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, January 17, 2014

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.
Blurred vision

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!

Sunday, January 5, 2014

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!

Friday, January 3, 2014

Brr It's cold outside!

One of the great things about spending a couple of days at the cottage, is the snow
Katheryn has been dying to go outside and play in the snow!

So we all bundled ourselves up, got out the sleds and were all excited to go!

Even Nick wanted to go and play in the snow

For about 5 minutes

We had the sled all ready for the kids to go in.
But the snow didn't let anything slide on it.
So there was snow-trekking

And snow throwing

And burying mommy

Katheryn didn't mind the cold at all

But pretty soon this face was coming out (this picture is from new years)
He didn't want to go out on the sled, or play in the snow

So we went in for some promised hot chocolate!

And Nick watched the rest of the play from here
And was happy about it

Believe it or not, this -19C day was the warmest of the week!
On our day we went home, this is what we had in the morning!

Wednesday, January 1, 2014