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!

Sunday, August 31, 2014

Last of Summer Vacation

We spent our last week of summer vacation up North.
We spent 4 days at my parents cottage on Kushog Lake, then went to Kyle's mom's cottage on Orr lake for the last 3 days.

It was fun and relaxing and hopefully not too boring for the kids.

Nick loved the lake and the swimming. It is a deep lake (and cool)
All he wanted to do was swim, swim, swim.

Most of the days we swam together, but right away he wanted to swim from dock to dock with me.
He said to me "Mommy, I can't walk by myself, but I can swim by myself"
So that is what he did. Swim, swim, swim. When he would get tired he would swim holding onto my hips (we tried holding onto my shoulders but he is more likely to push my underwater)

Katheryn was excited to be swimming too.
Because the lake it deep she had to have her floaties on at all times.
(And even if it seems that Nick is off swimming by himself, I was close all all times)

We also did some rock-collecting.
When I was little we used to walk along the road a collect Monarch caterpillars. But with the climate change we don't see very many Monarch caterpillars anymore. They are starting to come back and I had hoped we would find some, but we didn't. 
But we were able to find some nice round rocks

I painted the rocks for Nick. Ninja turtles of course!
Nick didn't really understand (or want to understand) that he couldn't play with them. Everything is ninja turtles for him.

We also played some soccer.
Nick really liked that he could play with Katheryn. He can kick the ball and it will actually move!
Katheryn played goaltender for a while.

The dock is one of those no-no places. Yes Nick's walker could go down it. Would it make it down it without going off the side.
So there is no going  out on the dock without an adult (and/or floaties)

But we can take a minute for a nice photo

Katheryn and Nick were all ready to go out onto the dock now

The water was cool some of the days (70F). We went swimming a couple of the days, but this was as close as we got.

We also took Nick's new canes out and made him walk with them. He wasn't happy, but this was how he could move around.

Katheryn loved the swing set and trying new tricks.
She is even jumping off the swing (while swinging) as well

After a couple of days we moved cottages and got to meet up with Daddy as well.

We spent even more time in the water and with family.
Hayden, the kids 3rd cousin was at the new-cottage and they played together all the time when we were there.

After a relaxing (or exhausting) week away it was time to go back home and get ready for school!

Our summer was super busy, it seems like we were always on the move and doing stuff. No one got bored and once we got the all-clear that Nick was healed we were off doing more stuff!

Thursday, August 28, 2014

Christmas in August

Merry Christmas in July!

During our last week of summer vacation we went up to the cottage and visited Santa's Village in Bracebridge. It was all kid friendly and completely accessible. My parents came with us.

There was some carnival games, winner every time

A jumping castle (I let Nick go in only when there weren't any other kids in.. it got crazy with lots of kids in it)
Katheryn loved doing flips

They had an ornament ferris wheel, so we all went up on that.
I wasn't sure how the kids would be with the height, but they were good!

There was an area to take some Nick Christmas pictures on a sleigh with presents around.
The kids weren't that interested in smiling, so we did some funny faces instead

We got to meet Santa Claus and tell him when they wanted for Christmas. They got elf hats at the same time! Nick was very excited to meet St Nick ("just like me!"), but once we got up, Katheryn didn't want to go near him and hid behind me.
They were very interested to meet Mrs Claus too!

Katheryn's favorite part was getting her face painted. She is Hello Kitty, and Nick is ... of course... Michaelangelo

We got to play some mini-putt. Nick really wanted to do this.
The course was not accessible at all, but we made it work. We tried all kinds of different ways to help Nick hit the ball. The wheelchair was too bulky, the canes were too flimsy. What worked in the end was me standing behind him, holding his hips so he could move himself around and had the space to swing the golf club.
We did all 9 holes

We also rode a train through the whole park. I think we did it 5 or 6 times. This was my mom's favorite part. We rode in the front, in the back, in the middle. The guy even let both kids sit in the drivers seat (he only let Nick do it first, and then I think realized that it wasn't fair to Katheryn and let her do it.)

While Katheryn was off doing something, Nick and I snuck away and did some gingerbread men.

Finally at the end of the day the kids wanted to go on some rides. This was Nick's favorite thing to do, the plane when up and down and around the track.

It was a fantastic day!

Sunday, August 17, 2014

Pool Party Reunion

We had a Spina Bifida Family Reunion!
Our group of families who originally met when our kids were itzy-bitzy and we were all just learning about spina bifida. We started going when Nick was 4 months old and went until they cancelled it 2 years later.
After the program was cancelled I created a FB group to try to keep us in contact at least (and the group has grown to include anyone in Ontario called Our Lives, with Spina Bifida in Ontario)

Of course it isn't all about our kids who were born with spina bifida, it's the siblings too.

And the adults.
Katheryn wanted to get a picture of everyone taking a picture of them!

Afterwards everyone was in the pool!
I can't rave about these puddle jumper floaties enough. Nick just loved swimming around everywhere.

Katheryn wore her floaties as well (she doesn't really need them) her swimming is great, she just needs to increase her confidence with the swimming.
She did show off her cannon balls!

They had a fantastic time in the pool, and playing on the 'boat'

Here are all the kids together, and the siblings were around in the pool

Nick's MACE was fine in the water. I didn't cover it, and he showed it off to everyone. 

