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!

Saturday, September 22, 2012

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.

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