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!

Friday, November 25, 2016

Katheryn's heart

When Katheryn had her yearly doctors appointment this year,  her doctor said that he heard a heart murmur. I had never been told this before, so we wanted to get it checked out.

She saw a pediatric Cardiologist today. Dr Beaulieu, and he was so excellent with her!
Her described everything to her with pictures and videos and explained to Katheryn exactly what was normal in her heart and what a murmur (her murmur) was.

I was able to take a video of the ultrasound that they did to her heart.
And then Katheryn and I put together the video clips and some pictures into a video so Katheryn could show it to her Brownie group (and get a Brownie badge STEM)

video

Katheryn's murmur is called a musical murmur and is completely benign (not a medical problem).


It is caused by a couple of extra tendons in the left ventricle (the large 'room' in the heart). As the blood flows through the heart, it produces an extra sound. Dr Beaulieu described it as being a sound similar to when the wind blows over electrical lines or branches in the trees.



 So it is not a problem at all and will go away as she gets older.

Wednesday, November 23, 2016

Lost Tooth

Nick finally lost his first tooth!


He was so excited and showed off his holey smile to everyone!

The tooth fairy came of course and left Nick his own certificate


Monday, November 21, 2016

Its getting colder

It's getting colder and we had our first snow fall.

The dogs are loving it!


Out came all of our winter coats and hats
And our rosy cheeks and red noses


 Along with cold weather, we need to start coving up Nick's legs
I have a blanket that we have been using. But it isn't waterproof and really I wanted something like snowpants, but in a chair.
 


I found something that I liked, but everywhere I looked it cost so much for shipping and handling, or it wouldn't ship to Canada.
Originally I was going to buy from amazon.ca but for $45 and then another $15 S&H I thought I could probably sew what I wanted myself with an old pair of snowpants.

I kept finding the same picture over and over again of what I wanted (I think). In a violet colour (for some reason this is the stock picture). But it is available in a navy blue as well.
Everywhere I looked for different prices and S&H were the same thing. Hardly any variation, some were fleece lined, some were not. Some covered higher up and some didn't (this one only covers the lap). And they were all from the UK.
It is a brand called Sheerlines

Sheerlines Cuckoo Children's Waterproof Wheelchair Fleece Leg Cover - Violet Image

Why Canada, with all of our snow, doesn't have any supplies of a leg cover for wheelchairs, I don't know. But they don't. Apparently this one variation is enough.

Finally after looking and looking, I found this website:

https://www.mobilitychoices.com/buy/mc001227/sheerlines-cuckoo-childrens-waterproof-wheelchair-fleece-leg-cover-violet

It is a company in the UK. And this fleece lined leg cover cost £21.53 (which is about $35 Canadian). And only $5 Canadian for shipping and handling.
They have the Cuckoo version which is the lap cover.
And the Wagtail version which covers up to the neck and has sleeves for the arm (this is  £41.68)
And a Woodpecker Warmer, which goes up the back of the chair, but zips at the front (this one cost £40.56, which is why I didn't get it)
And a Kittiwake version which is like a rain jacket for a wheelchair user
Here is a link to the Sheerlines children's products: http://www.sheerlines.co.uk/children-39-s-range/cat_5.html


I ordered the Cuckoo version (in blue) and I hope that it will work well.
I'm hoping that it will come before the next snowfall and I'm excited to have something!

Tuesday, November 15, 2016

Independence

Nick likes walking with his crutches.
That is what he wants to use to move around. More than any other piece of equipment we have. The crutches (the ones that I fought for when I was told they wouldn't be an option, the ones I bought in 2013 because I couldn't get PT to say we could use them.) And 2 years ago, when we just started using them (the link also bring a little trip down memory lane for physiotherapy)

I look back at 1 year ago and see how much he has improved with is crutches!


Nick uses his crutches most of the time in school (except for gym and recess). And in the house. Even when we are grocery shopping or at Walmart, he wants his crutches.
But now after Nick gets off the bus at school, and wants to walk home!


He does get tired after a bit, but he wants to do it!

Sunday, November 13, 2016

7 years old

How did this happen?
How did I get a 7 year old!

7 years ago was one of the scariest of my life, as my baby boy had to leave me and go into an operating room (not right away, but that is what it felt like). I was so afraid we would lose him after just meeting him.

