Monday, June 25, 2012

Seventh Verse, Same as the First

Gracie had another seizure saturday morning.  I can't get into what that one was like, except to say that I'm reasonably sure she was at least partially conscious for part of it and nobody should ever have to stand helplessly by while their child's eyes widen in terror, over and over again.  Though certainly plenty of other people have.  Nonetheless, I'll be ready to buy that brain bleach whenever they come out with it.

Every. Fucking. Time. I let my guard down and think we have this squared away, this happens.  First, the facial, oh, it's probably Bell's palsy.  OK, no it's not, but her MRI is fine.  OK, one seizure, but her EEG is normal.  Fluke? Who knows.  Two more seizures, ok, we have to treat her.  OK.  Lots of kids have seizures and need to be treated and outgrow them, some really quickly.  Two MORE seizures.  OK, she just needs a higher dose, and a boost, we started her really low.  Now I am out of excuses.  Now I am petrified and my mind is going places it shouldn't go because nothing good can come from it.

The seizure guru is meeting with us tomorrow, in advance of our video EEG on friday.  I would prefer to wait until friday, rather than putting G through the trauma of two separate hospital visits, but multiple people seemed to think that there might be some benefit from coming tomorrow, so fine.  I'll come.  And we'll see.

I desperately, desperately want her EEG to show something, anything.  For the doctor to say, oh yes, of course, she just needs this drug instead, and we'll revisit things in a year.  And send us on our way.  I am worried it will be entirely normal and we will not know a single thing more than we know right now, and we will just have to throw darts at the dart board and hope we find something that works.  

I desperately, desperately want Gracie to stop having seizures, to never feel that terror again, to never miss another playgroup, and to start preschool in the fall without worrying that she'll miss a day a week, or worse, be seizing too much for them to even let her attend. 

And I desperately want to sell our house and move because even though I am still pissed off at God, I told him I would stop asking to sell our house if G was okay and she is decidedly not so He owes me.  If he's not going to help her stop seizing, then he should at least help us be closer to our families and the Y and her hopefully new school in the fall.  He owes her that much.

Thursday, June 21, 2012

Oh my god, kid, SERIOUSLY?

Gracie got a hair cut today.  She's actually usually done well with it, but lately she's been so obsessed with long hair, I was a little nervous about how it would go.  I spent a lot of time telling her that we had to cut it so it would grow faster (which is not a lie!), and she actually did okay.  She was CRAZY hyper and they had a really hard time sitting still, but we got it done.  Afterwards, she got to pick out a toy, and she randomly chose an oversized clear purple die with a regular die inside that rattled around (die, as in, one of dice.  I keep feeling like that word is unclear.)  Anyway, we got our balloons and lollipops (SERIOUSLY, this place is like Disney World) and were on our way.  We stopped at the grocery store on the way home, and got on the expressway to go home.

And of course- OF COURSE- within minutes of getting on the expressway, I heard her screaming from the back seat.  I whipped my head around, fully expecting to see her seizing.

Oh no.  She was not.

She had taken her oversized purple die and shoved it in her mouth, where it got stuck and she could not get it out.  She was freaking. the fuck. out.  And hello, ME TOO.

So I pulled onto the shoulder (which is not really a shoulder on the Kennedy, right?  It's like a passing lane.  You take your life into your own hands there), half-crawled into the backseat, and started trying to get it out.  It wouldn't budge.  She was freaking out and smacking me away and screaming and I had to keep ducking her blows and reaching for it.  When I finally really got my hands on it, I thought, holy shit, I am going to have to either break her teeth or dislocate her jaw to get this out.  Somehow, I managed to hyperextend her jaw juuuust far enough to get it out, at which point she started screaming full voice and I nearly vomited with relief.

If she had pushed her tongue back even one inch further, she would have turned blue before I got it out.  I don't even want to think about how long it would have taken me to figure out something was wrong. 

It's that fucking Keppra.  She is SO frigging oral when she's in this manic stage.  Just a few days ago, I took away her plastic Dora ring because she kept putting it in her mouth and I was worried she would swallow it or have a seizure while it was in her mouth.  She licks, she bites, and she puts all kinds of things in her mouth.  Including one stupid oversized purple die, which is now in the garbage.

