Spina Bifida Clinic

It was time for spina bifida clinic again!

Nick got to show off his crutches skills!
And of course impressed everyone!

Clinic Day is usally a long day, and so we came prepared to spend the day in the waiting room. But we actually spent most of the day in an exam room. So we could spread out our stuff.

We saw physiotherapy, who was very impressed with his walking. And orthopedics. He got the all clear for scoliosis. Nick has had a bump at the bottom of his cyst scar, I find it there sometimes and then not there at other times. I asked if I should be concerned from an orthopedic standpoint. But he didn't think so.

We saw occupational therapy. I had some questions about Nick's wheelchair, and the possibility of how to look at getting the FreeWheel. There isn't any funding for it anymore. So we'll keep that in mind when we are looking to buy it. She had some suggestions for the wheelchair, but we will follow up on them with Grandview OT. We also talked about Nick's computer and some suggestions for programs to help with typing.

One of the things with the SB clinic, is that you get to see everyone, but you need to also figure out who to talk to, to get some answers. Or at least know that you are on the right path.


When we met with urology we talked a lot about what we have been doing. After Nick's spinal surgery the urology issues we were having improved. Botox right now is another option, but not something we want to explore right now.
But the thing that got me excited was that I FINALLY had someone to recommend and actually suggest putting the PEG in our solution at night! I have asked this many times and have been told no.

We also met with Dr Church. She is my favorite doctor! Not only is she passionate about caring for Nickolas, but she listens and respects me. Both as a mother, an expect and a nurse. In fact, she sent her residents out of the room at the end of our assessment so that we could chat.

During our appointment we talked about Nick's overall health. She asked about school and Nick's IEP, I said that seems very basic to me, and I'm not sure what to do about it. I never even thought about his IEP or I would have brought a copy with me.

So I'm getting a copy of Nick's psycho-education assessment and his IEP to see if there are areas that we are missing that we can help assist him in his learning.

Overall it was a good day. Nick is 114.6cm, which is 17%ile, and his weight is 22.5kg, which is 42%ile. So he is shorter, but we know that this is most likely, and his weight is ok, if a little under but not concerning.

We go again in a year, but everything is looking good and stable.

Christmas Tree Hunting

Nick decided he wanted to walk with his crutches for Christmas Tree Hunting!

And when he got tired, he always had Daddy's sholders!

Or Mommy's

We went to the same Christmas Tree Farm for the last couple of years. But this year we really had a hard time finding the right one. They just weren't tall enough for us. But we were here and we were not leaving without a tree!

They had a wagon ride my parents and the kids went on while Kyle and I kept looking

We finally found one that we all agreed on

The best part for the kids were the popcorn and hot chocolate afterwards

And Papa and Nick had some popcorn fights!

We got the tree up and lights right away

And the kids were both very excited to decorate the tree...
And different from other years, they actually did decorate the tree!

Nick worked on all of the lower pieces (and practice standing)

And Katheryn used the stool to get the middle parts

And Katheryn collected and handed out all of the ornaments

I got the top parts

The tree turned out perfect!

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)

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.

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

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

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!