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!

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".

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?

OF COURSE NOT!

Every team needs a goalie!

 

Rambles

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!

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!