Fun shirts

I like buying things online. If someone posts a picture of a shirt or a link, I will very often go and track down the link. Especially if it is something fun, funny or awareness related.

I do this all the time for the kids clothes (and have been told I have the most interesting awareness clothing), and sometimes for myself (what is more fun that a shirt with a wookie on it?)

So when I friend posted about these shirts with superheroes on wheelchairs I had to check it out.

The company is called Adaptive Apparel www.adaptiveapparel.org/ and they have so many different super heroes (and villians) to choose from.

Nick thought it was so cool and wanted all of them!

He ended up picking Batman.

And Katheryn really wanted one too, and picked Wonder Woman.

 It took about 4 weeks for them to come, and cost $25 USD, and shipped was another $3 (and with a 15% off code - 15OFF - if it still works. With a lot of choice for colours and sizes and even type of clothing.

The kids were so, so excited when the package came. They couldn't even wait until the next day, they tore off their shirts and put these on. And then even asked for pictures!

I agree that it is a cool shirt. (The dark blue doesn't show off the batman, but Nick got what he wanted). It is about normalizing the unique and different, being proud and display yourself to the world (from their website).

2016 Awareness Video

I haven't been doing as much raising spina bifida awareness for June this year. (I've been a little distracted).

But I have updated Nick's spina bifida video. I decided to go with a new look and a new song



Here are a couple of sneak peeks!

 

Spina Bifida awareness video

I know that you might get sick of the same video every year. But I want to keep finding ways to improve it (and include current pictures).

So here is our updated 2015 awareness video!

Our 6th Annual Spirit Wheel Walk Run

The day of our event came. 

And we had a fantastic turn out!

We had 41 people come out as part of Nick's Cheering Squad.

We had families and friends, co-workers and school friends.
And we had 4 families with spina bifida together!

It was about half kids and adults, so we got a kid picture of everyone!
From 2 weeks old to 14 years!

Nick was very excited to start on his walk

We started relatively on time, with Nick leading the way

The weather was nice and sunny but not super hot.
So it was perfect (but I have said that I will walk rain or shine... shine is just preferred)

Everyone took turns pushing Nick, and he had a blast!

We stopped at the look-out and the kids had fun climbing up and watching all of the adults below

and I think the adults were glad to have a rest

The kids were playing a game and didn't want to go back! Except of course that that is where the food was...

We all posed for some pictures while we waited

But for some reason didn't get one of all of us together

I can see how our event has grown in the last couple of years. We used to be walk for the whole 3 hours. Now we walk more as a group together, everyone (almost) makes it to the look out, and then we walk back.

The leisurely pace we made let us all talk as we walked.
And catch up with other families

Katheryn and Hannah were together as usual!

Then it was back to the picnic area for some socializing and food

and baby snuggles

And Nick was doing lifts on his walker

We picnicked right beside the playground (too cold for the splash pad) so the kids all had lots of fun, and the adults weren't too far away

And I even had an opportunity to educate some people who stopped and asked us about our event

At the end of the day we all had another fantastic year of cheering on Nickolas!

Nick passed out soon after we got home...

Always a sign of how well the day went!

We are still fundraising until the end of the month

/https://www.canadahelps.org/en/pages/nicks-cheering-squad-2/

and I'm still working on some awareness posts and videos.

But you will definately see Nick's Cheering Squad walking, riding and wheeling next year!

Our family on CHEX

A couple months ago our local Easter Seals chapter was asking for volunteers to participate in the upcoming Easter Seals Telethon. It was a general email, I got one last year, but Nick was too shy and so we didn't sign up.
This year I talked to Nick about it (it would means talking to a stranger and being on TV). And he said yes.

So we signed up for 2 sessions in the telethon this Sunday. I was contacted as well to see if we would be interested in doing an interview with CHEX TV as a special interest piece. I asked Nick and he said yes.

Our house continues to be a bit of a mess with our renovations (and having 2 kids and 1 dog in general). Someone suggested the school as a venue for the interview.

I left it to last minute (waaay most last minute than I realized right before Easter weekend). But we were able to get permission for filming from Cambell Children's School and Grandview Children Centre.

I tried to prepare the kids ahead of time about Easter Seals. Nick doesn't remember camp at all, (he was 3) and so we looked over my blog posts from 2013 and the pictures.
Day 1     Day 2     Day 3     Day 4     Day 5     Day 6

When everyone arrived Nick was in speech therapy in his stander. So we got a couple of shots of him doing speech therapy.

Then it was interview time. Campbell's did set aside a room for us, but the hallways are so bright and cheerful we filmed in the hall instead (making sure there were no kids in view). And we tried not to disrupt the school very much.

I got to wear a microphone as we talked. Kyle and the kids stayed nearby. Nick and Katheryn ran around in the hallway while the cameraman (?Paul) filmed some scenes.
I wasn't sure what questions Caley, the interviewer, would ask, and so I didn't prepare at all.
I had sent her some information about our family, spina bifida and Nickolas in general as well as some pictures and my blog link. It was very comfortable and not stressful, we did 2 takes of the scene in the hallway because in the background we accidentally may have gotten a picture of some kids.

