Tuesday, May 29, 2012

Let's Just Look At Some Pictures For Awhile

because so many aspects of the suck just continue to suck and I can't even recap them because they suck so much and I'm sick of it.

We went to the Memorial Day parade in my hometown.  It is crazy how people turn out for that, and just to show what kind of ties people have to that place, I sat across the street from my eighth grade constitution teacher and bumped into a guy I knew in first grade as he marched with his daughter (I mean, I knew him past first grade, that is just when I first met him.  He used to hum to himself while he did math worksheets.)  The other thing about the parade is omfg, it is like Halloween without costumes.  The same thing has happened every time we've gone, it starts and I think, aw, look, candy!  That's fun!  And then halfway thru, I think, damn, that's a lot of candy.  And then 3/4 of the way through, all I can think is, holy shit can this parade just end already because we now have a fifty pound bag of candy and Gracie keeps hiding under chairs and eating suckers.

But it's fun.  And also, the parade features a whole host of veterans going back as far as WWII and I think it's important to start teaching the girls now what it means to show respect for military service.  I always get something in my eye when the entire crowd stands and starts applauding as they go by.

Anyway.  Pictures.

NO GON'T TAKE MY PICTUUUURE.

What's that you say about candy?  Suddenly I am perfectly behaved.  How strange.
Katie Liberty.  Plus Skittles.
This is probably sucker number three, since she's eating in plain sight.
This was before the parade.  I just love that she's dressed like Wonder Woman.

Saturday, May 26, 2012

Yes. Of course that happened.

Katie slept from 7:30 yesterday until 6am today, so it was a very restful, lovely night to kick off behavior boot camp.

HAHAHAHAHHAHAAA.

Because, actually, of course, Gracie woke up puking at 3:30.  The kid is not typically a puker and you know what? Thank GOD, because oh man.  First of all, it completely enrages her.  You know it's coming because she starts to cry and cough, but then she starts screaming furiously, "NO NO NO NO NO!!!!"  So.  You know.  It's kind of hard to miss.  I went running in her room when I heard her yelling, helped her puke into a blanket (she has like eighty of them on her bed), inspected and made sure there was no wayward puke, and tucked her back in.  I laid with her for awhile and then went back to my bed.  She woke up twenty minutes later screaming, "MAMA I GON'T WANT TO...cough cough cough...*BLAP*."

So into bed with me she came. As we curled up together, I thought, gosh her feet are toasty.  Because you know what?  I am incapable of recognizing fever when you wake me in the middle of the night.  And unlike Katie, who rarely spikes a fever and when she does, has never gone very high.  She's not my fever kid.  Of course, it's my kid who seizes who gets sky-high fever.  OF COURSE IT IS.  Anyway, I laid there in the bed in total denial for about five minutes before she started ralphing again.  She then laid across my stomach, at which point I realized, oh hello, I am getting second-degree burns on my midsection, perhaps my older child has a fever right now.

The rest of the morning is an ugly blur of puked seizure meds ("I gon't like juicies anymore, they make me sick." Fucking fabulous.), refused motrin (she used to love it!), my mom bringing us tylenol suppositories and taking poor neglected Katie for the day.

Eventually, the tylenol kicked in, and she perked up enough to play and eat lunch.  I thought, yay, the worst is behind us! Because Gracie likes to get dramatically sick (even if you exclude recent events), but usually recovers very quickly. 

...but no.  She's been spiking sky-high fevers all day, and for dinner ate watermelon and a few bites of toast.  She had a 104 fever when I put her to bed.  She did fall asleep immediately, and I attempted to trickle motrin inside her cheek.  No.  Dice.  Nuh-uh, no way.  Spitting, rubbing her tongue on the blankets, NOT HAPPENING.  Then Maureen had the idea that we should try another flavor- our ibuprofen was grape, just like her Keppra.  So she went and got roughly eight million flavors of ibuprofren, plus some delicious junk food for me.  I have snarfed the junk food, but Gracie has rejected the bubble gum ibuprofen with extreme prejudice.  Since those jackasses refuse to make suppositories, we are stuck with stupid tylenol. 

She is sweaty and restless and miserable.

Here's hoping the fever at least does its job, because I am not sure how much longer I can get away with the suppository route...

(sidebar: Katie gets a break in behavior boot camp because she slept when  I needed her to the most.)

Friday, May 25, 2012

Shenanigans, for REAL.

So there's this THING about running (at least for me)- it takes months and months to build endurance.  Don't even get me started on speed.  SOOOO long.  But stop running?  And all that hard work is gone in a week.  I mean, okay, not ALL of it, but a LOT of it.

You know where else that is true?

...here's a hint.



Behavior.  ZOMG.

You work and work and work at making your child behave in a manner that resembles a human being.  A small, wild, nose-picking human, but at least a human!!

And then they go and have all kinds of medical dramz, and maybe you feel really sad about it and want them to be happy.  Maybe the routine is all thrown off.  Maybe you are so fracking exhausted from worrying about them that you let things slide.  Things you would normally NEVER let slide.  You give them the distinct impression that they are completely and totally in charge of everything.

