It used to be that for me to feel hung over and sick on Sunday, I’d have gone to a raucous party the previous night.  Anymore, it just seems like too much rich food does it.  We’ve spent the week telling my inlaws and Marissa’s Auntie that Marissa would dictate what time we’d leave Grandfather’s 70th birthday party on Saturday, and not to expect too much, we’d probably be gone at 8PM when she normally wants to lie down and start to unwind.

She wasn’t in the thick of the party, so that’s probably what made the difference.  She hung out with her Mother watching television and playing with her stuffed animal flock, then with Marissa’s Godfather and I while we played Rockband in a too-small room.  At one point, when the party was thinned out a bit, Marissa was stolen from me, and rested comfortably with one of the family Matriarchs and another relation.  She was uncharacteristically shy when she saw the celebrating family, but was her normal chatty self when sequestered with immediate family.  Shy is not normally a word we associate with Marissa, so it was pretty obvious when presented by the swarm of people that wanted to love on her that she was acting differently towards them than before.

An added benefit of the late party was the Auntie’s willingness to take the baby overnight.  The Wife and I helped clean up between 10 and midnight, then bailed for the Casa, about an hour later than I wanted to, since I had the Marissa morning shift since 5:30 AM or so.  I guess I’m not as young as I used to be.  Eight hours of mostly uninterrupted sleep were had for the first time since Marissa’s last overnight in late March, pre-Grandfather’s cardiac event.  Sweet!  You’d think I’d be hyper from all the sleep, but it just accentuated the need for more, and the enormous sleep deficit the Wife and I operate with daily. 

Marissa’s back with us, has been for hours.  She squeezed in an extra nap this morning to recover herself from the stimulation last night, and seems to be none the worse for wear.  She’s a conundrum.

HMB Fairfax Stop #1

Apollo Running is the first recipient of the HMB Fairfax.  He’s not that far away, but it’s still not here!

Fairfax and his luxurious travel accomodations

The Pentagon is behind the beige building.

Fairfax in Studio B - Art Institute of Washington dropping some beats.

Thanks Apollo Running, for the pictures!  There’s a lot of Northern Virginia and DC that Fairfax hasn’t made it to- we do the best we can, but reinforcements are always nice! 

Friends in the Hospital

Bennett is in the Cleveland Clinic getting his own Infantile Spasms tale untangled as best as they can.  His IS isn’t quite the same as Marissa’s but it’s still a heartbreaking tale, like most of these kids.  If you haven’t checked out his blog, please do.

Bennett’s wearing an apparatus for a 72 hour EEG, which it looks like is going to go an extra day.  Marissa hasn’t had to do one of these, as for better or worse, her seizure activity has “cooperated” and been on full display during the EEGs we’ve had.

Ken waxed poetical about this whole process, and said:

“I guess it's almost like solving a murder, solving a puzzle, whatever...answers are usually not just YES and NO...they are generally somewhere in between.”

True enough.  Ken and I have a chatter in email, because AIM just wouldn’t work for us, given our schedules and our respective kids.  Regardless of the method of communication I feel like we’ve got a brotherhood, similar to soldiers sharing a trench under fire from some enemy that you can’t see and can’t really fight- you just have to survive the assault.

Look who they brought!  Best to you and yours, Lilly family.

Coming up later this week - Hopefully we’ll get on the right frequency with NATO Fairfax!