I wanted to be realistic, positive and also provide information about spina bifida. I think I am much better in writing. It wasn't until until I watched the show later on that I realized I said that spina bifida happens at 12 weeks gestation (which is wrong, it is really 4-6 weeks). And on the fly I thought about saying something about folic acid. But didn't.

The kids in Nick's class went out for recess and so we moved the interview to the classroom. And it was time for the kids. Nick was nervous and in the final they did alot of editing. He gave a fair amount of blank stares to her questions (how did you like camp, what do you like to do in school, what do you want to do in camp this year?), but of course once Ninja Turtles are mentioned he perked up.
Katheryn rocked it of course. We weren't sure if we should let her play hooky from school, but it was perfect that she had the opportunity to be there. And it makes her feel special too.

In the end it took 1 hour of filming and was fun for everyone. A positive experience that will hopefully be repeated on Sunday's Telethon.

The show aired that night. And they spread out the 4 scenes through the whole show. Our parts are at 1:40, 3:10, 19:13 and 34:10. I didn't give enough notice to family (I wasn't sure myself when it would air) so they missed it. But luckily they post it on youtube as well.




Of course we PVR'd it, and watched it live. The kids were not that excited to see themselves on TV. They actually were more excited today when I was watching it on my phone.

I am so happy that we had this opportunity. Not just to show off my own beautiful family, but to raise some awareness and positivity about Easter Seals, spina bifida and also Campbell Children's School

Thanks to everyone who made this possible!

Here is the video all peiced together as well:

Nick's Video

I was looking over some pictures and video to prepare for our Easter Seals Telethon and interview and thought I would update Nick's animoto video. I know it is a couple of months early (for my June awareness video) but here it is just the same.

Shake it off

October is spina bifida awareness month in the US.
The parents and adults in my various SB groups are really knocking awareness up a notch this year!

A group put together this video, they asked for video's from the group to make up this video.
It is so fantastic!



In 5 days of posting, there have been over 17, 000 views!

Other part of their awareness campaigns are #embracethebif showing what spina bifida looks like, and a public group to show photos.
The SBA (American association) missed the mark (like the CEO... who does not have SB... advertising that she has a bum knee and can't run like she used to, as their campaign). All of this is driven by parents/adults with spina bifida.

Take a minute to watch the video and see what spina bifida really looks like!

Spina Bifida and Hydrocephalus Awareness: Week 4

It is the final week of awareness. I'll admit there were some days that I couldn't think I'd come up with 30 different things to talk about. But after a while it just flowed.

Spina Bifida and Hydrocephalus Awareness: Day 24

Social relationships are also important within our big family of spina bifida moms.
Just as it is important to have someone to talk to and be just a regular mom, it is also important to be able to talk to someone who just gets it.

There are a number of outlets for this. I was lucky that there was a parent-baby group for the first couple of years when Nick was younger (until they cancelled it) to actually get together in real-life. Social media has replaced a lot of that personal interaction, but it still has a group of people who just get it.

Baby Center has a group Spina Bifida Kids, there are a bunch of facebook groups (including Living with Spina Bifida and Take That! Spina Bifida) and of course my own group Our Lives, with spina bifida for family, parents, children and adults with spina bifida who live in Ontario. And I can’t forget all of the blogs that are out there (including my own).

During the first couple of years after D-Day I scoured these blogs and groups and tried to find what life would hold for us. Until we just started living our own. Now I use these groups because somewhere out there someone has the same thought as me, or are thinking of the same surgery, have the same concern, or just want to vent. It is for those questions that you want to make sure you have all the information before you get the doctors opinion. As well it gives me the opportunity to give my own experiences to others.

Spina Bifida and Hydrocephalus Awareness: Day 25

I talked about Hydrocephalus and a shunt waaay back at the beginning of the month. But what is a Shunt?

If hydrocephalus is too much cerebral spinal fluid in the brain, then is there a way to take that fluid and put it in part of the body that can absorb it?

The VP shunt has been used to treat hydrocephalus since 1949, and the valve in the shunt was designed by a father (John Holter) of a child with spina bifida and hydrocephalus who just needed to DO SOMETHING, and thought that he could. And he did, creating the Spitz-Holter valve, a design that is still used today. This father continued to manufacture the shunts by hand, supplying over 500 a year.

 

 The shunt is 2 catheters and a valve. One catheter is inserted into the brain (into the ventricles) to take the fluid out, then through the valve (that is located against the outside of the skull) and takes the fluid through the other catheter, down the body, (under the skin) into the peritoneal space in the belly.

There are times the shunt stops working (called a shunt malfunction) for various reasons. This is an emergency as the fluid that is normally being drained is now building up in the brain. If this happens then it needs a shunt revision.

Symptoms that we are always on the lookout for a shunt malfunction includes

·         Headaches
·         Vomiting
·         Excessive sleepiness, can’t wake up or stay awake
·         Irritability
·         Vision problems
·         Changes in eyes, including crossed eyes, uncontrolled eye movements, sunsetting of eyes
·         Seizures
·         Personality changes

The shunt is not a cure for hydrocephalus, just an ongoing treatment.

