9th Nat'l Hydrocephalus Conference

I just got home from Baltimore, MD. My sis & I went to the Hydrocephalus Conference. My first time away from Maria for so long -- she looked older when I saw her today! The conference was good. Very intense and emotional, but good. Gave me several new things to worry about (how will Maria get insurance when she's over 21, will she need shunt revisions or eye surgeries like many of the other kids, transitioning to school, transitioning from child to adult medical care), but I also met some very nice people and learned some good things.

The first session I went to was mothers of kids w/hydrocephalus. I was in the group with kids under 5. Each person told the story of their child, many of us were on the verge of tears, then Rosanne said she'd tell the story of Maria because it was probably too hard for me to talk about it, and I started crying, which got most of the other women crying. From that session I learned that moms of kids under 3 were still very raw, whereas moms of kids age 4 or 5 or older were much more stable and positive. Many of the stories gave us hope. It was a good move to have that session be first, because we saw each other and talked more as the conference went on.

- We learned a lot about the anatomy of the brain and what happens when you have hydrocephalus. They had a model of a brain that you could shove a shunt into to see how it felt, but I skipped that experience.
- Learned how to lobby the Congress to fund more hydrocephalus research. Very good, interesting session; then the speaker (Congressional staffer)'s son, who's 10 and has hydrocephalus, got up and sang What a Wonderful World, and there wasn't a dry eye in the house...
- Got a summary of the National Institute of Health's 1st conference on hydrocephalus last Sept, where they brought together a bunch of doctors to discuss research that has been done and needs to be done -- interesting, aggravating, and hopeful. Apparently, hydrocephalus is called a rare disease because it's not cured by drugs so the pharmaceutical companies don't do research on it, and shunts are effective so doctors haven't done much additional research or improvements.
- There is a web-based personal medical records site called followme.com; they customized it for people with hydrocephalus. It's called myhin.org (hin = hydrocephalus information network). You can store all medical data, records, scans, etc so they're available to all medical professionals who have access to the internet. Pretty awesome.
- I walked out of the shunt infections and malfunctions session, very informative, but way too graphic for me (multiple surgeries and tests, sticking needles in the brain to drain fluid, ahhhhhh)
- They discussed how to effectively get a 2nd opinion.
- Listened to a panel who all have hydrocephalus (49-year old man who's had it since he was six, didn't have a shunt revision in 40 years, but has had 20 or 30 or more? in the last 3 years; 24-yr old woman who's had it since birth, lots of issues but she's very successful now; a 73-yr old who was in a wheel chair, incontinent, had to be fed, they discovered she had hydrocephalus and now she's walking, talking, dancing -she was hilarious, her goal is to get Oprah to be the spokesperson for hydrocephalus because "she can probably get the word out"; and a 19-yr old boy who's had it since birth, has had some troubles, but seems to be doing very well now). It was pretty uplifting, yet freaky at the same time hearing how many issues they've had.
- Heard from a lawyer about what we should do to take care of ourselves and our children, especially special needs children - very informative.
- We went to 2 social events - a welcome dessert and the dinner/dance. We got to know some of the mothers of young kids better at these events. They're from Minnesota, Maine, and Louisiana. That was one of the best parts- talking with people that have similar issues, not having to be defensive or cautious, able to talk openly about hopes and fears. Of course I was constantly on the verge of tears (being the emotional one...)

I suppose I'll have to go all the conferences (every 2 years) from now on. Maybe I'll bring Maria next time. The hotel was very nice, super comfortable beds, nice view of the harbor, close to great shopping and restaurants, lots of live entertainment at the harbor in the evenings, and plenty of good places to walk around the harbor.

So, overall it was a good weekend. I would not have wanted to go to it alone, I'm glad I had Rosie's support. Maria and her local grandparents had a good time. Manolis had some time off from the girls. Andy was with his buddy from NM. Now it's back to the ol' routine: work and therapies.