Just An Ordinary Day

No appointments, no procedures, no tears.

No frantic phone calls, no eternal twenty-minute car rides.

 No fasting, no sleep deprivation, no Exorcist-impressions.

Just playing with the hose in the dirt and making a huge, muddy mess.

Thank GOD.

Well That Sucked.

You know how sometimes you worry about something sucking, and people tell you, ohh, it'll be okay!  And even though you know they're wrong and it's going to suck, you start to hope they're right and you're just being a pessimist?  BUT THEN YOU WERE RIGHT AND IT SUCKED?

So today's EEG!  Was. A. Disaster.  I knew it would be, and it wasn't about the sleep deprivation.  That part sucked for us but not at all for Grace.  She was totally happy to stay awake until midnight (and I"m pretty sure I fell asleep before she did) and when Stephen woke her up at 4am, it was relatively easy.  The part I knew would be ugly was the EEG itself.  Grace hates having her head touched at all- brushing her hair is an exercise in patience, to put it mildly.  Combine that with all the trauma between last week's MRI and this week's ER visit, and the kid is DONE with doctors and procedures.

They tried to make it easier, they really did.  She was just in that zone- you know when your kid gets in that brain space where you know that absolutely nothing- no talking, no patience, no bribing, NOTHING- is going to get through to them?  She was there.  We ended up wrapping her in a sheet while the tech stuck the leads on her head as she arched, writhed, kicked, wiggled her hands free and started scratching, bit, spit, you name it.  She was like Linda Muthaloving Blair.  I hoped once the leads were on, it would be okay.  It was not.  I was able to distract her for one episode of Dora and a few rounds of Cut the Rope (or whatever the stupid game is called), so they were able to get some good awake recordings, but she never fell asleep.  Not for a second.

Here's a little EEG background for the uninitiated: you need to be sleep-deprived beforehand for two reasons.  One, to stress the brain and make it more likely to have seizures.  Two, because it's really important to see the transitions between sleep and wake, and get sleep recordings.  Nobody would sleep in an EEG lab with wires hooked up to their heads if they weren't extremely tired, least of all a little kid.

You would think a three year old who only got four hours of sleep would fall right asleep in a cool, dark room, but then, you're not Gracie's mom.  It did not happen.  As the neurology attending who reads EEGs would later say, "she didn't even get DROWSY."  (and yes, you can even tell that from an EEG, which I think is so cool.)

So.  Her awake EEG was totally normal. Which is GREAT.  But the lack of any sleep recordings is an issue, because the most likely diagnosis for her would need some sleep recordings to confirm or deny.

...but maybe she doesn't have that at all.  She doesn't fit ANY classic pattern.  What we know right now is that her MRI and her awake EEG are both very, very normal, and that is supposed to be reassuring.  And in my rational moments, I know that is true.  If someone else were telling me this story, I would very, very sincerely tell them not to worry.  But it's not someone else, it's me, and I'm a neurotic mess.  So I feel a little better...but only a little.

In The Not At All Merry Month of May

To be fair to May, this started in February.

It all started with a picture*.  Gracie with her head cocked to one side, in the kitchen, wearing her Curious George shirt.  It made my heart stop for a minute.  One half of her face was smiling.  The other half was not.  It was the way she had her head turned, it was the angle of the picture, there was a reasonable explanation.  Both halves of her face worked.  I was being hysterical.

*(there will be no pictures with this entry.  I don't ever, ever need to see any photographic evidence of any of this again.  Sorry to disappoint.)

To be honest, I don't even really remember what happened after that, up until the morning when she came downstairs talking out of one half of her mouth.  It reminded me of Tina Fey.  My heart stopped again.  I had to go to work.  I was in a panic.  I couldn't stop thinking about it.  She had recently been sick.  It was Bell's Palsy.  Obviously.  I was being a spaz over a relatively common post-viral finding. ...But.  But but but.  It just wasn't totally right.  Her eye wasn't affected enough.  Something was wrong.  I was sure of it.  After some hysterical tears and deep breaths, a pediatrician appointment was made, and the three of us trekked out to a distant office, the office where our primary doc was seeing patients that day.  By then, her face looked fine and I felt like an ass.  I showed him the pictures, explained what I saw.  He never rolled his eyes or seemed to think I was being ridiculous.  I felt reassured to be taken seriously, but also had secretly hoped he would wave me off.  He looked her over, listened to both of us carefully, and reassuringly reminded me that common things are common.  That even though it didn't look like Bell's Palsy to me, that was the most likely culprit.  He was happy to order labs and/or imaging if it would make me feel better.  I did not want that.  He told me he needed to hear from me immediately if she got worse, and that I should give it time.  And so I did.

I gave it months.