But on the plus side, she was not seizing.  Win?

Monday, June 18, 2012

Hopefully They'll Be Able To Tell You Why

Since this phrase has been repeated many, many times by well-meaning people who only want the best for us, and especially for Grace, I'm going to put on my nurse hat for a minute.

Grace has seizures because Grace has a seizure disorder.  That is the "why".

Or, as far as we know at this point.  And hopefully it will stay that way.

Thus far, we have not uncovered anything else that could be causing her seizures.  Her neuroimaging is normal and the very cursory bloodwork we've done has also been normal.  I am not entirely ruling out a separate cause for both the facial weakness and the seizures (at this point, we're operating under the belief that the seizures cause the facial weakness, because it makes the most sense, but I can't let my guard down on that because I control the universe and continuing to keep a low-level worry in the background, like the apps that run continually on your phone with some work but not TOO much, will keep it from being anything else.) 

This is good.

Most times, when seizures are secondary to another problem, that problem is a very bad one.  It is almost always a bad thing to have another reason to have unprovoked seizures (meaning your electrolytes, your blood sugar, and your body temperature are normal, to name a few things, and you have seizures anyway.)  The only "good" secondary cause I can think of for seizures would be a minor cortical dysplasia that is easily resected without complication.  And even that requires brain surgery, sooo...yeah.

Sometimes, there is a family history of seizures- there is a relatively strong genetic link, so when a family offers that an uncle or a grandparent also had seizures as a child, we nod knowingly and feel unsurprised that the child also has seizures.  That is not the case here, as far as we know.  That is not the case plenty of times.  Only sometimes.

Think of it like diabetes.  If you knew someone who's child was diagnosed with diabetes, you might ask, why did they get diabetes?  And maybe there is a family history, and that is the "why".  Maybe they have a secondary cause, like a pancreatic tumor.  Many times, it is just the luck of the draw.  They have diabetes because they have diabetes.  And six months later, you probably don't wonder, "OK, but why haven't the doctors figured out why she has diabetes??"  She has it because she has it.  This is very similar.

One way it is very different is that many kids outgrow seizures. Some very quickly.  Some take longer.  Some are not that lucky and they do not.  Of course, we hope hope hope that Gracie will outgrow this, sooner rather than later.  And in the meantime, we're looking for any answers we MIGHT find, about how best to treat the seizures so they stop forever.  Hopefully we find that answer sooner rather than later, too.

Friday, June 15, 2012

Have I displeased you, you feckless thug?

More seizures.  Of course.  Why not. 

I spend every night with two different monitors turned up full blast, waking every hour, every time she clears her throat, and still, the seizure she had this morning would not have woken me from even the lightest sleep. 

You know what they say about atheists in foxholes, so although I am certainly not convinced of anything, I found myself standing in the kitchen today telling God that I was really fucking pissed off at Him and I wanted nothing to do with Him.  He's an asshole and I'm done with Him.  And then I did the next thing I always do in that situation, which was to beg my grandma to help Grace, because I don't believe in Him and if I do, I hate Him anyway, but I always believe in her.  But if she could help me, she obviously would have ("OH, you DON'T want her to have seizures?  Gah,, come on, don't be MAD...")

This is all very  melodramatic and YES I KNOW that there are far sicker kids in the world and families in far worse situations- I see it every single time I go to work, okay?  And I know there are many families handling far more with a lot more grace than I am handling this, but none of THAT crap stops Grace from having seizures, none of that changes the fact that she might not even be able to go to preschool in the fall, and none of that changes the stomach-clenching, icy fear that grips me every single time I walk down the hall to check on her in bed at night.  So I'm just going to spend naptime today wallowing in vitriol and melodrama.  And obsessively checking on Grace. 

Tuesday, June 12, 2012

Well, of course.

It only stands to reason that Grace had another seizures today, after I was stupid enough to hope that the next six months would be easier.

I should have seen it coming.  When she woke up from her nap on saturday, the left side of her face was not moving at all, even when I asked her to smile.  I can't remember the last time it looked that weak.  It made me nervous, but I pushed it to the back of my brain.  She was SO perfect otherwise.

