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, April 30, 2010

Food ... The next big step

Nickolas is almost 6 months old. That means he has a big milestone coming up! Introducing solids - exciting right? Right?! Yes and no. One side - my little boy is growing up. The other side - solids means potential problems.

So I've been dragging my feet. Getting excited and buying the necessary supplies - new bowls, little spoons and some different cereal. But they are just sitting there. Waiting until he is exactly 6 months old. What's the big deal? What could solids really do? It's not like we can stay on breast milk forever!
Just to name a few issues I'm trying to avoid: bowel issues and chiari issues. Oh yeah and the potential allergies associated with latex. It depresses me, it depresses Kyle too. He keeps asking if we should start and I keep delaying him.
Maybe Nickolas won't have any problems. But the potential is there.
Good thoughts! And we'll see what we get in 2 weeks!

Wednesday, April 28, 2010

Swim Time

Nickolas has swimming lessons every Tuesday morning. He really likes it! He is such a laid back baby that he just lies there and enjoys the water.
He doesn't kick at all. Katheryn was a little older when she was in swim class and she kicked more. But that will come I'm sure. He brings his bum up and floats, and will go on his back or his belly, either way he just likes the water.

He doesn't have any problem going underwater. Not that he likes it, he comes up with this wide-eyed shocked look on his face - like What was THAT?! But no crying. I tell you - the most laid back baby ever!
Not that he won't tell you when he is upset or angry - mostly regarding food.

He's a great water baby! (Of course - he is a scorpio). Come summer time we're expecting to spend alot of time at the cottage and in/by the lake.

Monday, April 26, 2010

A new look

So anyone who follows my blog would notice that I've changed the picture and the background. Nice and green and ready for spring! It just cheers everything up! I can hardly believe it is almost May! In no time it'll be summer and time for the cottage, then fall, and then.... ahh back to work!
That is something I am not looking forward to. And so I'm ignoring it until at least after the summer and then figure out what my plans will be.

So to celebrate, on a rainy day we did another photoshoot. I really like doing these, and I'm really glad I have a digital camera so that I can take 100 pictures and then go through them and pick out the ones I like.

Great, except half the time I like 20 of them!

This is one of my favorites.
This picture just showcases how much they love each other. He can just stare at her forever, she just loves playing with him.

Finally he's interacting more with her. She comes right up to his face and says "hiiiiiii". He loves watching her, playing with toys she gives him, and he smiles and laughs with Katheryn! She generally likes it, until he gets ahold of her hair.

We have some milestones to brag about!
His infant development worker came today and was very impressed with his progress. His head tilt is gone, he's holding himself up straight. He raises so much when he's on his belly, and looks around, both sides, but we are still working on one side (he prefers looking to his right). We worked a bit on rolling - he isn't showing any desire to roll. But he does roll onto his side. But things are progressing well. She also gave me some pointers on putting weight on his legs - getting him excited so he straightens out his legs and - wow - he puts weight on them!
He was a bit excited the first time he did it. Flashes that great smile at everyone!

Thursday, April 22, 2010

My personal Obsession with SB awareness

I might be a bit obsessed with things that proclaim that I have a son who has spina bifida. I have a diaper bag that talks about being the mother of a handicapped child (I'm not sure what I feel about the word handicapped - but I like the poem otherwise), I have a bumber sticker that says 'I am proud of someone with spina bifida", I even got a t-shirt for Nickolas that says "Spina Bifida Child Child with Spina Bifida" on the front, and the back "Any questions". I also wear a yellow awareness bracelett that says Hope - Faith - Courage - Strength, and Nickolas' Loved One on the inside.

And I also have my whole 'This is what spina bifida looks like' personal motto for Nickolas. I know there are all variations of spina bifida, and as a baby he is doing very good. But what gets me, why I want to show everyone that 'this is what spina bifida looks like'. Is becasue we were still given a worst case scenerio. We were told to reconsider having him. That we may be making a mistake (by continuing with the pregnancy). And he's here, and he's great, and everyone who thought we were making a mistake can shove it!
I just feel that if people were educated about spina bifida and hydrocephalus, and could see these kids, they would see how wonderful they are.

