A Day on the Town

After Nick's hospital appointment we decided that we would continue with a day on the town.

When we go downtown I walk up and down from Union Station to Sick Kids. But today instead of train-hospital-train we were going to have some fun.

First stop, hot dog stand!

Nick really wanted to go up the CN tower and see the city

We got to ride up in our own elevator, they let us skip the line. I think it took about 90 seconds to go up 114 stories

Unfortunately the weather wasn't that great, so we couldn't go out on the observation deck or up to the highest observation sky-pod deck (which would have been free for Nick and me).
You couldn't see a huge distance, but enough to make Nick happy (on a clear day you can see all the way to Niagara Falls, and we can see the CN tower from home in the opposite direction)

We could see the Toronto Island airport, and watched 2 planes take off

We waved to Emily and Hannah in Brampton!

Then it was time for the glass floor! (It is a couple of floors down)
Nick was very excited to sit on the glass floor (me... not so much)

 You lie down and all that is between you and the ground is a layer of (very thick) glass, and 1,122 feet

 We took a selfie together!
(See how I'm still sitting on the carpet)

But Nick wanted to take his wheelchair out for a look too

 There are signs around saying that the glass is strong enough to hold an elephant. So I know it can hold my ___lbs of weight... But I still had an issue with stepping onto the glass
(The 2 swimming sharks are the aquarium at the base of the tower)

When we were ready to go, Nick liked looking out the elevator and seeing the buildings get closer and closer

Nick had a FANTASTIC day! Much more fun that just plain visiting the hospital and go home or back to school!

And of course we got a souvenir of our trip flying around Toronto

MACE checkup

 We had our follow up with our doctor for Nick's MACE.
So it was a day back at Sick Kids
Nick was excited to go to the Hospital (a feeling I want to keep). I had in my mind what I wanted to do (deal with the granulation tissue). But the MACE itself is great and we are so happy with it!

Well, it didn't go quite like I had in mind. The doctors looked at it and said it was healing well, that it was cosmetic and will eventually improve. This was not what I wanted to heal. I really wanted to do the Silver Nitrate to get it all healed up now.

The doctor listened to me. Dr Lorenzo is great (and as he came very well recommended to me, I recommend him to anyone going to Sick Kids). But in the end he explained why we would`t be doing it.
To try to heal the granulation tissue (with the silver nitrate) there is the risk that we would heal too much, or in medical terms stenosis of the stoma. So the actual MACE stoma may close. I do not under any circumstances want the stoma to close and have to redo the MACE.

Actually looking at the belly button. It does look better than it has in a while. So we will keep doing what we`ve been doing. Using the Milk of Magnesia, tea tree oil and keeping it open and not covered (and keeping Nick`s hands away from scratching at it).

We are cleared right now, and will continue to follow up with the urology clinic at Bloorview.

Our heartfelt thanks and gratitude to Nick`s health care team for our great experience with the MACE. Dr Lorenzo and his NP Abby!

Ninja Turtles and Speech Therapy

Who knew that Ninja Turtles can have such a great impact on speech.

Nick has been taking speech therapy to help with a number of letter sounds.
Remember that this is the boy that didn't speak more than 10 words until he was 2 years old.
While Nick's speech did explode (around the time he got his first wheelchair), he has consistently had difficulties with specific sounds.

He really doesn't want to practice sounds.
"I already did that"

The big ones have been L and K sounds.
We've been looking at ways to get Nick to continue to work on sounds without getting frustrated.

Leonardo Loves to Lead
Let's go!

"K"owabunga!
MicKey
ChucKs
BooyaKasha

I talked to his speech therapist from last year and she said how well Nick is doing and just spontaneously making the right sounds.

I guess, like everything, Nick has decided for himself what he wants to do, and so he's doing it

Trick or Treat

The big day had arrived!

It started early, because the kids are able to wear their costumes to school (at least for another couple of years).

Katheryn is a beautiful (and original) Elsa at the Coronation, complete with hair and tiara, gloves and cape.

Nick of course is Michaelangelo. Complete with interactive Ninja turtle gloves

And while the kids were in school, I got to makeup my Olaf costume

I brought Nick's walker costume to school, so he could use it in the Halloween parade at school. He was posted on the Grandview facebook page with his costume so that everyone associated with Grandview or Campbell's got to see him!

When the kids got home from school it was time to get all ready for the night.
Our pumpkins were set out, along with a bowl  of candy (and note) and we had a Ridding-cousin date for Trick-or-Treating.

Of course it was wet and rainy, but my snowman didn't melt

Of the 6 Ridding kids, including snow queen and coronation Elsa, a ninja turtle, Spiderman, Buzz Lightyear and a pirate

 We didn't actually see many Elsa's on the way. When we were planning our costumes and Katheryn wanted to be Elsa I was hesitant. But when she said she wanted to be coronation Elsa (not Anna as everything thought she was without the hat) that was something we wouldn't see

I think because a lot of the Elsa snow costumes weren't available every parent had to get creative, and it was very interesting to see how all of the Elsa costumes were all made up

I am going to say that Nick was a little bit of a big deal. Sure he was always at the back of the pack, and had to work to get up the driveways sometimes, and got tired after 20 or so houses (at the same time Katheryn really needed to use the bathroom).
But we were stopped by 2 families with "Hey I know him!" Considering we weren't even walking in our own neighborhood, it was kind of funny.
Once was with Stefanie and her family (another spina bifida family) and another time was at a house of someone who saw him on the Grandview facebook page.

After the kids got tired we all headed back and got some family photos.
Olaf and Elsa

Michaelangelo and Raphael

And the whole family (with everyone eyes open and smiling)

Katheryn mentioned how much she LOVES Halloween! And already talking about what she wants to be next year! I think after working on costumes in all of my free time for a month, I'm ready for a bit of a break, until next October!

Pumpkin Time

This year we somehow ended up with 8 pumpkins

8! To be carved in one night

I had a couple of unusual pumpkins, including a white one and a green one. I thought the white one would be perfect as a ninja turtle. Cut out the eyes and mouth, scrape off the mask, it will be the perfect Michaelangelo!

Until I started to actually cut it out and realized that the inside was green!

The kids really wanted to get involved this year.
Both kids said that they wanted to get all of the guts outside, except they didn't actually want to touch the seeds.

So Kyle and I took over that job.

We had all of the child-safe pumpkin knives and the kids had all of these ideas for faces so we let them go.

The night had lots of fun and laughs (x8)

Katheryn had her masterpiece

And Nick had his pumpkin too! (He really wanted the little one)

And I had my favorite too

We are all ready for Halloween!