At my house, we call this a "subtle hint."

Think he'll get it?

WEIGHT GAIN, Y'ALL!

Lucy gained 1.4 pounds.

In three weeks.

I KNOW.

We'd like to thank the Academy, Larabars, whole milk, and an increase in her activity level which is in turn leading to an increase in her appetite.  Not only does she eat three meals a day, but she also eats a snack.

Conspiracy theorists and nutjobs

Well, I have news, but it is not news.

I sent an email to the genetics counselor, and she let me know that the tests are done, and the report is being finalized, and they will be sending the results along next week. 

So . . . to me it sounds like she knows something, and isn't telling.  Or am I now the conspiracy theorist?

And, my husband's family came to visit last week.  They were on the road longer than they actually visited.  I will explain:

They are in ill health.  Very.  My sister-in-law doesn't walk (and yes, that is the correct word) and my mother-in-law has a lot of problems walking, and my father-in-law has mental health issues and no teeth and is in failing health.  None of them can drive long distances, and we live 7.5 hours away. 

In their town, there is a small town hospital.  And 45 minutes away, there is a Baptist hospital, which is actually the first hospital we ever took Lucy to when she was seizing.  The doctor there didn't even bother to examine her -- he listened to us and told us to put her in the car and take her 90 minutes by car to the University hospital, because there was nothing he or anything closer could do.  And the ambulance was out on a call and would be too long to get us there.  So we won't go to them, because we can't get Lucy to adequate medical care in adequate time.  (To add it all together, Lucy is 2:15 from a decent hospital at their house.)

We offered to meet them halfway at a town with a decent emergency room. 

And then, they said they wanted to come to us Easter weekend.  Friday night to Sunday midday.  So we said, "okay."  And then they said they got rooms at a local motel which I won't name but rest assured I tried to tell my husband to get them to go elsewhere. 

They would not.  It is a sad, sad, place.  Okay, it's a shithole. 

So they arrive on Friday.  (They make my 22-year-old nephew drive them.  Poor guy.)  We meet them at Cracker Barrel.  We eat.  They want us to come to their room.  We discover that the manager has offered them a hell of a deal:  You four pack yourself into one room with two double beds and it'll be the one room charge plus $10.  They can't pass it up.

We convince them to come to our house, because Lucy will be much more comfortable.  My SIL still says she cannot walk at all and therefore cannot navigate the stairs to the living room so she drives her Jazzy to the playroom.  We all sit in Lucy's playroom.  It's so fun.

The next morning, we have planned to go to the park so Lucy can enjoy the ducks, the Easter Bunny, have her face painted, and look at the kids. 

Travis gets a text Saturday morning that they want to leave asap.  The room is uncomfortable.  Nobody slept. 

So we go to the park (it's packed, natch) and they won't get out.  I tell Travis that we'll try it next year, because I don't want to be rude to our guests but jeeeeez.  So we come back to the house and we all sit in Lucy's playroom again.  It's so fun.  (This time, however, my sister-in-law WALKS into the house.  It's an Easter miracle.) 

Because it's also my mother-in-law's birthday, we do lunch.  We can't go out, obviously, because they won't go anywhere, so we have to bring lunch to them.  As options are now limited, we are left with Pizza Hut and Papa Johns.  We ask if anyone has a preference and they all say they don't care.  I opt for Pizza Hut because Lucy does have a preference. 

The pizza shows up and my nephew begins mentioning how much better Papa Johns is.  Lunch is just uncomfortable for everyone.  Travis and I surprised my mother-in-law with a cake.  My sister-in-law, the best and most awesome peach that ever lived, posted a picture to her FB page as though she bought the cake herself. 

And then they left.  Fortunately, Lucy is not yet old enough to understand, I hope, that they did something hurtful.  But I am going to have to be a little more diligent about protecting her from this in the future.

And there you have your nutjobs.  Also your assholes. 

This is my last nerve.

Still no results.  Also, they are coming for our EDCD screening tomorrow, and so I am nervous, and also today I am having a root canal, so the title of this post is marvelously apropos.

This is a big pile of whine.

I hate having people in my house, and I hate paperwork, and I really hate root canals, I think -- except I've never had one. 

It's not 5:00 here,

but if you're judging me and my glass of Pinot Evil, then you and I are not friends.

Lulu screamed for three hours before she finally fell asleep three minutes ago. 

And my in-laws are coming this weekend.  They don't understand toddlers, but they want to visit with Lucy. 

On an average day, Lucy falls asleep for afternoon nap somewhere between 1 and 3.  Today at 1, she was yawning and rubbing her eyes, so I put her down.  She screamed for 3 SOLID FREAKING HOURS.  My ears are still ringing. 

We had told the in-laws that she normally can't last much beyond 5:30 for her dinner (and normally she can't) but as she just now made it to sleep at 4pm, I doubt she'll wake before 5:15. 

AND they're here. 

Well, not HERE.  They're at their hotel.  And I am negotiating with Travis about whether to wake her at 5 or let her sleep a little and tell the people who don't speak toddler why the schedule has suddenly changed. 

Also, no results.  I am quite disappointed. 

So . . .

So we still have no genetics results, and it's still bumming me out, and I'm still wading through this paperwork which if I was being totally honest with myself (and if I wasn't kind of reeling from the seizures of the last 4-5 days) should have been done already but I'm having a hard time focusing.  Also, I do not want to have to call the geneticist (she told us to call if we hadn't heard by the end of March, and my agoraphobia is kind of ramping up a lot lately, so I'm loathe to make phone calls or make unnecessary trips.)

Really, this post is just to say that I hate everything.  Except Lucy, Travis, and you. 

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.