One of my attendings casually asked me if she was all better.  I told her she was not.  She reacted without reacting.  I didn't like it.  I told her I thought it seemed better, but was still definitely there, especially when she was tired.  She conceded that was probably normal. A few weeks after that, we had a play date.  My friend, a lay person, commented that she could see exactly what I was talking about.  That scared me. 

The next day, I showed two pictures to the same attending- one where her face was entirely normal.  Because?  Sometimes it is!  Especially if she's actively working on it.  Then I showed her another picture, one where her left cheek was undeniably dragging down.  She reacted without reacting again, and I tasted bile.  She smiled at me the way I've seen her smile at a million different families, and tried to convince me she needed an MRI for my own peace of mind.  The next day, I made another pediatrician appointment.  Our wonderful, amazing, experienced pediatrician (gray hair is a requirement of all my pediatricians, but that is another story for another day) told me the duration had definitely exceeded his expertise, but that perhaps an MRI would be jumping the gun.  He wanted us to be seen by a neurologist.  I made the appointment myself the next day.  The day after that, I got a call from Maureen.  She told me our attending, the one I'd been talking to, had discussed Gracie with our retired chief of neurosurgery.  That her presentation had been bothering her since I showed the pictures on monday.  That our retired chief chastised her that after three months, Grace needed imaging, and she needed it immediately.  That she might have a Chiari malformation, and asked her how she would feel if Grace had a permanent deficit as a result of an entirely treatable lesion (what I would later learn of was the implication that there could also possibly be an untreatable lesion.  We'll just call that topic Voldemort.)

We got the MRI.  I can't even get into the details of the day.  I don't really care to remember them anyway.  I do remember that two of my attendings and a neuroradiologist were all over us, waiting to review her images as soon as they were done.  Maureen coming to tell us the scan was normal.  No Chiari.  No nothing.  Thank GOD.  Do I have to keep the neurology appointment, I asked?  Since her imaging was normal, what on earth could they possibly tell me?  My now-adored attending (I mostly adored her before.  Now I would give pedicures to the homeless if she told me to) gave me the same goddamn smile and told me yes, I needed to see neurology.

This morning at work, Maureen and I were rehashing last friday's events, the fears we both had that went unnamed.  How completely relieved she was when it was all done and normal.  How it was all a bad memory.  I said again that I wanted to figure out a way to get out of seeing neurology. What on earth could they tell me?

And then two hours later, the page.  Gracie had a seizure.  The drive to the suburban hospital where the ambulance took her (everyone should have a Maureen in their lives.  Seriously.)  Another attending going over Grace's MRI with a fine-tooth comb, and calling Maureen to tell her it was absolutely stone-cold normal.  Finding Gracie post-ictal in Stephen's arms, watching her gradually come back to herself.  Prancing out of the room in nothing but her underpants, shouting, "I happa go to work now!  Over DERE!!!"  Katie charming the entire ER staff.  Normal labs, and an EEG added to the now-clearly-necessary neurology appointment on wednesday.

Common things are common.  But between now and wednesday, all I can think is, somebody has to be the zebra.

Never a Good Sign.

As part of my ongoing effort to vary my childrens' diets, I try to make something new at least once a week.  I have mixed success with this, since I shop on tuesdays and have to plan in advance, and cooking takes time, and I hate hate HATE throwing food away.  Also I am not very creative so it almost always ends up involving chickpeas and spices in some kind of tomato sauce with pasta or rice and guess what?  NOT REALLY VARYING THE DIET.

Katie eats relatively well, since she is still a baby.  Gracie, though, is on a strict pasta with marinara, mac and cheese, soup, and yogurt diet, with the occasional peanut butter and jelly.  And not always all of that- some days, she will take one bite of pb&j and reject the rest.  Once I made her a veggie burger and she inhaled it and asked for more.  The next time, she took a single bite, politely pushed her plate away and sweetly said, "Mama?  Pwease-ah get me somefing better to eat."  (try not laughing at that, by the way.  YOU CAN'T.)

But the worst sign?  The one that tells me she will be having milk and yogurt for dinner?  Is when she comes cruising into the kitchen, stops dead in her tracks, and says, "Mama.  What is dat hoe-bibble smell coming from???"

She actually ate this, but see?  Pasta and chick peas.  Sigh.

Randoms to Remember

(sidenote: Curse you, Blogger.  I do not like change.)

Fun with Homophones:

me: Hee, Gracie, look at Katie's bare feet!
Gracie: Hee hee hee, mama, those aren't bear feet, those are Katie feet!

me: D'oh!!
Gracie: mama?  Why you say d'oh?
me: That's something to say when you're frustrated.
Gracie: No, mama, dough makes pizza.

Related To The First But Not the Second:

me: Gracie, what does Grammy call Katie when she takes her shoes off?
Gracie: Shoeless Joke!!

