beleive it or not, he liked this - this was him 'running' in the bubbles.

Nick is starting to learn he has the ability that I have beleived he has had for months!
But he is definately still a mommy's boy!

Thought I'd share this clip - Nick going down a wheelchair ramp for the first time!

Spreading our fins!

Nick has been exploring his independence

Swimming/crawling by himself in the lake

Taking a spin in the boat (while docked)

Playing on the boat

But the best part of Nickolas finding his independence - is that he has realized that he already has the tools he needs to work with his ability to get moving.

Instead of crawling to go where he wants - he started to go to his walker, and then walk to where the watned to go!

Chalk it up to a good day!

Cool dude with the sidewalk art!

And Katheryn's favorite design ever (a rainbow)

red, orange, yellow... green, followed by blue, then comes indigo and violet, a rainbow song for you!

Those knee pads sure come in handy with the hard driveway.
Nick loves crawling all over and leaving his mark!

 And because we were in the driveway, we might as well pull  out all of the bikes.
The kids are both still learning how to ride them

Katheryn has started to figure out how to move the pedals to move forward, just working on getting her to keep moving them forward

And Nick has been able to keep his feet on the pedals.
Now we are just working on getting him to move them

But in the meantime - they are still having fun!