To finsih off my spina bifida swag I found a site that allows me to create (and 'sell') spina bifida awareness stuff. I made a bumper sticker that says 'Someone with SPINA BIFIDA makes me smile' and a onesie that says "This is what spina bifida looks like". At times I feel like I am getting carried away. That I am making the spina bifida my life. I look at all the sites, follow a bunch of blogs, write this blog and in my journal, wear the awareness bracelet, have the bumper sticker. What I am trying to do is not hide it. It is not something to be ashamed of - we are not ashamed. We are proud of Nickolas, and the spina bifida is not his life.

Anyone who is interested, the stuff I mentioned is available on the cafepress.com website. But really I just did it for my own interest.

Another t-shirt I found that makes me laugh "Shunt Happens".

Saturday, April 17, 2010

Every Blog Needs a Hockey Post

Yes I'm Canadian, and yes I love hockey, especially playoff hockey! Living in the Toronto area I get my choice of any post season team to cheer for - without needing to cheer for my poor Leafs (next season).
When Katheryn was born we watched every playoff hockey game, it was the perfect thing to have in the background when you are breastfeeding (she is a Pittsburg fan - in case you are wondering).

Katheryn had her 2nd year birthday party last weekend. Her uncle Mike and aunt Jen got her a great present - her first hockey kit! And she's been playing it every night in our dining room.

Here is Katheryn posing for her hockey card (and I LOVE the pic of her with the net). We have such a happy family - I can't beleive I'm blessed with these crazy kids!

Here is Katheryn celebrating after a goal!
She obviously has been paying attention when we watch our hockey games - she's a natural!

So where is Nickolas while Katheryn is busy playing hockey? Is he at the 'sidelines' cheering his big sis on?
Every team needs a goalie!

Friday, April 16, 2010


Sometimes I forget about the spina bifida. When he's lying down and kicking those beautiful feet, in his crib, or when I'm changing him. What is more wonderful than that (even better is when he tries to pee on me!). We play, move his feet, kick his legs and work on rolling side to side. Then I try standing him up - what's wrong with that? Nothing except he can't feel the bottom of his feet. He doesn't know they are touching the ground. He doesn't even try to straighten his legs. Up until then I can sometimes pretend that spina bifida at S1 is no big deal.

I know he will learn, everyone says he should be able to walk, he does have strength in his legs and kicks things. I just wish he would stand up on my lap. And he will. Not maybe, he WILL. He can feel some things on his feet, he just doesn't recognize what it is. This is something that can be taught. I think sometimes walking is over-rated. Like that is the first question that people ask, will he walk? There are things that are more important than walking.

Nick doesn't know any different, he thinks he is perfect - and you know what - I think he is perfect too. Who can look at this and not see what a perfect baby he is. If he's not able to walk, but is still a happy child (and beyond), that is all I want.

I have people say how healthy he looks. Of course he is healthy. Yes he was born with spina bifida, and has a shunt, oh yeah and the bladder thing, but he is healthy. Oh this is what they talk about in nursing school that health is relative. I get asked how he is doing and I say great (he is doing great), just look at him!

Just look at that cute chubby belly! I just want to tickle it! I have to say that I love his little belly (not so little). Katheryn was not a chubby baby (there is 19 months and 3 lbs between them right now). I liked having a tiny little girl, now I'm enjoying my big porker boy. Some stats - Nickolas is 19 lbs, Katheryn is 22 lbs.

When you look at those stats - what child would you be worried about!

Saturday, April 10, 2010

Heads Up

Now my little man is ready to take on the world! You hear about the milestones, you are told to be prepared that milestones will be delayed. Until you hear over and over again is he doing this... you realize no he isn't. Well on last week I was able to say Yes he is (holding his head 90 degrees). When we were at our mom and baby group at the spina bifida clinic, which I look at as mixed PT/OT assessment with a mom support group, Nickolas was showing off his new skill. Lifting his head, looking around, Oh hey there is Mommy over there...
It's a whole new world for him now.

I never noticed milestones so much with Katheryn. Yeah we reached them, whatever, at first I would go through the list, yes she is doing this and that and that.... it got repetitive and I just took it as we went. Now I'm almost hypervigalent about milestones, working to get him to reach them.

