Happy Birthday!

5 years ago we were waiting and wondering and hoping.
Waiting for the little baby that we only knew from ultrasounds, kicks and a doctor’s diagnosis. Not knowing and too afraid to look too far into the future.

And that little baby boy was born and immediately handed off to strangers

 and whisked away to get ready for some major surgery. With only a quick cuddle.

It was a week before I could hold him again, but it seemed like the days took forever.

And time has passed,

In 5 years that little tiny baby has grown into such an amazing child.

He’s a bit Ninja turtle crazed,

and loves to... laugh and learn, he is funny and shows such a love of life and all of those around him.

For the little boy who teaches me about life every single day.

Happy Birthday to my Nickolas

Nick-angelo's Birthday Party

When it was time for planning Nick's birthday party he knew exactly what he wanted.
He only wanted a swimming party, and of course it had to be Ninja Turtle themed.

So we did both, Ninja Turtle Themed with an hour in the pool as well.

Masks for the kids (and maybe some adults)

Ninja turtle loot bags

 And a couple of games
Some bad-guys to knock down (with ninja turtle coloured Frisbees). I got old-ninja turtles and new-ninja turtle bad guys

Pin the pizza on the Ninja turtle

And a ninja turtle basketball game

We had some Ninja-Turtle food trays, and of course pizza

And a Ninja Turtle cake

Nick got to play with all of his favorite friends

Nick had a fantastic time. He got to run around and play (in his Shellraiser), go swimming, then eat pizza and cake and have everyone sing to him

And after all of that fun, he still got to open presents!

Surrounded completely by all of his friends, who each had a job to do, including present passing, card reading, music playing and garbage collecting

And everyone was excited to see what he was getting

Nick was loving it of course
(Ninja turtle Kraft dinner!!)

 Pretty soon 4 hours had gone by, and the party was over

Cowabunga!
Happy Birthday Nick!

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