They weren't that happy when it was out of the pool

We all had a great time catching up and seeing how everyone kids are growing up.
The adults had time to catch up and talk about everyone's new adventure (mainly starting school) and everyone wanted to hear about Nick's MACE and how it was going.

It was great gettting together with everyone, we definitely need to do it again! It's great for the kids to be around other kids just like them... our kids with spina bifida and the siblings. When I talked to the kids about the party I stressed that it was for both of them!

Thanks to Chris and Meredith for hosting! And making all of that fantastic food!

Friday, August 15, 2014


Nick continues to heal.
I got the all clear from clinic today that things are healed, no infection, everything is working and we got cleared to go swimming!

Before the surgery I really wanted to know what everything was going to be looking like. So I have been taking pictures of Nick's belly button to show how everything has been healing. If you aren't interested in seeing a whole bunch of belly button pictures, feel free to skip this post.

Day 7
It's starting to heal. I think the catheter was irritating it.
As it has been healing it has been having some discharge, pinkish. So I have used some gauze and taped it just below. So it can still get some air to help it heal, while protecting it (and his clothes)

Day 11
Some bruising is showing below the belly button.
The laproscopy incisions are healing well, he doesn't need any bandaids or anything on it.
Still have the tape/gauze on during the day, but it's healing well.
Still having some drainage, but less pinkish and more clear/yellow. Doesn't smell bad or anything

Day 14
I'm not sure what the redness is, I put some polysporin on. There is still some drainage and I'm not sure if it is just irritation. We have clinic tomorrow so we'll see what they say (and they said it was ok, it was less red by then as well).
Tomorrow the tube comes out!

Day 16
The tube it out, no more tape and dressings on his belly!
The redness and the drainage decreased once the foley came out.

Wow where did that flat belly and ribs come from!

This is a picture I took before the surgery to use as comparison. Nick has always had a bit of a swollen belly. I think that this shows how effective the MACE is, by actually clearing him out from the top down.

Day 19
I can't believe almost 3 weeks and it is pretty much healed.
And I think that I finally got all of the tape off! All of the tape and the bandaids have left his belly very irritated. So I am keeping everything off of him for now.

Can you tell he has a hole in his belly button?

When I go to put the catheter in, my finger goes right above the belly button, push gently and you can see the hold at the bottom of his belly button, but it is completely hidden during the day.
And Nick (for now) doesn't mind me showing off his belly to everyone

Everyone heals a little bit different, but this is how Nick has been healing. 

Wednesday, August 13, 2014

Flushing... the real deal

We had our follow up clinic yesterday, 2 weeks after the MACE.
The clinic started off kinda of weird, when the resident came in to see us and seemed to be surprised that we had been discharged from the hospital and had surgery. Um, yes that is why we are here...
I probably should have told him to turn around, read the chart and then come in and start again...

But once our actual doctor came in (with the resident) we got all checked out. Everything is healing well. There had been some discharge that I wasn't sure if it was an infection, but they said it was all healed nicely.
We will follow up again in 3 months.

Then it was time to take the foley catheter out, and show the nurse that we can do it ourselves.
I have the advantage as a nurse (and catheterizing 4x a day for the last 4 1/2 years) so I wasn't that worried about it.

I gave Nick my phone and he took pictures the whole time.

I have about 100 pictures from his perspective.
But I was able to take out the catheter, put another back in, flush it and we were done.
It didn't bother Nick at all

Tuesday night when we got home, it was time.
No more tubes were left in.

I got all of my supplies together.
The foley catheter, 60cc syringe for the initial flush, lubricant and the tube flush. 

The tape was recommended to use instead of blowing up the balloon in the catheter to keep it in place.
They said that they had one patient where for some reason the catheter twisted back into the small intestine, and when they blew up the balloon it caused pain.

The first night we taped it in. I didn't realize how much Nick moves around on the potty until we needed him to stay still. And the catheter came out. Nick wasn't very happy that his lap started flooding with fluid, but it didn't hurt him. And it was a lesson learned.
I've been using the foley balloon (why else use a foley and not a straight catheter?) and Nick hasn't been having any pain, and it hasn't fallen out.
So to add to my list above, a little 3cc syringe to blow up the balloon. After the catheter is in, blow up the balloon, and remove the syringe. When it is time to take the catheter out, attach the syringe, deflate the balloon and take the catheter out.

Another thing that they recommended was to push the glycerin in first. That will irritate the bowel to work the fluid in. So I mix 10mL of glycerin with 10 mL of normal saline, draw that up in the syringe and push that through. 
Nick really wants to do that job.

It was recommended to go slowly when increasing the volume of the flushes. So we just increased slowly over 2 weeks until we get to 350mL (+10mL glycerin) on Friday. I make the normal saline myself (using tap water) and then it goes in over 15 minutes.
Nick got some cramping at the beginning, but it seems to have settled. I slow it down if he gets cramping, but don't go too fast.
It has been so much more convenient for me, and has gotten Nick interested. It is also faster.
He sits on the potty for about 45 minutes, which is much better than the 60-75 minutes we were at before.

Nick has been a bit hesitant when I put the catheter in his belly button. The lubricant is cold and it feels funny. But it doesn't hurt and he will let me do it.
In the morning I put the catheter in (no flushing) and at night the catheter goes in and we flush. We put it in twice a day to prevent the hole from closing (like pierced ears).

Everything is going so well so far.