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!

Tuesday, July 30, 2013

Keeping Busy

We are half way through the summer, and it has not been a waste.
These 2 kids have been busy! busy! busy!
With cottages and parties, lots of kms on the car this summer!
My house I don't think is too happy with it's upkeep. But with faces like this... who cares!

We finished all of our therapies (PT/OT/ST) for now, and it is just waiting for ... gasp ... school to start before figuring out the next step for Nick.
He doesn't really know what school is about. I'm a little more worried for him than I was for Katheryn, I hope he will adjust well. And that stubborn streak (no you say what the letter is) will hold off enough for him to learn and have fun


I have 2 fishes now!
When we are up at the cottage they want to be in the water the whole time!
Nick still likes it shallow

Katheryn is starting to get more brave (even thought it doesn't look deal - you still have to walk a fair ways out to get to that level)

And she's so much more interested in swimming back!
We had swimming races, and since the water is so shallow my swimming turned into some really sandy knees

The craziness is never that far away!
The kids are drying themselves with the fan (Katheryn is behind starkers) playing model

I think they are really enjoying the summer so far

And Nick is always on the move - with whatever he can get his hands on!

Those canes were such a great idea!

Friday, July 26, 2013

Our next challenge

So i thought that we were ready for our next challenge...
Which meant a shopping trip!

I wanted to make it a big deal. While hoping I wasn't setting Nick up to fail. But hey! Why can't we explore underwear options! Yes I said Underwear!
Nick got his choice, of anything that said 100% cotton (instead of spandex mix).

And they kids were not as excited as I was.
The next weekend we were home all day (no running around) and so I thought it would be a good opportunity to try them out. He has been dry all week and clean. I looked at some different options to control the leaks he is still having, ended up with a little maxi pad for a trial

So it was time.
To put away the diapers and have some real underwear on

Happy Face!

The diapers don't really bother him (yet). A lot of it is me. And I recognize that.
I really dislike the diaper flap that comes out the back of his pants. I fold them down and around and it works, sometimes. But it just screams "diaper" to me and I don't like it.
See - no diaper flap!

But we live with it, and like I said Nick doesn't really care. He calls his diaper his underwear and no one is allowed to say that only babies wear diapers.

At the end of the day it was a Mommy-Fail.
It was a cleaning the basement day (while the kids played) and the 'I'll only work on one little area' before potty time turned into an overflow and a change of clothes.
Nick didn't really seem to mind/notice except it was no longer a PJ day.

So now I'm hesitant to do it again.
It drives me crazy that pee was never ever the issue. He didn't leak and had a large capacity bladder, but poop was the issue. Now we have poop handled (knock on wood) for 90% of the time, but we have little leaks (or big ones if we go too far past cathing time).
I bought some poise pads to hopefully help, but I don't want something bulky either.
I think I'll try again, but I don't want to set him up so he feels that he failed.
So for now it is balancing the line between diapers and underwear.


Wednesday, July 17, 2013

An anniversary I don't care about

It's been 4 years and I don't care.

The heartbreak has faded, the world is aligned. The anger at the obstetricians has dulled. Our lives are in focus, our faith in each other restored. The grief is gone, and the 'why me' has silenced. There might be some twinges that come and go, but not today.

I'm not looking back at where I was 4 years ago on D-day (diagnosis day). In fact I probably would have completely forgotten about it (it was yesterday), except that I'm planning and thinking about what to do for my birthday and realized that it must close.

I have blogged about my thoughts every year on the anniversary.

1 year - http://www.riddingfamily.blogspot.ca/2010/07/one-year.html
2 years - http://www.riddingfamily.blogspot.ca/2011/07/2-years.html
3 years - http://www.riddingfamily.blogspot.ca/2012/07/3-years.html

I still think of the subway ride home, sitting at the stop light, and the experience of an ultrasound where you know there is something wrong, but don't want to hear the words. Those memories will always be with me. But the pain is gone, it is just a memory, a flicker.

So it has been 4 years since we first found out that spina bifida will be a part of our lives.
And it doesn't matter.
It's a part of our lives, it always will be. I will continue to work on educating people around me, advocating for my family and enjoying the love I get to experience.
In learning about the stages of grief regarding perinatal bereavement for my professional education, I can recognize the symptoms that we experienced after the diagnosis. It was odd to realize that the charts they showed us could also apply to what we had experienced after our diagnosis. It's difficult to recognize that we were grieving, and at the time we didn't really identify with this term because we were also celebrating our child.

There is no grieving here.
Love, laughter and a 3 1/2 trouble maker and his sister.
Just like every other day.

Sunday, July 14, 2013

Just a Sunday

The kids got up early and started to distract themselves

It's taken Nick a while to get the hang of blowing bubbles. But Katheryn is helping to teach him!

