Creativity

The SB&H had a contest this year for the 2015 calendars. Calling all child artists!

I heard about it in January and thought how cool it would be for Nickolas to submit something.

I've been trying out different create projects for the last couple of weeks, but Nickolas has not be very interested in doing more than drawing a line or just scribbling.

 

So I pulled out our paints and paper, stripped the kids and let them go

 

 

Hands are fun, so we coloured everyone hands first.
Mixed up some colours, it is going well...

Then we were drawing something that was fun to do.
This was Nick's favorite thing to do when we were in Punta Cana. The sun, sky, clouds and the pool. This is the most Nick has ever drawn for me before.
I think it is a masterpiece!

Katheryn had a lot of fun drawing Easter eggs and rainbows.

We didn't finish anything in time to submit for the calendar. I didn't want to pressure Nick and he wasn't all that interested. So when we were done, I put everything flat to dry.
6 weeks of trying and 1 scenic picture by Nickolas was a success (and Katheryn loves any excuse to get out the paints).

Olympics

It's time for the Winter Olympics again.
I have been very excited. But I missed being able to watch it 24-7 like four years ago. But work has been getting in the way.
Four years ago Nickolas was just 3 months old, and there was so much I worried about, that I didn't know I didn't need to worry about. And whenever I think about
I will always, always think about Alex Bilodeau and his brother. Putting things into perspective. Having a role model: his brother.

So here we are four years later and cheering on our Canadian Olympians again.
We had a medal count down on our wall. We talked about the sports we were going to watch and cheered them on!

Katheryn's favorite sport is the skeleton and curling. So we decided to practice...

Skeleton (she's smiling on the inside...)

Curling (she's pretending to hold the broom, and the ice is the curling stone.

I asked about hockey, and she says that hockey is just 'ok'.
But Nickolas really likes hockey. And he wants to go skating too.

 

Nickolas has been wanting to go skating. On skates. Like Katheryn (who hasn't actually skated on skates yet either). So we've been staying away from the skating ring for now.

Right now it's just enjoying the snow (which Nick likes for about 5 minutes anyways)

 

Reading and Kids Books

I like books.

I read all the time, and I'm encouraging the kids to read as well.

Katheryn has been bringing home 'borrow a book' that she reads every night. You are supposed to read it to her the first night, but we usually just give it to her and she reads it.

Nickolas has been bringing home a book too.

He needs alot of encouragement, but he can read the book too. He cries and he says can't read it, he wants me to read it. Some days he'll read it, some days he won't.
But I know that he can.

But reading isn't all about work. I read to the kids too.

Since we have an hour of time every single night we have a whole collection of books that are in our bathroom. The 24 books we opened for our book advent gave us a really good base to start from.

But 2 weeks after Christmas when we were still reading about Santa, I needed to pull out some new books. I kept the wintery ones, but put the Christmas ones back on the shelf. This is our current collection.

I pulled out our ability books to read. Books that talk about spina bifida or hydrocephalus specifically. Nickolas really likes these ones and I'll read whatever he wants me to. Our collection has grown through the Spina Bifida and Hydocephalus Association of Ontario who give books to members. And I'm always keeping an eye out for new books.

 

Wally the Wheelchair is about a child's wheelchair and from the perspective of the wheelchair. The wheelchair has a name and the little boy is finally able to move fast in it. I had thought that this book might help Nick like his chair more. Nope he wants us to take his wheelchair back to the hospital to give to another little boy. He is not interested in naming his chair at all.

Zoom is probably the most popular book. It's about a girl who is trying out different wheelchairs and wants the fastest and biggest one there is!

Isaac's Back Adventure is about a little boy's back and all of the things that they do together, including going to the beaching and fighting an evil monster 'lipo'

Lemon the Duck is about a duckling that needs some extra help to move around, and a group of students who work together to make that happen.

 

Detour Ahead of a medical book made into a children's book. It is a about a little boy with spina bifida who has a shunt malfunction and surgery. I didn't think Nick would like it, but he does. It allows us to normalize his shunt so he is just like the boy in the story (only without the malfunction)

 

Just Like Any Other Beagle is another medical book made into a children's story (actually both are written by nurses I think). It is just about hydrocephalus, and a doctors visit to check his shunt. But he can still do everything all the other doggies do.

