Fun at the Science Centre

Here are some pictures from a recent trip to the Science Centre!

I LOVE LOVE LOVE this picture!

Nick thought it was great that there were so many of him in the mirror ball!

This was some kind of motion/sound thing.

Katheryn liked that she could make it move!

A circle hopscotch!

Nickolas had one of the Science Centre people eating out of his hand!

She kept showing him how to make everything work!

We left the water area for last.

It was CRAZY with other kids!

Fishing together!

Sorry buddy another 14 years for the real version!

Making some music

Nickolas loved the space ship!

I see astronaut potential!

Reach for the stars!

May there be Poop!

Anyone who is squeamish or not interested when they see the initials T.M.I. you might want to skip this post.

I have been looking and thinking about poop for the last couple of months.
The polite way of discussing poop is 'bowel management'.

I am so ready for some bowel management!
Nickolas has been dry between cathing for a while, so it's just poop right now.

I have dreams of getting him in big boy underwear.
I know it is just a dream right now. I know it. But I still have it.
So I've been looking at ways to get there.

I've talked alot with Julia our nurse at Bloorview, both on email and at baby group, about what we need to do, and she's had a number of suggestions. As well, our January education session involved poop talk, and we all got copies of this chart.

 I have started to record what we get and when, and how. I have a whole excel spreadsheet (that Jennifer - our daycare - has been wonderful in not thinking I'm crazy and filling out).
My plan is to try to figure out what works and what doesn't.

We have been fighting differing degrees of constipation for a while. And I'm really sick of it. I want something to clean him out so we don't have the constipation.
And of course being clean in between.

 I know this is not something that happens over night. And I know that we are super early in trying to get a handle on this. But I still want to try.

I've also been doing my research.
Through SB University and their bowel session. Also I watched a online web session with Dr Levitt at The Colorectal Center through Cincinnati Centre. I've looked all over and can't find the link.
I took notes.
They have a whole bowel management program to get kids out of diapers starting at about 3 years. (OK we aren't at 3 years yet, I know that).
Part of this program is a 1 week program using contrast and x-ray to actually visualize that what you are doing to clean kids out, actually is cleaning them out.

So we are just in the beginning of my clean-out project. I know this is going to be one of the most challenging parts of our spina bifida journey. I know we'll get lots of bumps in the road and I'm probably setting myself up for failure by starting so young, but I'm a bit impatient.

So far our experiences have been
Glycerin suppository - doesn't move anything.
Fleet (or saline) Enema - works, only if it stays in. And very messy
Julia doesn't recommend the enema because it is more difficult to stay in. She recommends going the suppository route for now.
- and after a couple of recent messy attempts that really got us nowhere, I'm finally listening to her.

Our newest line of defence, which seems to be working is another suppository. Child version (5 mg - or half of the 10mg).

Sorry again if this is all TMI, but I did warn you.

I have also been looking at getting out of the store diapers and into more cotton ones - more big boy underwear?
Not really ready yet, but these are where I've looked so far.

http://www.etsy.com/listing/72908455/cotton-toddler-boys-training-underwear

And these from Pampered Tush - Gretchen raves about them, and so they have experience with spina bifida.

http://thepamperedtush.com/gallery/cotton/trainers/

I'm amazed at the products that are out there today!

Pizza Party Fun!

The kids love pizza. And with miss-pickiest-eater-ever! we try to do things the healthier way.

And of course to make it fun!

I have never actually done the whole pizza dough thing, so I wasn't quite sure how it would turn out.

And yes I had images of me tossing the dough up in the air, but that didn't happen (or at least it didn't happen twice)

Everyone got 1/3 of the pizza, and got to put whatever toppings they wanted on it.

 I think the cheese was the favorite part!

 Done!

 Now it's time for the oven

20 minutes later and it was perfect!

Maybe a little hot still

Nick is blowing on the pizza to cool it down.

Just thought I'd share a little fun family time!
Nickolas still needs to be in his booster seat (we actually converted the high-chair to a booster seat during these pictures). But he wants to be in the big chairs like Katheryn! I'm still paranoid he'll get tired and fall out, so we are taking some baby steps to get there.

Stepping again

We went out to Bloorview this morning and got Nick's orthodics all fixed up!

Very high tech way to figure out where the AFO was rubbing. He put lipstick on Nick's heel, put the AFO on and voila! Nickle sized lipstick mark on the AFO!
So that got adjusted.
Nick also got some cool blue straps (instead of white ones).

These AFO's have given us trouble. First bruising at the top - so he has some blue padding to protect from that, then some red marks on the toes - again some blue padding, finally twice we've had rubbing on his heal.

Leslie (our orthodics guy) said that if it happens again we'll probably have to fit him for a whole new set of AFOs. I don't know if I'll be upset about that!
I actually already have some ideas for a design.

One Step Back...

Nickolas has been doing so well with is walking. Looking at him walking with those canes still amazes me! I’ve been showing everyone the videos. And when we are at home we can’t keep him off his feet! He stands and climbs over everything!

We had some issues with his AFOs in January, one of his braces was slipping off and he had a dime sized red spot on his heel. We noticed it on a weeked, So we kept them off until we could see his orthodics guy during the week. Luckily we were able to get in and see him quickly.
I can't find my post - so I guess I didn't blog about it.

So Nickolas got a break (in January) from standing and walking until we could get it worked out.

It happened again. Saturday morning he has a nickel sized red spot on his heel – same place. Same issue. This week his AFO has been slipping off. We look at his feet every night while he’s on the potty, but it wasn’t unitl Saturday morning that we noticed it.

Luckily we are able to see orthodics Monday morning (love people who answer emails on Saturdays while they are off on vacation!) So no AFOs, no walking in the walker.

I do not say no standing – because Nickolas is taking that in his own hands – or feet.

He won’t stay off them!

Nickolas has been standing without his braces for a while – usually in the bathtub of all places. His ankles are obviously weak and it really makes me cringe, but he can get up there and wants to get up.
This was taken last fall right before a bath.

He still goes over on his ankles, and it still makes me cringe – but I can’t force him to stay on the floor.

It’s hard when Nickolas is asking for his shoes and I can’t put them on him!