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!

Monday, February 29, 2016

Beaver Buggies

It was Beaver Buggy time again!
Nick has really been enjoying Beavers this year


Nick did the whole night with his crutches!
He has been getting so much more comfortable with them. And there was a lot of kids around. He was worried about being bumped into and falling, but he was able to stay on his feet the whole night


And he was all over the place


Nick was also much more involved in the crafts they had than he was last year.


He made a star wars car with a paperclip and some thimble wheels


After the crafts it was time to race
Nicks Buggy is the brown with the blue car, was all ready for the races!


It was also the fastest car!
Nick won ever single race he was in!


It was another fun night at Beavers!


Sunday, February 28, 2016

Snow Weekend

We had a family weekend at the cottage with lots of snow!
Rory was in her prime


There was lots of sledding

And rolling, down the hill


And fun inside in the warmth when we all got too cold



It was perfect snow-fort snow. Which the kids thought was the coolest thing ever!


It was the perfect place for launching secret attacks!


And of course some night time fun as well




Wednesday, February 24, 2016

Post-Botox

It is about a week after the botox and deflux and we are very happy with it!
No pain or infection afterwards, which was one of my worries.
And today we got to do something that we have never done before

Real underwear. No pad, no leaking.
Hopefully it will last!







Sunday, February 21, 2016

Face Painting

Katheryn got a face painting book and was excited to try it out!
Nick was a very willing participant



Katheryn took her work very seriously



Now we are ready for HULK to Smash!


Saturday, February 20, 2016

Our MRI exprience letter

So I am a letter writer.
After our experience with the MRI, it kept gnawing at me and so I thought I would write a letter. Not to get anyone in any trouble, but just to raise awareness of our experience to potentially make some changes for next time.
Writing it made me feel better. I'm not sure if I'll actually send it or not.


To whom it may concern,
I wanted to write to you in regards to my sons experience with a recent MRI.
My son was born with spina bifida and hydrocephalus and we have had a lot of positive experiences with Sick Kids. He has had a number of sedated MRIs over the last 6 years, but I felt that this year he was ready to try his spine and brain MRI without any anesthetic.

When we got the phone call with the information for the MRI I explained that this was our first attempt at an awake MRI and if there were any resources. I was told that there wasn’t really any way to prepare, but I could look up youtube videos. It surprised me that there wasn’t anything specific to Sick Kids, as we found the Sick Kids surgery video very helpful.
To prepare my son we watched a couple of different youtube videos, but he really wanted to know what it was going to be like at his hospital. The night before his MRI we found the MRE Tour at SickKids on youtube, which talked about the MRI and it helped to settle some of his fears.

We arrived early and settled in for an expected long wait, as we were booked towards the end of the day. I was surprised, and had forgotten, that your 2 bathrooms in the MRI department are not easily accessible (by button) for wheelchair access. So my son needed help getting in and out of the bathroom.

But the purpose of this letter is to explain our experience with the MRI and how I learned a couple of hard lessons to properly advocate for my son. When we got to the MRI room and we were getting my son settled he was very nervous, but had his brave face on. They gave him the movie eye glasses, but the ear muffs wouldn’t fit in the head cage. So they gave him foam ear plugs instead. Then they told me I could sit in the rocking chair, about 10 ft away from the machine and gave me earmuffs. I had thought I had to sit so far away because of something to do with the test.

I took the direction of the MRI tech, as I haven’t been in an MRI with my son before (but I had one when I was pregnant). I sat and read an old magazine for about 45 minutes. Towards the end I could hear a noise, which I thought was the machine. Eventually they stopped the MRI and pulled him out when they were having difficulty with a picture. That is when I realized that the noise I had been hearing was my son sobbing.
After we calmed him, and removed some of the blankets around him, he was willing to try again. This time I was told I could stand with him and touch him and try to keep him calm. Unfortunately after about 15 minutes he wasn’t able to keep still for the final series of pictures. They offered us another machine where the earmuffs would fit in the head cage, and we went back to the waiting room.

When we got to the next machine, the foam ear plugs and ear muffs with the movie playing in them were given to him, with the eye goggles. I was again asked and able to stand with him and be with him through the next 15 minutes as they got the last set of pictures they needed without difficulty. No tears.
When it was all done he said that the last test didn’t make his head hurt, and he enjoyed and was distracted by the movie.

I wanted the opportunity to share our experience. As a parent in a new environment I took the direction of the MRI techs to determine what I should and should not do, and what to expect. It was incredibly heartbreaking to know that I had been so close to my son who needed me and I didn’t even know. As they felt that foam ear plugs were enough sound blockage for a 6 year old with shunted hydrocephalus, I didn’t question it as I should have. If the MRI tech directed me to a chair in the room instead of allowing me to touch and reassure my child, I didn’t question it, as I should have. I took the direction of the healthcare professionals who do this every day.
I really feel that Sick Kids is an incredible hospital, but this particular experience did not meet our expectations.

Thank you for allowing me the opportunity to share our experience.
Amanda Ridding, and my son Nickolas



*Update* I was contacted by Family Relations at Sick Kids who thanked me for the feedback and recognized that it was a difficult experience for us. The message discussed the importance of family centred care at Sick Kids and that the feedback will be forwarded to the MRI manager.

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.