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!

Monday, November 29, 2010

O Christmas Tree…

Every year we pick out the most beautiful Christmas tree. And after we defrost it’s time to decorate!

I don’t really mean we. This is more of a mommy job. Kyle is in charge of putting up the tree, lights and angel/star (depending on who’s year it is) and he brings up all the boxes of Christmas stuff.

Katheryn liked that we had a TREE in the house! And playing with the branches that were taken off.

Then I take over. Decorating the tree, decorating the house, listening to Carols and teaching the kids all my favourites.

Katheryn thought the tree was great! Especially when we put all this stuff on it! That she can pull off and hide all around the house. At the moment we have most of the decorations on the top 4 feet of the tree, not so much on the bottom 3 ft.

And Nick is happy to play with whatever he can get his hands on! And by this I mean crawling over to get whatever he can get his hands on. He is army crawling all over the place! And sometimes getting his hips and knees helping as well.

So it might look  like Katheryn is helping to decorate - but really it's the other way around. She LOVES those candy canes! I've actually taken off the hooks so she can carry and collect them around the house.

So this is the finished product!

 And a couple of really happy kids! Even if they do look kinda goofy in these pictures!

Sunday, November 28, 2010

Christmas Traditions

I've been thinking alot about Christmas traditions and the kids. At first thought I would say we don't have any. But this is as we come back from picking and cutting down our Christmas tree. Something we've been doing since I was a child and something we did the first year with Katheryn.

Last year was a complete Christmas write off. We did not have a Christmas tree, we hardly decorated for Christmas. Nick turned 6 weeks old at Christmas, we had spent 2 weeks and 4 days at the hospital, we had nurses and all kinds of people coming to the house. I just didn't have time or energy to do Christmas. AND we already knew we were staying at my in laws over Christmas. So last year we really didn't have any traditions. And the year before that was Katheryn's first Christmas. Hard to believe.

So here is our first Christmas tradition...
Getting the tree.

So when you go to get a Christmas tree, it is important to dress for the occasion...

First we have to get warm, and cute

Then out comes the sled (snow is not necessary - as we found out). 

Katheryn is all ready to fill in as a sled puller!

And we are on our way!

Then we find a tree we like. Or a couple of different trees we like!

Katheryn found one she likes!

And the decision is made...
Katheryn is ready to help!

 (note the keys in the grass! Luckily we did too!)

 Katheryn did find the only patch of snow in the whole place! 

We are ready to go!

Katheryn's turn to be pulled!

 This tree hunting business is tiring!

 A great way to get ready for Christmas!

Thanks to my parents for coming and help with the kiddie wrangling!

So we do have some Christmas traditions, but I think we are still in the rookie period.

Saturday, November 27, 2010

Mommy the Educator

I find myself in a great position to get some valuable information out about spina bifida.
And I LOVE it!

I just returned to work last week, I work as an obstetrical nurse in a labour and delivery unit. Being back at work I have everyone asking me how Nickolas is doing. I wanted to be able to say more than just "great". Which he is donig. Every milestone is dependant on walking that I wanted to be really sure that I didn't talk about what he wasn't doing. Nickolas was very nice and started to army crawl, so I could talk about what he was doing.
I had a couple of people (who didn't know about the SB) ask if he was walking yet. "No, not yet, it'll still be a while, he was born with spina bifida". Then I get the sad face, and 'I'm sorry', I am much more able to say "Don't be, he is such a happy baby he doesn't care if he has spina bifida." And Nickolas will walk, just not yet.

A couple of times I find myself educating other health professionals. And having them learn something. I only hope that the next time any of the obstetricians I work with have someone who's baby is diagnosed with spina bifida they will think of Nickolas while they give out their predictions about quality of life.

But I've had other opportunities to educate as well.
I got to speak at a college to a group of PSW and RPN's about our life with spina bifida. I explained about spina bifida and all of the stuff that goes with it. Most of the material I got from my other blog http://www.aboutspinabifida.blogspot.com/ and then just talked about it. About our life and how things were, our day to day, the fact that Nickolas has all of these diagnosis' but he is still healthy and our lives have changed but not drastically.
Everyone was very interested (of course - attendance was mandatory) and they asked alot of questions. I was very happy that I had the opportunity. AND we all wore our REDEFINING SPINA BIFIDA shirts.

They also got the see the kids in action. The good thing about being a guest speaker is that certain things are overlooked. Like having a 2 year old running around the classroom, and doing half of the class with a 1 year old in your arms. But this is my life, hectic but enjoying ourselves.

Friday, November 19, 2010

When mom's away...

I returned to work this week. To celebrate mommy's return to the workforce, Nickolas decided to accomplish some work of his own!
Army crawling!!!

Way to go Nick!
(you don't have to listen - it's just background talking in the video)
So I stay home with him for the whole year! Then the one day I'm not there! BANG! What a show-off! At least I don't have any concerns about him adjusting! I adjusted very well also. Back to 12 hour shifts and commuting (yuck!), but also to being a nurse and having co-workers, adult time and some outside responsibility. It helps that I love what I do - labour and delivery. I can also appreciate the time I have at home more.

To top off our busy week, yesterday I went to the college and talked to 2 classes of PSW students about our life with spina bifida. Complete with a little education, alot of personal experiences, 2 children who were there in person and lots of pictures. I took alot of info from my education modules that I did in June (spina bifida awareness month in Canada and moved to a separate blog) I think it was a very good success.

Our Redefining spina bifida t-shirts came in, and that was what Nickolas, Katheryn and I wore to the class. When we are talking about spina bifida and how we coped and went through so far in our journey I don't know what is more fitting than:

Monday, November 15, 2010

It's someone's birthday!

