Hey! I'm Carissa.
After Julian was diagnosed with craniosynostosis (also known as cranio) as a baby, we didn't have a whole lot of places to turn. At first, we tried the hospital, but they really couldn't connect us with any other parents due to privacy concerns. However, we found these two great groups online, and got super involved with them:
We got hats and gift packages from them, met with other families who were having the procedure done, I got to bring headbands to babies who were still so little they didn't have hair and whose parents weren't our style of "don't like it, keep staring" when dealing with rude strangers. Join, meet up, learn and find other families like yours. It's an amazing community.
I got a lot more medical information and good questions to ask here. It's where I learned the difference, in graphic detail, between a CVR and an FOA. If you're between surgeries, or leading up to one, I'd suggest it as a great resource.
Juju's website! His personal "look how cute I am" site fell by the wayside, but this still chronicles a good portion of what he's been up to (at least medically) and how his surgeries went. It also gives some resources for things that worked for us, gives you our contact information, and lets you know that being scared is okay, but that so is hope.
West Coast Haunter's Convention (and the school that it supports/supports it), Oregon School For the Deaf, are two of my favorite places in the world. They are filled with some of my favorite people, too. How much time I am in each place (Salem and the 3 day convention) varies, but it has been years.
I also currently serve as a PCP (Precinct Committee Person) for the Multnomah County Democratic Party, and as the Webmaster for the LGBTQ club at American Public University.