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.

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).

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)

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

The art of the catheter

When you first get the SB diagnosis you get the whole walking speech and then "bladder and bowel issues". Depending on what side of the fence they are sitting, the doctor can spin it either way (easily manageable or diapers for life). You think ok I can deal with that. He's born and the cathing schedule starts.
I had a head start and experience cathing so it wasn't that bad. Beyond the need to stick that tube into my little newborn's penis. And it goes in how far?! And its worse at the beginning when you are learning, he can't be on his back, you have to wake him up, he is screaming and you are upset and tired.

After doing this for 4 1/2 months I could cath him with my eyes closed! Now the challenge isn't the actual skill of cathing.
Nickolas' cathing has changed in the last month. I had it down to only cathing once a day, then the volumes started increasing. I was getting upset (you might have noticed in previous posts). As if there was something I could do. There isn't. What will pee, will pee.

This is the art of cathing. When you spend 10 min watching pee drip, drip, drip and fill up the container with higher and higher volumes you have to calm down. When you have 10 min to think about it you really need to talk yourself down. There isn't thing you can do to get lower volumes, a neurogenic bladder can be managed but trying to cath less, when his bladder needs to cathed more, does not help.

I've described it to others like an elastic. If the bladder doesn't completely empty and stays too full then its like the bladder is a stretched out elastic. And it can't get back to a tight elastic that can pee on its own.

Nick's volumes are starting to go back down, but I'm trying not the think about decreasing the times I cath him. Yes it would be nice to go back to cathing once a day (or be that lucky baby that doesn't need any cathing!) But that is how you get stressed. Please let me accept what I cannot change. Like the art of cathing.

Ohh big news! Kyle cathed him for the first time on the weekend!!!