Summary of the July Meeting

Great July meeting!  We had a small meeting, but a very successful one.

Among the topics we discussed was the use of scans on kids.  A recent incident at Tacoma's Mary Bridge Children's Hospital inspired the discussion.  Briefly, a small child was taken to Mary Bridge after a fall from an upstairs window.  It wasn't known if the child ever lost consciousness, but he was crying & vomitting.  The ER doc who treated him, allegedly, didn't feel that any scan was necessary, despite the classic symptoms of a head injury & the specifics of the situation.  Ultimately, the child died & an autopsy discovered that he had a clot that was putting pressure on his brain, ultimately killing him!  Our group's hearts go out to the family of this child.

Something that was also discussed, as part of this topic at the meeting, was that there are lots of different types of scans, some of which don't deliver the level of radiation that the hospital/doctor talked about & was mentioned in some of the news reports of this.

We also discussed our group's desire to get some publicity focused on us for September's Hydrocephalus Awareness Month.  Unfortunately, our state government doesn't do much to highlight the issue.

I've been updating our information and added some resource lists to our own group's focus on public awareness & reaching out to those of all ages who are living with hydrocephalus, their loved ones & caretakers.

Looking forward to the August meeting! 

July 2012 Meeting Reminder

Just a quick reminder that this Saturday is the July meeting at Swedish Hospital's Cherry Hill Campus (17th & Jefferson) in Seattle.  We meet from 12:45 pm to 3:00 pm in the Casey Room.  We welcome drop ins & children. 

I should have included that we discussed folic acid and the lack of media attention given to its importance in lessening the incidents of neural tube defects, which spina bifida & congenital hydrocephalus are just two examples.  Every women, of childbearing age, should know her folic acid levels and consult her physician (GP, OB/GYN) about what level should be maintained.

One of the main reasons for 'enriched' flour being used in so many of our prepared foods and ingredients like flour, is so that ALL women get additional folic acid.  There are also a variety of whole foods that are easily accessible in the produce section that are higher in folate (folic acid) than other foods.  I'll include a list later.

JUNE 2012 MEETING

As always, it was great seeing our group again.  Time went by so fast.

Among other things, we discussed the upcoming Hydrocephalus Awareness Month in September and ways we can bring awareness to the condition & to the group.  We had a promising lead with a local radio personality who expressed support for the group & our mission.  However, that seems to have fallen through.  Hopefully things will change before Sept.  It would be great to do one or two radio interviews, talking about various aspects of hydrocephalus.

I got an email from an unknown person, who was asking about shunts.  In general, there are SO many of them and so much research going on at any given time that it is impossible to tell what type of shunt or even if it is specifically for hydro.

I'm looking forward to the next meeting, on July 21st, from 12:45 to 3:00 pm.  As always, we welcome drop ins & kids, as well as families, friends, caregivers & those of us living with the condition.  The Casey Room at Swedish Cherry Hill Campus has been a great meeting room for us.  It is located inside the dining room, just down the hall from Starbucks!

Brain Injury--Adults

We've been seeing and hearing quite a bit in the local Seattle press lately about adults with head injuries.  Specifically, James Foster, a young man from Puyallup who was beaten after complimenting a man on his car.  The brain damage is apparently permanent, although no reports specifically say anything one way or the other about hydrocephalus.  We would like to extend our moral support to the Foster family and let them know that if they would like to come to our meeting (June 16th is our next meeting, from 12:45 pm to 3:00 pm at Swedish Hospital's Cherry Hill Campus, 17th & Jefferson, in the Casey Room), they are more than welcome.

We've also been hearing the latest in the story of Christopher Harris, who was slammed against a wall a couple of years ago, by a Sheriff's deputy.  Like Mr. Foster, Mr. Harris' life was forever changed because of his head injury.  Not only were these men's lives changed, so were those of their families and friends.  These were preventable injuries, recieved through no fault of their own, except being someone else's victim.

These are just two cases getting attention right now.  Again, families, friends & caregivers are welcome to attend our meetings, although we do specifically talk about living with hydrocephalus.

May 2012 Meeting

The May meeting was very informative and we had a lot of fun--as usual.  We discussed the Charlie Rose Brain series.  I really want to buy it!

We also had a great conference call with one of our members on the east coast.  It was great talking with her.

We have also been discussing doing some additional outreach to caregivers, particularly parents--both those with lots of experience dealing with hydrocephalus, as well as other brain issues.  Recently, a young man in Puyallup, Washington received a TBI after being assaulted.  He is now in rehab, but has had life altering brain trauma.  I haven't heard if hydro is part of his TBI or not.

As always, I'm looking for more 'stuff' to include in the 2013 Brain Awareness Open House exhibit.

Unfortunately, we didn't get to meet a couple of new folks as we had hoped this month.  Maybe at the June meeting.

Can't believe that we are almost to June already!

BRAIN AWARENESS OPEN HOUSE--SUMMARY

Again, I would like to thank everyone who helped out this year at our table.  Medtronic's assistance was invalueable.  Very much appreciated.  We reached over 600 kids, parents & educators at this year's event.  The reusable bags, caps, squishy brains, etc. were all very popular, as always.

I would also like to thank Dr. Eric Chudler for his tireless efforts he puts forth every year, for the last 15 yrs, to put on an excellent event that engages the interest of kids, parents & teachers.  BAW provides groups, like ours, with a great forum to reach out to folks who may not have any experience or knowledge of hydrocephalus.  Thanks again.

I would also like to thank MOHAI for their generosity & support with providing BAW with a venue to put on such an event.

I am hoping to post some photographs from this year's event soon.

Looking forward to next year's event!!  It will be #16 for us.  Wow, it doesn't seem that long.