How to balance work time and play time with a 5 month old! He's not supposed to have work time! (I'm on mat leave - I'm not supposed to have work time either). Tummy time is work, he hates it (getting better now), I don't really have any exercises to do, but we work on bringing his legs up, stretching out his feet and getting him to reach for things.
It is sooo satisfying seeing him do these things.

Heads up world here we come!

Friday, April 9, 2010

Love Life

I've learned this last week that some things in life are important, and some are not. Some people are important in your life and some people are not. Some goals you have are important, and some are not. Family is important, who you are born to, who you birth, or who you make your own. They are the people who love you, support you and care about you.

I lost a friend this last week. It was a shock when I found out that she had died. I had just talked to her (online) a couple weeks ago. She'd been sick, but she was getting better, she asked about my life, my kids, how things were going with me. She didn't know about Nickolas' spina bifida until a recent post and was asking about him. I'd left the message to reply to later. Things got in the way, I left the message as 'unread' to get back to. I never got the chance.

What I learned from my friend Lisa Theodoris.
Be happy, be joyful, show your love for life to other people. Do not hesitate to reconnect with an old friend.
Thank you.

Monday, April 5, 2010

My little girl is 2!

 Happy Birthday to Katheryn!

She does not like being the centre of attention (which is why all her birthday cake pictures are of her crying). We practiced all day. Singing happy birthday and at the end blowing out the candles. I thought we were good. Until she sat at the end of the table and we all stared at her and sang to her.
She is definately her fathers daughter (but he doesn't cry anymore).

The whole day was Katheryn directed. We did her favorite things, including waking up and puking all over mommy (oh so fun), maybe not a favorite thing, but for a little girl with a sensitive stomach, not uncommon. Back to her favorite things; all day with her Mom, Dad and Nick, going to the zoo, playing with cousin Madi, then pizza, water and animals. Overall a good day for Katheryn (until we made her cry with her birthday cake).

The weather was beautiful (I got a burn on my face), considering it is the beginning of April in Southern Ontario, we were lucky for such a great day! Katheryn got to wear her birthday girl shirt that she wore last year (the good thing about having such a tiny kid).

Katheryn's favorite things to do at the zoo?
Looking at water, walking in water, playing in water and stomping in the puddles. Her favorite animals, the polar bears - but really she liked the underwater exhibit (where they were not), and the turtles (in water of course).

Sunday, April 4, 2010

Happy Easter

OK so I'm a bit late in the post - I'll backdate it. But between Easter weekend (which was great!), beautiful weather, spending time outside, playing and with family I didn’t have time to post. It was a perfect Easter weekend. Then Katheryn turned 2 Monday and we spent the whole day outside, at the zoo and visiting, with some present-opening time squeezed in. Yesterday we were recovering and didn't touch the computer.

I also killed 2 batteries for my camera and hadn't been able to upload my beautiful pictures to show off these good looking kids of mine. Apparently I've taken 97 pictures this weekend!

OK Enough with the excuses.

Nickolas enjoyed his first Easter - not even minding when we put the bunny ears on. But of course he doesn't mind - he is so easy going! Katheryn won't let bunny ears on - unless it is her idea (She's my stubborn one).

We tried putting Katheryn in a pretty dress for one of our Easter dinners (we had 2), but she would have none of it. About 5 minutes after this was taken, she had it off. And running around naked in her shiny shoes.

The kids got Easter presents. Katheryn of course loved toys and even clothes. Nickolas got some clothes and a ball. I looked at the ball and thought (is this latex?) So of course he couldn't play with the ball until I got on the computer and sent off a message to the manufacturer asking if it contained natural rubber latex. It didn't and they were very quick to respond. It was a Baby Einstein product by Kids II. None of their products contain latex.

This latex thing has me on alert. I look over the stupid lists of latex free products by the Spina Bifida Association here and think of all the places latex can be (which is EVERYWHERE). And I wonder why manufacturers don’t care about labelling latex, and why the government doesn’t step in and do something about products that could seriously harm our kids.

Oops, I hijacked my Happy Easter post for a latex ramble. OK Here is Nickolas enjoying his first Easter Dinner (next year he should be able to actually eat it)

Thursday, April 1, 2010

What a cute kid!

Is there really anything else to say?

I guess I can always add this:

This is what spina bifida looks like