Yet another random update post!

Marissa’s Dad’s xBox 360.

It’s out the door, out for repairs.  Sad day indeed.  I do have a loaner xBox, so if I get a few spare minutes, I’ll have to get some gaming on.  I understand there’s an autoupdate for Halo 3 coming shortly, so I’m going to try to refamiliarize myself with the previous version before the new version drops so I can make sense of the inevitable internet ramblings on why pre or post patch is better.

Abigail Update (The “Save” that Penny-arcade facilitated)

See original post here

Abigail’s Dad wrote:

Yesterday was her last ACTH shot no episodes in 11 days.  She is really a different baby, she has been happier and laughing more than I have seen her even before the shots.  She is also babbling more and doing this new thing where she screeches then waits a second and giggles at the sound she makes or the wince I make.  We have an EEG and appointment with the neurologist on Oct 2nd, which seems like forever away.  I hope the ACTH really did work, it seems to have at this point.

 

I also just need to thank you very much for your post on Penny Arcade. It made a huge difference on how fast we got a diagnosis and treatment. Most of the studies I read points to early intervention being the best way to fight this, like so many other diseases.  So thank you very much! I don’t know if you believe in god, but I pray for Marissa and your family. 

Fantastic!  This update from Abigail’s Dad is everything I was hoping for from this site.  Well, saves and soapboxes, I guess.  ACTH didn’t work permanently for us, but I’m glad it’s working right now for you.

Vigilance!  There’s a significant relapse rate with babies who are “cured” by ACTH.  Just ask Trevor’s Mom.

Roadtrip!

There may be an announcement shortly about a Marissa roadtrip to the vicinity of the Virginia Tech campus.  More on this to come.

As I’ve mentioned in other posts, Marissa doesn’t travel well.  We’ve got a long road trip that we have to take for professional reasons next year, so we’re going to start to “air her out” more on longer and longer road trips.  We’ll see how it goes.

Fairfax Spottings

Fairfax 2 at PAX. 

Official photography by Enforcer “Gspeezy” Greenspan

Halo Fairfax on the Glockenspiel (Boston, MA)

Courtesy nico from the Red vs. Blue crew.

He also Wrote Fairfax and Marissa a song!

Fairfax #4 - Madison, Wisconsin