Of course we had some costume time (look at him showing off with only one hand on his cane!)

And because we saw Monsters University yesterday.
The kids wanted to practice their scary roars!

Saturday, July 13, 2013

Movie Goers

So today was the big day!
We were going to the movie theatre for the first time!

The kids were super excited!
Not sure what they are doing the silly wave - But Nick thinks it's super funny to do everything Katheryn is doing

I even got our Access 2 Entertainment card out, that we have never used (usually because I forget about it), which allows a support person in for free (or in this case Nick's ticket was free - which I totally understand because he's a kid and of course he has to have an adult). We got something for free - so yay! Just showed the card and that was it (the wheelchair probably helped)

Getting the kids ready for the movie we talked a lot about what it would be like.
It will be dark, the sound will be loud, you can't talk, you can't kick the chairs in front of you, there are going to be people around that you don't want to disturb, you have to pee before we get in.
But there is popcorn!
The theatre is accessible, no problems there.
There is a wheelchair section in the front (but we didn't want to sit in the front), so we parked the chair and brought Nick to the best seats in the house!
The seats were nice and big, and the arm rest comes up. So Nick and I could snuggle during the movie. I was worried the sound would bother him, but he was find.
He actually slept through 90% of the movie (all snuggled up with me of course). But if you ask him, he says he saw the whole thing.
Katheryn had to leave in the last 10 minutes of the movie to pee - the giant cup of juice probably had nothing to do with that...
To top off the day we all went out for a family dinner
(Nick is getting more independent in his wheelchair)

We had a great waiter who was so engaging with the kids.
It was a perfect family day out!

And yes Kyle gave me a hard time to taking pictures all through the experience - but hey, they only have a first movie, once.

Saturday, July 6, 2013

I cane - part 2

 So they arrived.
Of course they were insanely too big. But we still tried them out.

I wasn't sure how much support Nick needs or if he would like them.
Nick talks through the whole video, and we can hear how he likes them...

"these are my new ones... the ones at speech therapy (physiotherapy) don't work, they don't work. Only these ones work... not the red ones, the blue ones. I like blue"
As he holds on with only one hand, and starts to dance!
So then we had to figure out how to adjust them to fit him.
So Kyle took some measurements, took the canes, cut them down, made new holes and got them fitted better.
Nick took one look at them, grabbed them and started to go!
This was about 1 minute into his first time using them like this!
I was so surprised and happy that he got moving so well that I didn't pay attention to anything else.
Look at him walk! And count and dance!
Now that we know he can move with them (alone and without adult assistance) this opens up a whole world for him.
It will not replace his walker, but it can go places the walker is too bulky to go.
It can attach to his wheelchair and go with us. So that when we are at the zoo or the park he has freedom (and off his knees)
I was so excited when we went to physiotherapy!
But when we were there he was leaning over the canes like an old man. Not very ergonomically correct. They have already had concerns about the pressure the canes will have on his wrists (which was why we had thought about the forearm crutches).
So I have to keep an eye on it.
And it is lousy that we are now done physiotherapy until school starts in September.
But it's only been a couple of days that we have had the canes.
I am so excited! He is so excited! Everyone is excited!
He can(e)!!!!!

Wednesday, July 3, 2013

I cane - part 1

I feel that it is time.
Time to challenge Nick, explore some additional options for walking.
Originally Kyle and I discussed forearm crutches, both amongst ourselves and with our physiotherapist at Grandview. And then when we had our spina bifida clinic and mentioned them we were greeted with a lot of negativity and I was thinking that maybe this wasn't a very good idea.
I had thought that forearm crutches would be more stable in the upper body for walking. But physiotherapy at Bloorview brought up the valid point that you are looking at a small bottom to balance on, as opposed to a large base of a quad cane.

So then we went back at looking at canes. Canes are not new. We used them for walking in conductive education in April 2012 through to July 2012. This is the video from Nick walking with them.

This was a year ago and I knew that Nick would be better with them this year!

In our current block of therapy, which is also our last block before moving to the school program, we have discussed a lot of things (including canes, crutches and bike) all fit into about 8 sessions, half Kyle went to and the other half I went to. It seems that every time Kyle went, they had some quad canes, and he didn't take any pictures or video, but from what Kyle told me, he found the quad points too cumbersome.

(I'm not sure why all the google pictures I can find are pink).
So I spent a lot of time searching online for some pediatric sized canes with or without the quad bottom, because I found the quad bottom at our medical supply store (except it needs a specific sized tubing).
Through physiotherapy they contacted a couple of medical supply places, but no one carried the pediatric sized canes. Looking again online they seemed to be priced about $60-80 per cane.

So we turned into a couple of do-it-yourselfers!
Kyle found some small adult quad canes for $30 each and ordered them.
They arrived this past week...