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!

Wednesday, February 17, 2016

Botox Day

Nick had his botox today. So it was back into the operating room. But really, I have been trying to use the language "procedure".

We actually had an afternoon appointment this time. So we spent some time waiting and distracting Nick from him empty tummy



When it was time to be checked out by the nurse Nick was very serious.


Pretty soon it was time to get ready and go in! We were actually an hour early


We got some funny faces before heading inside.
I got to go with him, and be with him until he was asleep. He started to get nervous with the mask on his face (which we have practiced). But no tears before he was asleep and I left.


It took about an hour. Kyle and I went to do some window shopping and eat lunch. And we were just on our way back up when we got the call that he was done.
Dr Lorenzo came out and talked with us. He did do the deflux, but isn't sure whether it will stay or not.
Nick was beginning to wake up when we got into the recovery room. He sucked back his drink and woke up really well and pretty soon it was time to head out.


Nick wasn't very happy when we were leaving, but not pain. Just grumpiness. He really wanted to eat some fried macaroni and cheese. But we didn't think that was such a great post-anesthetic meal.


Now we just have to wait and see how it works!

Friday, February 5, 2016

MRI: Aftermath

Nick had his awake MRI yesterday.
He was so brave!

But it was difficult for him. We practiced and watched the videos that I posted. We talked about what we were doing and that it wouldn't hurt. That was Nick's concern, if taking the pictures would hurt.

We got there really early to miss traffic. Our appointment was 545 in the evening, which means that we are more likely to be bumped by all of the emergencies through the day. That was ok, we brought books and toys to distract us.

We saw the waiting room empty and then start filling up again. I asked a couple of times if we could have the gown for Nick to change into, even if it was early. Apparently I asked at shift change and no one passed on the message. When I asked again they said they were delayed (which I completely understood), but I said that I wanted to get Nick ready early because it will take us a long time.
Even so, after we struggled to get in and out of the non-accessible bathroom we had 3 different people try to open the door (why no one knocks anymore, I have no idea).

After a while we were back to waiting. And then it was our turn.
Nick was a little bit nervous going in, but he had his brave-face on.


We used his wheelchair so he had the most mobility until we got to the room. Then I carried him onto the bed. I completed a similar MRI questionnaire before going in with him (for any other moms who read this, one of the things that was on the list was an IUD device, luckily the answer was no... and if you don't know what that is, it means you don't have it).

The MRI tech asked if I had a book (which a did... an e-book, which of course can't come in). His head went into a cage thing to keep it still


They gave him some video glasses to watch a video. But the earmuffs wouldn't fit in the cage so they gave him some earplugs instead (#1 thing I would change)


Then they told me that I could sit in the rocking chair set up a couple feet away. (#2 thing I would change) I got some earmuffs but could still hear the MRI, but not much else. They had 2 fashion magazines that I flipped through while waiting. I have no idea who long it took (probably about 45 minutes) but all I could see was Nicks legs and feet.
Occasionally they would say overhead they just needed a couple more pictures and to try staying still.

I could hear this noise that I thought was part of the MRI, but it ended up being Nick crying. They stopped because Nick was moving too much for one of the pictures and they took him out of the MRI. Nick was sobbing and all red. I was heartbroken.
I sat him up and we uncovered him, and he said he would try again.
I stood right with him and touched his legs and feet so he knew I was there, but I could see how hard he was working to stay still, but he was still heaving and crying. (This was pretty much all I could see ... not my photo)


So we stopped. They said there was another machine we could wait for if we wanted to try again for the last series of pictures. So after about 1 hour at this MRI machine, Nick said he would try again in another machine and we went back to the waiting room.

After about 15 minutes we were ready for the new room. This time I stayed with Nick the whole time, they had Antman on the TV (they were worried it was too old for him, but it was Avengers and he's watched it before). They also made sure they could fit the ear plugs and the earmuffs on.
He was so brave and stayed still the whole time! About 15 minutes of pictures


For being so brave Nick got a game and a blue freezie!
Then we got to change into his new PJs (storm troopers) and we were out of here! It was about 9pm.


 Nick later told me that his head was hurting "so much" because of the noise, and that he forgot that he could say something in the microphone. He says that he doesn't want to do another MRI for a long time, or at least until he's 8.

Some things that I would definitely do differently.
Headphones. He needs the earmuffs, not just the earplugs. If the earmuffs don't fit, we need to problem solve and find a way. It is too painful without the earmuffs.
Stay right with him. That's nice that there is a chair over in the corner, I'm not here to sit in a chair, I can do that in the waiting room. I will stand and touch Nick so he knows that he isn't alone.
Practice using his voice. Practice being loud to say he was scared, or it hurt or he needed a break.
Bring a paperback (because standing/sitting there for 1 hour and not doing anything was really boring... I read all of the articles in the fashion magazine)
Hope that in the next 2 years (which is hopefully the next time we will need an MRI) that Sick Kids will have made their bathrooms in the MRI department accessible (no more struggling with doors)


We see his neurosurgeon in a month to follow up on the results

Wednesday, February 3, 2016

Parasport - Karate

Nick had his first night of Parasports. It is one night a month when PT and OT organize a group of kids to try a different parasport.
We missed the first month, they did wheelchair tennis.
But this month it was karate.

I didn't get to go (I was working), but Kyle and Katheryn went.
Kyle said that this is how Nick spent most of the time


But when I asked Nick about it, he told me that he liked it

 They went through a defensive and anti-bullying program.
Nick has been interested in martial arts because Katheryn does it. It would be really interesting if Nick could do it as well!


Tuesday, February 2, 2016

Grandview Ambassador

Nickolas was a Grandview Ambassador at his school this year!

Male student with is walker wearing a Grandview Kids Day t-shirt

He got to wear a Grandview shirt and go to all of the classrooms and collect their toonies for Toonie Tuesday. He also got to make an announcement to the whole school.
He didn't want to talk by himself, so Katheryn came and talked with him.

This is their script
Nick: Hi. I'm Nick. Grandview helped me learn to walk with my walker. I wanted to walk like my sister.
Katheryn: Thank you for donating a toonie to Grandview Children's Centre. I am so proud of my brother. The money will make a difference in helping other Grandview Kids.

They sent some black and white pictures home, but the above picture was posted on the school board site.

Saturday, January 23, 2016

Helping in the kitchen

Nick has wanted to help more in the kitchen.
So we decided to start with his favorite food. Meatloaf!


I tried to get his hands all in the meat. He didn't really like it and wanted to go back to using the spoon. Nick helped with everything (except loading into the oven)

Nick was so proud of himself and ate everything.
He can't wait to do it again!