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!

Wednesday, May 25, 2011

Shunt watch

I really dislike shunt watch. I like to think the shunt is nice and happy and working well. I hate the thought that the thing in my sons brain that makes him healthy could stop working at any time, for no reason!

But I also know it is a necessary evil. And while I might wish he didn't t have it, that he was one of the lucky ones who have been able to miss this particular aspect of spina bifida, I have to be realistic that he just wasn't in those odds. That it just wasn't meant to be. He has a shunt and it is there to stay.

Shunt watch has different levels (sorry I couldn't resist these colour watches!). Green (everything is great we are good to go, measure every month or so, know what the symptoms are) Yellow (something is going on, not sure what it is, will continue to observe and measure, contact doctor by email, post on forums), Orange (something isn't right but I'm not sure what, I'm thinking of what I need for my over night bag, who can cover my shifts and where to drop Katheryn, but not packing yet - continue to watch and pray, its not an emergency, contact the doctor directly), Red (call the doctor, pack the bags expect the worst and hope for the rest), Black (heading in, no question we need help, hope and pray).

We haven't actually hit all these stages. Nicks last revision was probably a Red. This past week we had a yellow/Orange. I thought that things were probably ok, but something wasn't right.

Nicks fontanelle closed a couple of months ago. I had just done a whole "assessment" on the Monday - measured and plotted his head, felt everything and it was all a-ok!

Tuesday night, we are all in bed, I'm fiddling with his hair and feel his shunt. What the?!!
His shunt had moved. You could feel the bulb had shifted and the tubing before it. Oh no.

Nick looks up at me, flashes me his smile and goes back to laughing and playing with his sister. OK, deep breathes.
He's acting fine, no swelling or irritability, he's sleeping normally. He's acting the same! I really don't want to bring this happy kid into the hospital and have them tell me he needs surgery!!!

So I waited until the morning and contacted his neurosurgeon, left a message. Waited and watched. And posted in the babycenter forum. I kept silent for everyone else. Didn't want to make it real.

Shunt watch Orange moved to shunt watch Yellow when other moms said they had similar things happen. Nick also continued to be fine, none of the symptoms I was looking for. I kept feeling his head and it still was feeling wrong, but not wronger.

I thought about it, a lot. What if the shunt was out of place, what if he wasn't showing symptoms? What if we did the shunt series (ultrasound, x-ray) and said it had shifted. But he's symptomless. Would I want to wait? Pretty much. And shunt shifting wasn't on my list of signs to watch form

About a week later, and firmly in code yellow, I messaged his neurosurgeon again, who reassured me if he was symptom free there isn't any concern.

So we are not in green - yet. Maybe a lime green. I'm not 100% reassured, but I can sleep at night, and blog about it.

I can't say why I was so hesitant to talk about it. Why I was scared to put it in words or writing. But for now everything is good.

More than good! Nick is having a blast exploring and not showing any symptoms of any kind.

Monday, May 23, 2011

Intro to summer!

The holiday long weekend is usually a lot of fun. When I was younger it usually involved camping, lots of rain and drinking. As we got older if I wasn't working we were cottaging. Once we had our kids the may long weekend turned into our first family long weekend. Even if I was working I'd try to find a way up for at least one day.

It marks a turning point, from the cold winter and the dreary spring, to that first hint of summer, sandals, shorts and swimming. Before the AC gets started and when you want to be in the sun and not looking for some elusive shade.
The May long weekend (our Victoria Day weekend) is a glimpse into the summer to come. We've been doing the same thing for the last couple of years. We head for the cottage. Which sits on a beautiful, shallow, sandy lake, and where we are surrounded by extended family.

The first year we had Katheryn, she was about 8 weeks old. We were sooo cold, we had to pull out hats and sweaters. But we still weathered through.

The next may long weekend was when Katheryn took her first steps. And there was lots of family who got to share this experience.

Last May long weekend we had Nick. I remember it was our first trip away from home (but still 2hrs away from Sick Kids). And an opportunity to show off Nick to family - while collecting donations and spreading what spina bifida looks like. That was also a nice weekend where we got to go in the lake. Sit in the sun, try new foods (solids!!) And freak out about our constipation issues. wow has it only been a year?!

This year the lake continued to call for us. The first day I let Nick put his feet in, but thought it was still too cool to actually go in.

But we did make it completely in the lake. Nick LOVED it! He would have lived in there if he could. He kicked and he splashed and he sat up.

He also had fun with the big kid toys. The rocking horse thing, the slide, the swing.

