Saturdays in June - Round 3

Hydrocephalus Conference - Park City 

Shawn, Cole, and I were lucky enough to the Hydrocephalus conference in Park City at The Canyons a few weeks ago. They hold a conference every two years. The last few conferences have been in Chicago, Baltimore, San Francisco. But this year they came to Park City - a mere 50 min from our house! The Hydrocephalus Association was able to secure a pretty good rate in the condo / resort on site, and with the cost of gas and the sessions starting at 8:00 and ending at 5:00, and not to mention we needed a break - we decided to use some vacation funds and stay up in Park City. It was lovely (as you can see from the pictures below). And the weather up north is about 8-10 degrees cooler, which we didn't fully appreciate until we came DOWN off the mountain. 

Although not clear from the pictures, we spent Thu evening through Sun afternoon (like I said 8-5:00) in general sessions and break out sessions. It was a fairly typical conference in that the first and last session included open lectures and the rest of the day was filled with no less then 4 break out sessions each hour. Some were not as applicable (Normal Pressure Hydrocephalus, Siblings feelings, Adults dealing with HR issues and Hydrocephalus) but there were plenty that were. 

And most of the time Shawn and I split up because we wanted to get as much info as we could. There were people there from all over the country with all levels and all abilities of Hydrocephalus. Beyond the break out sessions, meeting with the doctors, neurosurgeon (including ours and his team), neurologists, etc. we got to meet with parents who were able to share the day-to-day stuff with us. In fact the picture above was a group picture they took on Tue afternoon before all of the entertainment (Shawn and Cole are a little left of center). 

Here is Shawn and Cole (and crowd) doing the Chicken Dance -- come on, you know you know how to chicken dance!

  

And here is Cole enjoying the Chicken Dance, especially the clapping (you can almost hear them ... da da da da da da da, clap, clap, clap, clap, wiggle, wiggle, wiggle  ... repeat --- But just in case it's not immediately coming to you, we've added it to our song list so you can Chicken Dance at home with those YOU love! (Take pictures and send them - we'd love to see everyone doing the Chicken Dance)

    

Sunday they had a few sessions before closing out the conference. After which, we went up to the top of (well as far up as the gondola goes - we each received a ticket with our conference attendance) the hill. Here are just a few shots of the mountain (up and down). They have a restaurant up there (you can see it in the slide show) - and had we not been so hungry and the food so scrumptious we might have taken pictures for you to see. But you'll just have to imagine the creme brulee french toast... yummy (no syrup needed!!).

  

Cole loved the ride up as evidenced in the pictures. Apparently change in altitude can effect some folks with hydrocephalus, so we were watching him pretty close. But in speaking with the parents and doctors, the altitude would have to be pretty drastic (more so than the altitude pressurization in a plane at 8000 ft) which we were well below (we live at 4500 roughly). So he had a blast and was so good for all of the sessions. Grandma Jacquie came up one day to relieve us - but don't tell her, but we think it was more for her and Cole's benefit than ours -- :-)

They had brought some pretty amazing things. One of the pictures in the slide show above is of these gel brains (made from jello molds you can apparently find on the internet (got to get some of these) and these researchers helped anyone who was interested (we TOTALLY were) in understanding what it would be like to install a shunt in a brain including how we would test to ensure it was functional and what it might feel like (the pressure in the fluid) if it wasn't. Another doctor brought video (I would have taken pictures if I hadn't been totally absorbed) of actual brain surgery where they drill through one of the ventricles to allow the fluid to move better. We'll post drawings to describe that process later. It was really amazing to think how far we have come from really a short time where they were doing completely open brain surgery to now fairly laproscopic work (but which has to be so precise given all of the major arteries and brain matter up there.