Then she woke up at 3:45 am today, crying softly, but not screaming. She seemed to doze a little bit til about 4:30ish, and then she was up.  It is not TOTALLY crazy for her to still wake up occasionally at 4:30, but it's definitely not typical.  And 3:45 is out of the question, even for her.  But when I came downstairs at 6:30 (Stephen was with her.  I didn't, like, leave her to her own devices or anything), she was acting totally normal.  All morning long, completely herself.  She kept telling me how excited she was to go to school, and how much she loves it.  We got dressed and headed out.  She chattered away all the way there.  About two minutes away from the Y, she gasped loudly twice, and I spun onto a side street because it was obvious what was happening.  Three minutes later, it was over and we were on the way to my parents' house (they live closer) and I was on the phone leaving a message with the neurologist.

I never did hear back from her.  She's fired.  It's not even interesting enough to get into here, but I am a reasonable person, I don't require an immediate call back and it doesn't have to be from the doctor.  It does, however, have to be the same day.  And you don't get two chances with me on shit like that.


Gracie slept for two hours (not unusual for anyone after a seizure), and when she woke up, asked for lunch and snarfed an entire individual pizza.  She ran around and played with the toys and went in the backyard and ate all of Pop-Pop's raspberries, never missing a beat.  We got back in the car to go home, and she was asking if we were going to take Sammy for a walk when we got home, or if we could play outside.  Then she asked me, in a small quiet voice, "Mommy?  Why I can't go to school today?"

Fuck you, seizures.  Fuck you.

Monday, June 11, 2012

Three and a Half

For three years, I believed that nothing could be harder than the first six months of Gracie's life. 

Yeah.  Not anymore. 

I would relive the first six months of her life for three years straight if it would erase all the drama of the last six months.  Because that crap sucked.

In the middle of it all, though, have been some bright spots.  Gracie's turned into a total chatterbox, with a running commentary on just about everything.  She loves to read books to us, which is usually generally hilarious.  She's started acting out elaborate scenarios, complete with elaborate instructions for everyone else playing.

There were monsters in the backyard.  Obviously.

 She's become quite the dancer....her moves are, um, about as good as they've ever been, but she actually seems to have fun with it now.  Her favorite stage is the loading dock outside the Y, which she and her BFF are actually convinced IS a stage for their dancing show.

During a brief solo

  The other day, she dribbled a ball all the way from the front door to the back of the kitchen-the length of the house- and announced, "Mama, I'm a GOOD soccer player." 

I don't have any pictures of her playing soccer.

Her favorite activity is still making a huge mess.  I don't see that changing anytime soon.

The last six months have sucked a lot, and I'm glad to put them behind us.  Hopefully the next six will stick to make-believe, dancing, and messes.

Friday, June 8, 2012

Hey, I have an idea! Let's talk about food!

So guess what?  I tried making this again yesterday.  This time, though, I actually used black beans,a full tsp of chili powder, and added two diced carrots.  I didn't take pictures because I took pictures last time, but it really looked different, so now I'm annoyed with myself.  With the exception of the fact that the carrots were too crunchy, I was really happy with how it turned out.

So were the girls, apparently, since Grace ate three servings and Katie ate two.  Gracie even rejected ice cream in favor of another serving.  So!  New meal alternative that does not involve chick peas, paprika, or pasta! VICTORY IS MINE.

Feeling high on my victory, I made veggie chili for dinner tonight.  G was at a carnival with her Grammy, so she got McDonald's for dinner, but Katie snarfed her bowl (and mommy might have had three bowls worth....oh shut up, it's beans and tomato sauce.)

In other news which makes me happy, someone has ended her peanut butter and jelly strike, thank GOD already, you weird kid.

It helps that we ate lunch outside- we need to start doing that again, now that summer is here.  We played outside for over three hours that day, and ohhhh, the NAPS I got that day.  When we come inside for lunch, it just disrupts all the playing and we end up lazing around for the rest of the morning.  Also, I can leave the sandwich scraps on the ground and not worry about wiping the table too well.  Which is good, because with kids like mine, any mess reduction is a big, big positive.