A purple rumination.

Yesterday was Purple Day, and I was overwhelmed by the love.  Before I get into the negativity, and while I'm on the love, I can tell there are some new readers (because I'm obsessive and check my stats a lot) and you should know you're welcome. You should also know that you're welcome to comment. A lot of my friends have been making it a habit to email their comments to me, probably because of that post about not telling anyone on Facebook yet. But as you'll see, I should be out pretty soon -- people at work already know about Lucy's diagnosis, for the most part. Anyway, when I revamped this blog and decided that I'd start writing about Dravet, I opened up the comment section so that pretty much anyone could comment on the blog. I felt (and still kind of feel) alone out here, and if that's you too, come on and have a virtual cup of coffee.  Comments are always welcome and appreciated.  Unless, of course, all you want to do is swear at me. 

Of course, there was a lot of love, anyway.  The Supreme Court is finally hearing the marriage equality cases, and so there was love, love, love all over facebook.  It was red and purple everywhere I looked. 

Unfortunately, I kept having a bad feeling about March 26.  I had decided to make it a day of celebration, simply because I decided that bad feelings, unless you are my psychic sister, are hooey.

So I started my Facebook Advocacy posts (those were fun) and got our purple outfits, and a cake, and Travis and I had a special lunch and talked about how our special kid made us a special family -- stronger, wiser, and tougher. 

We did not, however, mention that it also made us more anxiety-driven and obssessive-compulsive.  But you only have to look at my "Doomsday Preppers" posts to know that. 

Anyway, the bad feeling didn't go away.  I fully expected to finally get our remaining genetics tests and finally come "out" on Facebook.  As it is bad either way, I felt like it would explain my feeling (de novo mutation = worse for Lucy; inherited mutation = better for Lucy, one of us has some guilt.)  However, they didn't come. 

But then, last night, we were all in her room.  Travis and I were both cuddled on the big beanbag, and we were reading to Lucy.  She was sitting on the floor, looking at us, and then she did it -- the same kind of posturing we saw this time last year.  It is what we read about here (scroll down to myoclonic seizures) and it is hella scary for us because we actually cannot say it was anything else.  We were both looking at her straight on.  She wasn't doing anything else, and it just pulled her into a totally unnatural position and squished her little face all up. 

It pisses me off to no end, because the doctors at the Hospital We Try Not To Go To But Sometimes End Up At In An Emergency Because It's Closer discounted these a year ago and then told me she didn't have epilepsy and tried to start weaning her off all of her antiepileptic drugs and then caused a REALLY BIG SCARY SEIZURE because she was, obviously, on far too low a dose of her AED.  It's really hard to get these on video because they happen so super-fast.  If you blink, they're over. 

This, of course, is coming on top of the super-scary events of Monday:  I had to go to a doctor's appointment at 4:00.  Travis had to work until 4:30 (he works at home, so he is literally right down a flight of stairs).  I wiggled Lucy's naps back and got her to sleep at 3:30, so I knew she'd be asleep until at least 4:30.  I'm a hero. 

I take Travis the baby monitor.  I go to the doctor. 

I return from the doctor at 5.  Lucy is still asleep.  She wakes up as Travis and I come up the stairs.  We hear one cry, and then it appears she goes back to sleep. 

When we go to get her from the crib (bedtime is between 7 and 8, so we don't need her to sleep too much past 5) she is markedly postictal.  Speech is slurred.  Eyes at half-mast.  She's in a fetal position, and doesn't want to come out of it.  Is disoriented.  Can't sit up.  Her feet and hands are purplish. 

We missed an EFFING SEIZURE.