Now his is 7 years old! He is the most loving and caring boy I know. He is obsessed with Star Wars and Avengers which he plays all the time. He loves his sister and is a ladies man, with lots of girl friends at school.


He is shy at ...first but once he warms up his personality comes out. And it is quirky and funny and he loves making you laugh. He is so full of love and laughter with a touch of trouble maker


Happy Birthday to my baby boy. I love you so much!

Saturday, November 12, 2016

Happy Birthday Party!

Nick had his first school-friend birthday party!


He decided that he wanted to go bowling for his birthday.
This is something that he can do (with a ramp) and has fun.


Not all of the kids had been bowling before, but they all had fun


We had 3 different teams


It was a little complicated trying to decide who would be on who's team. But I think everyone was happy in the end. (And there wasn't any crying like at Katheryn's bowling party)


We had an hour of owling, and then an hour in the party room for cake and pizza.

This is Nick's Star Wars Rebels birthday cake. I think it turned out great!
And he really wanted a Star Wars Rebels Birthday



All of the kids had face masks in their look bags. So we got a group photo (lots of kids wanted to be Storm Troopers)


The birthday boy was very happy!

He got a little bit nervous when everyone sang happy birthday


But I think he also liked the attention


His friends were so cute, everyone wanting to show him what they got him.
I think that everyone had lots of fun. They each left with a loot bag with Star Wars goodies (and their face masks) and some token for the arcade (there was no way I was going to be in charge of 10 kids in there!

We spent a little bit of time in the arcade afterwards. Kyle and Katheryn had a fooz ball game


And somehow the kids talked us into going to Boston Pizza after the party




Nick said he had a great birthday party and can't wait to come back!

Friday, November 11, 2016

New Braces!

It was time for some new braces!
This is always an exciting time for us. New braces means the opportunity to stand straighter, taller, steadier as he has outgrown his old braces.
We also get to work with Eric at DP&O who is always excited about the opportunity to try new things to get Nick to challenge himself and get him to the best of his ability.
 
Because they do all of the work and adjustments onsite, we have a long wait in their gym.

It started with Nick testing out his "please-can-I" face. With the lip out, head tilt and squinty eyes. He has been doing this all week, because he told me "It worked on you last week"


In the gym we tried some baseball (high knees and balancing of course)


He was getting discouraged because he couldn't hit the ball. I told him it was probably the pitcher. We upgraded the ball and he got it no problem



Then Nick found an air pump. He had lots of fun spraying me



Then it was time to test them out and see what the new braces can do!
One of the new things we are trying out (along with a new parts for the hinges) is that the plastic part is at the front of his thighs, instead of behind.


The straps at the ankle are different and more diagonal. And it is set to tilt him more forward and less letting him rest back in them.


While the braces went back, Nick had a little bit more fun in the gym.

He told me "mommy, close your eyes"




He thought it was so hilarious!

video

Pretty soon the braces were ready and we were out the door!
The design that Nick chose was Star Wars (of course).
His favorite is Star Wars Rebels.


These 2 are on the top braces, and the one below is on the bottom brace.


Nick loves them.
And he likes that it looks like they are fighting while he is walking.
I hope these braces work well. I can see Nick walking straighter. Less toe-walking.
And I hope that we can get some more independence, and hopefully get back on track for standing unassisted and then walking unassisted.

New braces are always exciting!

Monday, November 7, 2016

School Pictures and School Update

Our school pictures are in!
School report cards came home too.
Not really any surprises. This is just the progress report, so there isn't any ABC's

Katheryn is doing well is everything, and excellent in Math (her report card said she is a risk taker in math!... which is a really good thing). But she needs to work on her organization. Math and reading are Katheryn's favorite subjects. She reads everything in front of her, and she loves to ask more and more complex math problems.


Nickolas's report card didn't have any huge surprises. He is good at working with others, is good with science and gym (his favorite subjects). Independent work, taking initiative are areas he needs to work on (which he needs to work on at home as well). Math and language is still his biggest challenge. Math isn't any surprise, it is typical with spina bifida (but I'm still trying to figure out how to help).
I had hoped language (reading) would be better. Nick is doing fantastic at reading and will read independently with minimal help! Which is a huge improvement from last year. But not enough for grade 2 (yet).