And he got to explore the cottage. He was able to get into drawers, and the fridge! He could open doors and splash in dog dishes. Nick was able to get underfoot!!!
It was great!

And I love that I got to see the prequel for the summer to come!!!

Friday, May 20, 2011

Look what I'm doing now!

OK So I've been completely MIA. And it's not going to get any better this weekend (Victoria Day Weekend - cottage time!!).
So if I promise to blog next week - will you forgive me!

In the meantime - this is Nick's newest accomplishment - pulling himself to kneeling! He did it all himself, but Kyle had to help straighten his legs.
AND we start physio again soon.
AND Nick passed his 18 month mark a very happy boy - which made me a very happy mom.
AND I have lots I want to update about (including our current shunt watch).
AND I was blessed by being part of a new spina bifida mommy's journey with the birth of her Gage!
AND things are great!

Just wanted to update quickly and bump that lousy 18 month downer post!

Thursday, May 5, 2011

18 months

I know it is a little early (Nick is 18 months next Lucky Friday the 13th - but it is something that has been on my mind alot lately).

I thought that 18 months would make me excited. I thought it would be a happy age, a good landmark. It has always been one of those ages for me, the ones you look back and gauge things against.

I was warned.

I was warned that 18 months is a hard time for us parents.

It marks a time when some of the motor deficits become very obvious. When I see Nick pulling himself along on the floor and all the other kids his age are running around. Not just taking tentative, shaky steps, but running, everywhere. I remember Katheryn at that age (just before I had Nick), and he is nowhere near where she was, in so many areas!

I need a new mantra, I need to remember that this is not a race, it is not a contest. Nick will do things in his own time, but he will do them.

And by comparing him to other kids at 18 months isn't going to do any of us any good.

But I just can't help it some days.

I was invited to get together with some moms from my babyville mom and baby group. The last time I saw most of them, was when Nick was 1 year old. And yes some kids were walking and standing, but not all of them. This get-together, I was working and wasn't able to go. I am very glad I wasn't able to go. I realized later that how different Nick would be from these kids. How delayed he would look. How sad it would have made me (and how sad it makes me now). And it makes me sad that I'm glad I didn't go. (Yes, I know, I can't really win with myself!)

I hate thinking of Nick in those terms. different, delayed, disabled. Those are not words that I want to use to describe my beautiful, happy boy. These are words that I can forget when I stay in my little Nickolas bubble. Where Nick is making great big strides, working hard (harder than he wants) and making progress. Meterstones.

Our current working goal is getting him stronger
lying to sitting. So basic, and we are still working on it!
AND we still haven't been picked back up from Grandview! (For PT).

Oh yeah, and today at our SB mom and baby group I realized that Nick will probably need a wheelchair as a child. (Even if just for distance, like the zoo or Canada's Wonderland). Which shouldn't make me upset, it is something to give him control and independence. But I'm still a little raw about it. Even though I shouldn't be surprised - and we aren't anywhere near to needing it now.

So we are hitting the 18 month mark a little grumpy. A little depressed. A little sad.
I don't want my baby to grow up. Can't he stay the same age for a little longer and then catch up? Let the Nick timeline and the calender timeline sync just a little?

 At the same time, I know that today I might be sad. Today I might be under my own little rain cloud. But tomorrow Nick will do something fantastic and the sun will shine again. And Nick doesn't think that there is anything wrong with some rain!

BTW - the pictures are from our trip to the Toronto Zoo on Easter weekend.

Tuesday, May 3, 2011

Nick's new wheels!

Nick got himself some shiny new (plastic) wheels for Easter!
It's some kind of smart trike? It's good for kids 8 months and up. It comes with a complete 5 point harness and a bar around them. As well as a parent handle, sun shade and a bar to rest their feet. It is a 3 stage system.
Nick is obviously not ready for an actual trike, but Katheryn has her trike and I really wanted something for him to be in too.
One day I was at store and saw these things!

So now he's up like a big boy, in his big-boy bike! (And mommy doesnt' have to worry about him losing balance and falling off).

Katheryn was helping him with his feet (they aren't long enough to reach the peddles yet - and I don't think he'd know what to do if they were - but there is a bar to rest his feet on).

And the parent handle maybe should be a 'Katheryn handle'. She loves pushing him around in it too!
"Nick wants his bike"

Of course Nick is already getting into some dangerous driving behavior! I think his sister is a bad influence!

Drinking and driving !

Street (Hall) racing!