General Meeting

We went to the Annual General Meeting for the Spina Bifida and Hydrocephalus Association of Ontario. 

Every year we try to go, and every year I bring the kids (or at least Nick). I really think it is helpful for him to be in that environment, even though he doesn't pay attention to the presenters. I also bring lots of toys and stuff for the kids to be distracted by.

This year they had another awareness initiative with t-shirts

SBH

Spina Bifida and Hydrocephalus

Spirit Breakthrough Hope has traditionally been the slogan of SB&H

There is a new slogan of Strong Brave Human

These are different words for SBH, but it is not specific to spina bifida and hydrocephalus, it is something that is for everyone.

 Everyone is strong, everyone is brave, and everyone is human. 

So here is the thing. Wear the shirt and be aware of how you are strong, brave and human. And when someone else asks you about your shirt you challenge them. What makes you strong, brave and human.

This got me thinking, imagine a day (in June) where everyone wears a shirt to celebrate themselves and what they can do. What makes us the same and what makes us different, what makes us strong, brave and human.

I am excited to bring the idea to Nick's school and even my work.

Another thing at the General Meeting was that I got an award.
They said some really nice things about me, and what I have brought to the organization and done to raise awareness and support in the community. It was really nice and I am so thankful!

Nick and I also got to meet someone I only met online. Jenna is an adult with spina bifida and Nick was excited to meet her. I am so thankful for her perspective and knowledge and it was very nice meeting her in person

The kids also each got a present that had been donated to the organization.
Katheryn got a bunny (that she carried around with her all day... and longer). Nick got a Batman play castle, and the kids have set it up and play with it after school every day!

It was nice that I was thanked at the general meeting, but I am incredible thankful that the organization is there for me and my family. This is why I work hard raising funds for the organization through calendar sales (coming soon) and our SWWR walk

General Meeting - Hydrocephalus

This month was the annual General Meeting for SB&H, our Ontario organization.

This is the second year I've attended. They have presentations every year from professionals in the area. This year the area we were talking about was Hydrocephalus.

I think I'm the only person who took notes on the presentation, but it was interesting.
One of the presenters is a renowned neuropathologist, Dr. Marc Del Bigio and he discussed the brain with hydrocephalus.
The information he gave us was interesting. And I understand the importance of having specialists coming and  talking to us, but the title of the presentation would give me some insight into the way we heard the information presented.
Damage and Dysfunction in the Hydrocephalic Brain
Personally I'm extremely sensitive to not labelling. Not saying Hydrocephalic brain, but the Brain with Hydrocephalus. Doesn't really seem to be that big of a deal, but it is to me.

Anyways.
The speaker is a pathologist. Which means that he is used to working with dead people ect. Which adds valuable knowledge, but you have to remember he is talking to a room full of people who either have hydrocephalus themselves, or has a loved one who does. I swear my mouth dropped open when he talked about animal testing and autopsy findings.
I`m going to review my notes and put them into my other, learning blog.
HERE - I want to get this part out before actually adding the information (with pictures) so hopefully it will be up by the time you visit.

The second speaker was Dr Ruth Donnelly who talked about her research done with 100 kids who have hydrocephalus secondary to a number of different reasons.
How Smart Are Kids With Hydrocephalus?
Is this a reasonable question?
Is there a reasonable answer to this question?
Not only did she start by saying who did we think was smarter. But she ended the presentation saying that no matter what different tests say, they do not label our kids.
Hallelujah!
It`s very nice to hear from a medical professional. I know sometimes we feel that they just don`t understand, and that we are fighting a battle to get our kids to seen as just kids, who also have ...
I`m going to review what she talked about as well HERE

Other parts of the General Meeting we got to meet 2 puppets with spina bifida!
Teaching Awareness through Puppetry
They go to schools and talk about what it`s like (for the puppet) to have spina bifida, and give an opportunity for questions.
They start at Grade 1.

Another great part of the general meeting was the opportunity to meet other people. I sat at a table with 4 other mothers. 2 of whom I know, but the other 2 I've only met online. It was nice to sit with mothers and eat and chat. They are also 'ahead of the game' with older children.
We are hoping to all meet at a Support Meeting for Hydrocephalus in about a month - our second meeting for our newly formed group with help from SB&H.

I enjoyed the General Meeting, and will definitely mark it on my calender for next year as well.

SB&H General Meeting

I know, what a boring title!

I was invited to the SB&H general meeting to win an award. Good thing I got an invitation because while I had really wanted to go I was scheduled to work that day. But when I was going to get an award, I begged and pleaded until someone took my shift!

AHH! I was looking at the site to link here - and look who is front and center on the website for the Spirit Wheel Walk Run!! That's right! ME (oh yeah and Nick is in there too)!!! Spirit Wheel Walk Run: Enthusiasm and Creativity in Action

The meeting had 3 guest speakers. Dr Drake who is a pediatric neurosurgeon at Sick Kids (he isn’t Nick’s neurosurgeon, but a lot of our kids in our group has him) and he talked about shunts, and infection rates with shunt protocols. He also discussed the MOMS study from a neurosurgeon aspect.

The next speaker was Dr Ryan, he was a obstetrician at Mt Siani (again not one of Nicks/my doctors, but one of the popular SB doctors). He went of the MOMS study some more (at high speed), but also talked about bringing intrauterine surgery for spina bifida to Canada. He anticipated that there would be this surgical option in Canada in a year (how exciting is that?!) And also that OHIP has approved the surgery at CHOP (Philidelphia) which sets a precedent for other Ontario residents who find themselves newly diagnosed.

I was also excited about this option for an obstetrical nurse point of view as well. I could just imagine working with parents who just had the repair surgery. Something that might be interesting to pursue in the future (as if I had time).

The last speaker was Dr Wright, who is (Nick’s) orthopaedic surgeon at Bloorview. He started right at the basics and discussed research and what it means (a very basic review for me who has taken multiple research courses) but very helpful to the audience who were leargely not-medical. He discussed a new approach to orthopaedic surgery which is mostly hands off. Hip dislocates? Many years ago they would operate, but then they found that it isn’t that helpful. Scholiosis? It needs to be pretty bad to consider surgery. Club feet? Don’t go to surgery first.

That was the educational part of it (and I really enjoy the educational part).

There is also a puppet show. A company called Teaching Awareness through Puppetry (TAP) has a puppet with hydrocephalus - Andrew - and we got to see the first performance. It is aimed at kids in grade 1 – 3.
I think this picture is from a different company - but the idea is the same.

I got to meet people from the organization that I had just talked to via email. Then they gave out  awards. Ooo! That’s where I come in! And other parents who have been fundraising the last couple of years. Including Sharon Enis who recently wrote a book about her experience after her daughter Gabby was born with spina bifida. (here is a video talking about her book ect)

I recognized the other parents who got similar awards from their fundraising with the SWWR.

Oh and did I mention that in our recent Current Magizine, I’m not in it just once, but twice! Our walk from last  year and this year.

This fundraising thing is a lot of fun!

And talking about fundraising – it’s calendar time again! Just $20 gets you a cute calendar, a chance to win money and knowing that you are helping a great cause! Just contact me for details!


Nick thought the award was fun to play with!

Wow you can see through it!

Is this yours mommy?

 But i want it!