 

There is a whole collection of kids books. And I'm always looking for more. This is a good link http://www.sbhao.on.ca/programs-services/youth/kids-resources

 

I'm still looking for the perfect kids book! I'd love to hear of any other recommendations

A change in Ditropan

We have been giving Nickolas oral medication every single day, three times a day for 1,262 days.
But not any more.

Oxybutinin, Ditropan

This medicine helps Nick's bladder from spasming and over-working and becoming tough and thick and misshapen. He needs it. It helps to keep him dry.
That still doesn't make me happy about it. It is not approved for use in children under 6 years old.

Right now Nick hasn't been dry. I'm not sure why or what is happening.
When we saw urology in December I said this was happening and as expected he said we could increase the dose. When we increase the dose we increase the side effects.
Constipation
Over-heating
Blurred vision
Drowsiness
Dizziness
Headaches

Other symptoms I have heard from parents include night terrors, hallucinations, mental or mood changes, confusion, irregular heart rate.
And I am giving this medication to my little boy.

So every time I talk to them about the leaking, they want to increase the oral dose, and I ask about alternative ways to give the medication.
And this has been going on for a couple of years.

Well in December we got the OK for an alternative route. A patch.

 

Yay! a different way of giving this medication. Which also reduces the side effects.

And why didn't we do this before?

I think it is weight-related. Nick is the minimum weight.

 

It goes in one of 3 different places. Bum, hip or stomach. It is ok to go over scar tissue (bum), or areas with decreased sensation (hip), and it shouldn't be exposed to sunlight (stomach in the summer). It does not contain latex.

 

From the picture it looks so small. On a 4 year old it does take up a significant amount of space.
So far we have tried out the hip and the bum. the issues that I have had so far is that the hip rubs against his diaper and attracts all the stickiness from his pants. So we moved it to him bum, and it sticks a bit to toilet seat.
It hasn't come off by itself, but it does not sit completely flat against his skin. I guess that is just how a patch works.

I have noticed that Nick has still had some leaking. But I'm hoping it will even out after we've been on it for a bit.
It is a change in our routine. And a good change.
No more
...Forgetting about the middle of the day dose
...Being out of the house when it is due and forgot to put it in our bag
...Spilling bottles, leaking syringes, spraying it all over, or trying to give it to a sleeping child
... First thing in the morning thinking: did I already give it, or do I have to give it?
... Being away for a couple of days and realizing with a sinking feeling that you forget the medication

One patch and forget it.
Now I just have to stop reaching for the bottle that isn't there every day!

Holiday and thoughts for 2014

 It is the time of the never ending holiday and lots of family time (I've been off of work for a week)

So that means a search for some really cool matching outfits

Looking at my beautiful children and how happy they are helps to push that boogie man under the bed.

You know, the one that you can imagine that you don't have to face when you see how happy your kids are

Why can't it stay like this?

Why does this funny-faced little boy need to try so hard to do things?

Why does this funny little girl need to feel that we pay more attention to her brother than her?

Surgery is one of my big boogie-men
And I'm not sure if 2014 will bring any surgeries (I can imagine a couple of potential ones that are always in the background, TC or ACE/mitronoff or of course the shunt), but right now I can't imagine handing this little boy over to a surgeon. I'll scream and shout and cover my face lalalalalala.

But even if it may not be in 2014, it will still happen, one day.

I think that this will be a tough year for Nickolas. The year of realization.
We've had some tears and some heart breaking crying
When Katheryn got skates for Christmas, "I want to skate" (even though he doesn't really know what skating means... or like being cold)
"I hate my wheelchair, bring it to the hospital for someone else"
"I don't want to walk, carry me"
"I can't..."
"I don't want to..."

And I just hope that I'm dealing with it all the right way

But I also know that this year is going to bring some great things for Nick.

He can count to 39, write his own name (and not just NICK, but goes all the way to NICKOLAS)

He's saying "I want to do it on my own" and knowing Nickolas, that is the key!

We are working with his PT on some crutches

This is not how I imagined this post to go. I thought I'd just show off lots of cute pictures, and then it just got away from me.

But all of these things go away for a little bit more when my kids snuggle up, wrap their arms around me and we get a big huge family hug!

Take that boogie man!