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!

Thursday, April 13, 2017

Nickolas the Walker!

So Nick has been very comfortable walking with his crutches up. We saw a couple of weeks ago, him taking 16 steps down the driveway.

When we are waiting at the bus stop for Katheryn in the afternoon, and Nick wants out of his chair, we will do some standing

He likes doing it (even though he doesn't show it in the picture). And the kids on the bus cheer him on (many of the kids are in his class at school).

So I decided I would take away his crutch... literally... and see what he could do
I wanted him to walking across the room. For real. To me



Off video, I actually have him stopping in the middle of the room and starting again. This to me, shows that he has control and isn't just using momentum!


I actually made him work hard for the video! We did it over and over again, back and forth.
Katheryn really go into being a cheerleader to him!
Presenting him and calling him a walker!


So this is it! I am calling it!
7 years old and 5 months old, and 10 months after his back surgery.
Real steps! Nick is walking!!!!!!!!!



Thursday, March 30, 2017

More Walking

Ever since Nick started showing off at March Break, walking with his crutches lifted, he has been pushing himself farther and farther.


He is really enjoying showing off and being the star of all of these videos!


This is a video that Kyle took one day after school.
He just started going down the driveway with his crutches up!


It makes me wonder how he will do if I make him walk without his crutches...


But enough for pushing him further. Look at him now!


I counted 16 steps!
I'm not sure why he went all over the driveway, it is on a slant, so maybe it is like skiing, and you go side to side instead of all the way down...

Way to go Nick!
I can't believe he only started doing this 2 weeks ago!

Wednesday, March 15, 2017

Skating at Nathan Phillips Square

A classic Toronto experience, especially with the TORONTO sign.
Since it was March Break, and it was still cold, and we were going to be in Toronto for an appointment, and driving (because it was an 8am appointment). I thought that the star were aligned enough to go skating at Nathan Phillips Square!


I had packed everything, but we were supposed to get a snow storm. So it wasn't until our appointment was done, and there was no storm, that we decided to go.


It was cold.
But Nick did a couple of rounds, and then he was cold.
... So when I say that I packed everything... I didn't pack any snowpants. For any of us.

They had the skate helpers, so Katheryn used those.


We had fun taking pictures with the TORONTO sign in the background. Usually the rink is very busy, but this was in the morning, of a cold day (even if it is March Break), and they had called for a major snow storm. So there was only 2 other families out there with us



Pretty soon Nick was cold, his hands were cold (he only had regular gloves and didn't want his hockey gloves) and he was just over the outdoor skate.



My Dad took Nick into a nearby building to warm up and get some hot chocolate.
Katheryn and I kept skating.
Katheryn wanted a picture to bring to her class to show everyone what she did over the weekend!
But she didn't want the skating aid in it.


We took some funny pictures


And we skated around some more


And Katheryn took a picture of me on the ice!


After about 30 minutes we were done (we outlasted the other 2 families that had started with us).
So we went to find my Dad and Nick and get warmed up.

They had fun skating, but if we do this next year I need to remember the snow pants!

Showing off!

We had a neurosurgery appointment yesterday. And I had been worried that Nick wasn't near to taking independent steps again. One of the signs of loss of function and the reason we did the spinal surgery last June.

Nick and I had tried doing the steps over the last month or so. Just like in the video, and so we watched the video together. But I couldn't get him to stop and just take little steps. He would just want to start and keep going.

On Monday we went to visit my work and go to a couple of meetings (March Break fun), and when we were walking back to the car Nick just started walking with his crutches and as I watched he just started to do this...





Over and over and over.
He liked doing it more than with his crutches down!

I know that this isn't the same as having the control to start and stop, but it is an incredible step!

The video I have above is actually 2 clips together. Well, the first video is cut off.
This is the whole first video, Nick thought it was hilarious and kept laughing at the video. Katheryn said it should be posted on Fail Army or Funniest Home Videos



I don't think it is that funny, but he bounced right back up!

We did have our neurosurgery appointment yesterday and got the all clear for another 6 months (earlier as needed of course).
I did mention that at the bottom of Nick's cyst scar is a bump. I think that it was normal (and when we saw orthopedics, he said he thought it was normal as well). But I wanted the all-clear from Dr Rutka. And I got it. He said it wasn't anything to be concerned about.



I also mentioned that Nick's eyes will sometimes twitch. But it didn't affect his vision, that I could tell. But we were having difficulty seeing the ophthalmologist at Holland-Bloorview, and were about 9 months past our recommended appointment time.
So Dr Rutka said he would put in a request for Nick for the Sick Kids ophthalmologist.

And we don't need to be back for 6 months!

Thursday, March 9, 2017

Mucocele

A couple of months ago I noticed that Nick had a large bump on his lip.


I wasn't sure if this was within the realm of a dentist or a doctor, so when Katheryn went for a dentist appointment, they looked at Nick's lip as well.
She said that it looked like it was a mucocele, and if it didn't get better she gave me a referral to a dental pathologist.
I had done my own internet/google search and that is what I had thought it was as well. It was not tender and didn't seem to bother him at all. So I waited another month, hoping it would go away, and then called for the referral.


We went to the dental pathologist last week. It measures at 10mmx10mmx5mm deep. And she recommended to remove it.

A mucocele develops after some type of damage to the salivary gland (either a bump on the lip from the outside, or biting from the inside). This caused the gland to rupture and a collection of fluid created the bubble. It could grow bigger if it is damaged again, it is unlikely to go away on its own. (from what the dentist said, because it went deep... even though Dr Google says it could go away on its own.. and it's been a couple of months with no change).

We talked about what would be involved in removing it. And decided on local freezing and nitrous gas. Nick didn't have any questions at all.

But when we got home he was very upset and said he didn't want to do it. The only thing that helped him calm down was a promise we would go to McDonalds before, and that I would be with him.


He was very good and quiet when we got to the dentist. But answered all the questions. We found out at the very last minute that I wouldn't be able to stay with him (I am not sure why I hadn't asked before). He started to get upset, but no tears, when the nitrous was on he was brave. When he took some big breathes and started closing his eyes (and had his Joker and Batman on his fingers) I left.
About 20 minutes later they called me back in.
Nick was good. No tears, they said he was their best patient of the day!

And they spoiled him with the treasure box of toys. I think he took 10 different things from the box home! They kept saying "you don't have that one..." and let him pick more toys.

Right now he has 3 small stitches in his inner lip. He's been having a bit of pain and taking Tylenol, and having soft foods for the night. But I sent him to school this morning

We go back in 2 weeks to confirm that it was a mucocele (they do a biopsy) and make sure it is healing.
They took out the one gland and a couple surrounding it (there are thousands in the mouth). And he will have a scar once it heals. I am hoping that it won't return, but it could.