 

Spina Bifida and Hydrocephalus Awareness: Day 26

Today is Nick’s last day of school. So I’ll talk about learning and that spina bifida and hydrocephalus are associated with learning disabilities.

 

Just because there is an association doesn’t mean it will happen, but being aware of different ways that our kids might learn can help to make sure that Nick succeeds. Anticipating.

I have a whole book all about this (thanks to SB&H). So there is a whole range of different things and areas that Nick may or may not need help with over the next years.

Information processing is the area that kids with spina bifida and/or hydrocephalus may have problems with. Numbers and symbols, visual-spatial processing, making connections and organizational skills are all identified as areas that may be difficult. Kids with spina bifida seem to have a cluster of strengths and weaknesses identified as ‘non-verbal learning disorder’ (NLD).

 

Knowing that these are areas that may cause some frustration and trying to problem solve how to help Nick learn. And more importantly identifying strengths and working on these.

 

We are just at the very, very beginning of our school-learning adventure and I’ll probably know a lot more over the next years.

 

 Spina Bifida and Hydrocephalus Awareness: Day 27

We had Nick’s neurosurgeon appointment this week. To review our yearly brain and spine MRI and to look for or rule out tethered cord.

Tethered cord is the next battle to watch out for. Usually is will occur around the age of 5-10. The spinal cord usually floats free in the spinal column, protected by all of the vertebrae bones in the back.

 But with spina bifida, the spinal cord is held in place by the scar tissue that is created with the original myelomeningocele repair. So as the child grows and gets taller the spinal cord is held in place (tethered) by the scar tissue. This causes it to be stretched and damaged or have limited blood supply to the cord.

There are a number of symptoms for us to watch out for. They aren’t necessarily obvious, but sneaky signs that you might not notice from day to day. These include a change or decrease in sensory, muscle weakness, pain or a change in bladder and/or bowel function.

There is surgery to untether the cord. Surgically loosening it from the scar tissue. This won’t improve any function that has been lost, but it will prevent further loss of function. But doing surgery to untether from scar tissue will actually create more scar tissue. Then that scar tissue will tether so another surgery will create more scar tissue and it is a cycle.

So it is a fine line between maintaining function and preventing surgery and scar tissue.

 

 

We got the all clear by our neurosurgeon this week. But it is still on our radar.

Spina Bifida and Hydrocephalus Awareness: Day 28

It is in one month that Nick is going to have surgery. It is bowel surgery, because while I’ve talked about a lot of the issues regarding spina bifida this month, I didn’t really touch on the bladder or bowels. The nerves to the bladder and bowels are damaged.

The bowels don’t really want to work. So we have a lot of constipation and continence issues. We have been treating this for the past 4 ½ years and tried all kinds of options. The surgery option have been reached after a lot of trial and error and consideration. It will have a profound impact on Nick’s daily life and independence.

 The surgery is called the MACE which stands for Malone antegrade colonic enema. It allows a catheter to go into the belly button, through a one-way passage (stoma) created in the appendix (which is attached to the colon) and allows enema solution to be given directly into the top of the colon. When the catheter is removed the belly button looks like a deep belly button. After it is healed, it doesn’t need anything to cover it.

This way of giving an enema (as opposed to the traditional way) is more effective in preventing constipating and improving continence as the colon will be empty and prevent accidents through the day. It also allows Nickolas to gaining independence to be able to do this himself.

 We are 1 month away, I’m nervous about what it will be like for Nick having surgery, anxious for the recovery to be started and then finished, but know that this will go a long way in Nick’s quality of life.

 

Spina Bifida and Hydrocephalus Awareness: Day 29

Latex allergy is one of those funny things with spina bifida. There is something about having spina bifida that makes people prone to having a latex allergy.

Historically they thought it was because of the early exposure to latex through surgery, but even after ensuring latex precautions immediately (I insisted on latex free from delivery) severe latex allergies develop. So we treat Nick as if he has a latex allergy.

Natural rubber latex (not the fake stuff) can cause severe anaphylactic allergic reactions at some point of exposure. The more exposure, the more likely to develop the reaction. Natural rubber latex is in a bunch of stuff, including many of the ‘all natural’ products. It in a surprisingly number of regular use items.

 

 

Our biggest worry and no-no is latex balloons and latex gloves. These are made by pouring latex into a fine coat to make the stretchy, rubbery surface. When balloons are popped or gloves are removed it releases latex into the air.

As well anything that goes into the mouth (i.e. dental products, pacifiers, nipples) or remains on the skin (i.e. bandaids) or that is obviously rubber (i.e. rubber bands) are not in the house.

Spina Bifida and Hydrocephalus Awareness: Day 30

I thought I would end my month of awareness with a PSA thanks to a fellow SB Mommy Joanna.

And that is it.
I hope over the month that I have helped to increase awareness and helped you to learn something you might not have know.
And at the end of the day, even with all of the medical stuff and concerns, this is what spina bifida looks like.

Not because he was born with spina bifida or in spite of being born with spina bifida. But because he is Nickolas, a little 4 1/2 year old boy who LOVES AND LAUGHS.