"Why do they sound the same but mean different things?  That's just SILLY."

First Words

Katie finally has some actual words.  And like her sister, her first word was identifying one of our pets.  Where Gracie started with kitty cat, Katie started saying (screaming, actually) dog just a week or so ago.  This morning, I got her out of bed and opened the blinds, and she saw Sam walking out to his pee spot and nearly lost her mind, yelling, "DAH!! DAH!!"  She also says night night, which is totally freaking adorable, and over the weekend when I asked her to tell grandma thank you, she immediately and perfectly signed it to her.  Genius.  Clearly.

"OK, so if we approach from the eastern front and bank left, then I'll never have to sleep again!"

The Best Thing of All

During the brief 30-45 minutes that Katie sleeps in her crib, I SHOULD be trying to get things done, things I cannot accomplish when the girls are awake.  And so I do: I crawl under a soft fuzzy blanket on the couch and sleep.  And then Katie wakes up and screams her brains out for half an hour because she is not done napping, but doesn't want to sleep anymore.  Over the weekend, though, I managed to get her back to sleep on my chest to finish her nap.  NOT ideal, but seriously, the girl is just awful from 2pm until bedtime when she wakes up and doesn't go back to sleep and I am also tired and so zzzzzz.....Sunday, we came back down to the couch, both got under the fuzzy blankie, and I immediately joined her in dreamland.  The sun was streaming through the windows over the couch, warming up the blanket, Katie was all warm and snuggly, and I passed the eff out right alongside her.  She napped for another two hours.  BLISS.  Gracie supported this effort by taking her own extra-long nap.  I cannot remember the last time I felt so clear-headed.  It was phenomenal.  Of course, they paid me back by both waking at 4:15 today, but I take my victories where I can find them.

playing together without screaming: another major example of winning

It's the little things these days.  I don't feel like I have anything really that interesting, exciting, or funny to record.  But I don't want to forget the little things.

That is the Middle of the Goddamn Night.

It's funny to look back and think how I thought Gracie was a bad sleeper because she woke up every day at 4:30 and took tiny short crappy little naps. 

She was a fanfuckingtastic sleeper.

I have learned this now that I have a second child, who goes to bed even later than Gracie, takes even shorter, crappier naps, and for the past two days, has woken at 3:45am.

I am so exhausted and frustrated and pissed off that I got two crappy sleepers, and you know what's not helping?  The smug people who are SO SURE my kids could sleep, if only I would do it their way because I'm just doing it WRONG.

And look, I get it.  We all get smug about stupid parenting shit because here's the thing: when our kids do something well, whether it's eat their vegetables, sit quietly in church, or sleep like a normal goddamn earthling, they do so because we've worked really hard at it.  We want credit for that, because it took thought and patience and consistency and it was not fun but darnit, we did it and we got good results.  But here's the other thing: sometimes?  You do all that hateful thinking and patience and consistency and the kid still refuses to eat anything other than corn, screams through mass, or wakes up at THREE FORTY MUTHALOVING FIVE IN THE AM. 

Nobody can make Katie sleep.  Just trust me on this one.  And consider this your warning, the next time you roll your eyes and say I just need to make her cry for FOUR hours every night for a month, I am not going to be nice about it.  I'm going to remind you that your kid eats nothing but bologna and grapes and hasn't had a drop of milk since you took his bottles away.  Don't make me be that asshole.

"The thing is, Katie, even *I* think you  might be taking this no-sleeping thing a bit too far."

Laziness Never Pays.

Every once in awhile, I get sick of blogging. It just becomes a chore, and I wonder why I'm doing it. It's just one more task on an endless list of responsibilities. But then I start reading through my archives and I'm reminded of something funny or sweet that I completely forgot about, and think, oh FINE I'LL KEEP BLOGGING. And after I lost my goddamn muthaloving iPhone earlier this week, I was reminded AGAIN that I need to keep blogging because I am not a reliable recorder of memories otherwise.

Because, see, I not only failed to set up iCloud (which took all of three seconds with the new phone, which I KNEW IT WOULD, by the way), it had been ages since I uploaded pics from the phone. So the pictures of Katie climbing into Gracie's frog potty? Gone. The videos of Katie and Gracie playing in the tub together and laughing hysterically? ...well, actually, I still have one, but I lost the BETTER one. The pictures of Gracie dyeing Easter eggs in the kitchen? NEVER TO BE SEEN AGAIN.

Luckily, my parents are not as flaky as me.

To me, the suckiest thing about the lost phone is the lost pictures.  The rest, meh, I'll figure it out.  But the pictures....ohhhh, that hurts.  So FINE.  I'll keep BLOGGING, even when it feels like a freaking chore, because it's one more place to come back and think, awwww, yeah, Katie WAS a total photobomber!!