We had an excellent first birthday celebration!
Full of friends and family, and cake and presents and lots of kids running around. Nickolas had a blast!
He got to eat and get messy - but surprisingly not too messy.He ate his whole cupcake, and loved it (surprise, surprise).

I want to mention here that I know Nickolas is wearing some pretty boring clothes for a birthday celebration. But he actually did have a matching outfit to go with Katheryn's dress. Amazingly it was soo hot that he couldn't wear his sweater at all! We actually had all the windows open in the house. (In November, in Canada I was very surprised).

OK back to presents...

Nick got lots of presents, some toys and clothes and Katheryn really liked showing him how they all worked. When Katheryn saw his new foam chair - she ran and got hers - so they could sit together!

Katheryn was too busy having fun that she didn't even want to open the presents that she had to open as well (so she didn't get jealous). A couple of people had similar ideas and so Katheryn had a few presents to open. But nope - couldn't stop her playing to open anything!

It was really fun watching Nick try to figure out his new toys. And the smile on his face when his toys started working! He really liked this toy racetrack, lots of noise and things going all over. Nick sat there and kept putting more and more toys down the track so they could roll around and shoot off!

And at the end of the day, everyone was all tuckered out and ready for bed!

The perfect birthday!

Friday, November 12, 2010

We are almost there

Today is the last day I can say that Nickolas is "almost one year old". As of tomorrow, I will have a 1 year old!
Somehow my baby went from this...
seconds old

and this...
minutes old

a day old

A couple days old 

 To this big boy!

I cannot believe how much I have grown in this past year. Yes I said how much I have grown. I went from someone who could not see the future without worrying. I was only able to see until Nickolas was born and not beyond that. I cannot believe all of what I was missing, all of what my fear kept me from seeing.
One year ago I had only fear and maybe's and unknowns. Once Nickolas was born, and once I was able to see him (a time that stretched over 5 days - thanks H1N1), everything fell into place. I did not have a limit of the time I could look in the future. I can think about the child and the teenager and the adult that he will grow into.

So we are almost there. Almost at the one year mark. When my baby stops being a baby and becomes a toddler? (I don't know, I think he's still my baby).
We are having a big party tomorrow, so I should really stop blogging and work more on cleaning the house!
Can't wait for the party tomorrow - pictures will follow!

Wednesday, November 10, 2010

The Returning step...

Going back to work.
This is another big change that is going to happen next week. Yes I'm leaving my baby (ies) in the care of someone else. Losing that bit of control, over making sure that everything is how I want it.
This is a big step, and it isn't. Technically it has already happened. I went for a training session at work (we went from completely paper to computer charting since I've been on maternity leave). Nick spent the whole day at daycare - with Katheryn - and everything went great!
In Canada we get 1 year of maternity leave. If you had asked me what my plans were during various times in the last 12 months I would have given you completely different answers. Full time, part time, casual, not at all...
I think I settled for the best of all worlds, I am part time - job share. So I have a consistent schedule, but only half the hours. I am also able to get consistent days of the week off (for physio mostly) and still make money to pay the bills.

So... big breath ... I am entering the workforce again.
The kids don't mind at all. Katheryn absolutely loves daycare - and Nick loves being with her. And all the kids they interact with is fantastic. 
I am not actually that upset about going back to work. I miss the adult conversation and do not want Nickolas to be too attached to me. But I do want that when I walk in the door after a long 12 hours on the job.

So we'll have to see how that returning step goes, and hopefully I won't fall flat on my butt! 
Catching a baby - It's like riding a bike right?!

Tuesday, November 9, 2010

The next step...

Actually we are taking 3 big next steps this week. But for now I will blog about this one.

Why is it that it is something that I pushed so hard for, have been asking our therapists for since September, and now that the day is almost here I have this funny feeling. A heaviness in my chest. A little part of me wishes that we were not here yet.
Of course the bigger part of me is thumping that little part down with logic and excitement. This will help my baby stand! So that heaviness is overshadowed by excitement that yes, we are taking this step.

So what equipment is causing me all of these feelings? We are getting our AFO's (ankle foot orthodics) and a standing frame.

One thing that I was surprised about (and I don't know why) but to make this piece of plastic more personalized - considering it is going to be with us for a long time - we get to pick a design!
So after looking through all of the different designs (they had so many cute butterfly ones - I think Kyle would object) the only one that really stood out for me is the Toronto Maple Leafs - for those International readers, this is our hockey team and we are die-hard fans.

So once our design was picked, the real fun began. Fitting! Nickolas was a champ (of course) but what he really wanted to do was help. Oooh look at this blue stuff, can I touch?!
Pretty much it is the same as when they put on a cast. I guess it is that exact same as when they put on a cast! They are casting his foot and leg so that they know that the braces they are making are for this foot!
First they put on this sock, and then the  blue wrappy stuff (that is the technical name). That sets and then it's just cut off.

The orthodics guy who did the casting I'm sure thought I was weird when I asked if I could take pictures. He didn't say anything, but it is pretty simple.

This is the end result, one casting of a foot.
I guess we really ended up with 2 castings.

The next thing we did was measurements for the standing frame.
It is personalized for him as well, so we needed measurements of his chest, hips, knees and ankles. I am still not that clear on the size of this standing frame. When I've asked I've been shown them followed by "but yours will be smaller". So we'll see what we get.

Nickolas breezed through the appointment with his milk and his cheerios (which we ended up spreading throughout the room).
And in 3 weeks we should have our first pieces of equipment. They didn't come cheap either. Boy was I surprised to see the invoice of $4000! Half for the stander and half for the AFO's. Really happy that government (75%) and insurance (25%) pay for these steps to verticality!
... yes I made up that word.