Ignore ALL the rules!!!
So, for this lovely holiday weekend, the girls are in boot camp.  Well, mostly Gracie, because Katie is too little to really get it, although she's been plenty buttheaded lately, I CAN ASSURE YOU.  And I can assure you of that at any time of the day or night, because she will be awake which means all of Chicago is awake, too. 

Hopefully it gets us somewhere.  Because seriously?  Parenting is exhausting shit, but it is ten times more exhausting when your child is behaving like a manic sociopath.

Sure, it's cute NOW, but just wait til she leaves for the Horn of Africa.

Monday, May 21, 2012

On a Positive Note

Between a certain summit being held in our city this weekend, requiring INSANELY long work hours of Stephen, and being in the pit of medication administration hell, I have sooo much that I feel like complaining about right now.  But I am so tired and frustrated and just sick of feeling sad and mad and having that itchy, unpleasant, "life isn't right" feeling, so I'm not even going to get into any of it. 

Because really, what I want to remember years from now and what I want to think about now is the amazing response we've had from so many people.  Like the fact that every time we have walked through the doors of my hospital, we've been treated like royalty.  And, you know, yes, we've had some special treatment.  But the most amazing parts haven't been the special treatment.  It was the EEG tech who patiently rocked Grace and sang her a song about a little squirrel in a thick Russian accent while Gracie thrashed and spit and bit at the air, completely terrified during the entire EEG, the MRI nurse who found movie after movie for her to watch while she waited her turn (and asked for some oral Vers@d for her when she was freaking out.), and the ER nurses who understood what it's like for a child to be post-ictal, and carefully and patiently approached her while she cried.  And the way everyone I work with has asked about her, encouraged me to stay home with her, and asked how all of us are doing.  And my old boss, submitting initial FMLA paperwork for me.  My OLD boss!  She's not even responsible for me anymore!  And the massive prayer chain that started on Facebook when all of my December mamas sent out the call, I am still overwhelmed.

...and the Y.  *sigh*  The Y is Gracie's favorite place in the world.  Every day she asks if we can go to the Y and play.  She loves her tuesday morning playgroup and all her friends, and even though she says she doesn't want to go to school, she wants to go to the maze and play, we get to the classroom and she runs after Lucy and they sit and have a tea party together, and you know, even the teachers agree, my little late talker really started talking a blue streak when she met Lucy.  And so when this all got really bad, and it all started in the maze at the Y, I was petrified.  I was so scared they would tell me they were so sorry, but they just couldn't take the chance and we'd have to keep her home.  So I called the early childhood coordinator over the weekend and left her a voicemail with the details of what happened after we'd left, how we'd started seizure meds and she wasn't having seizures anymore and I would call her on monday to discuss details and be sure to stop by if she needed me to do that.  But it took me probably an hour to work up the guts to pick up the phone today.  I was actually shaking, because I was so afraid of what she would say, and then what would I say?  And wouldn't you freaking know it, she's OFF today.  Their big triathlon was this weekend and she took today off.  And I started to leave another message but her mailbox was full.  So I sat and fretted and wondered what to do- I couldn't possibly bring Gracie all the way there and have to turn around and come home.  And then my phone rang, and it was the woman from the maze, the woman who came and got me in the gym on thursday when it all started, and who called us again on friday to make sure everything was okay.  Calling to say that they'd gotten my message and talked to Gracie's teachers and everything was fine, and if I wanted to come in early on tuesday and talk to them, they'd be ready to talk to me.  And, of course, I started sobbing like a little girl.  Which, really, was maybe not the best way to thank my new best friend, heh.  She was so perplexed,a nd when I finally choked out that Gracie had been asking about going back to the Y ever since thursday, and that I'd been so scared they would say she couldn't come back, she gasped and said over and over, "Oh, no no, oh, don't cry.  Don't cry!!  Of course she can come back!  That's why we're here!  If you can't go to the Y, where can you go?!"  and I just kept snurfling and hiccuping and generally feeling like a dork and finally just got off the phone. 

It was smooth.  Really, really smooth.

Let me be totally clear: I would much rather have spent the rest of my life having only a vague idea about the amazing, awesome people I have around me.  But now that I know, I'm really, really glad.

Thursday, May 17, 2012

This is Not Happening.

Gracie was so naughty this morning.  She was in time out twice, had her playing-on-mom's-phone privileges revoked, and had a toy put in time-out, all before 9am.  What on EARTH? I wondered, and piled us all in the car to go to the Y so I could work out and they could play and we could all reset ourselves. 

The girls were excited to go play and I was excited to find the gym nearly empty.  I jumped on an elliptical and started going.  After four miles, I thought, one more mile.  I signed them in for an hour.  I'll do one more mile and then work abs or something.  I thought about just going to get them, but then I thought, nah.  Just minutes later, there was the woman from the play space.  Gracie doesn't feel good, she said.  She's lying down and she won't respond to us.  We all knew what was going on, including the woman who came to get me.

Random side note: I cannot say enough good things about the people who were working at the Y today.  They were all calm, cool, and collected, and very concerned about helping us to the car (offered to call the paramedics, which I declined).  Reassured me that Gracie was welcome back as soon as she was feeling better- this was a big concern for me, because I needed to worry about something unimportant- Gracie loves the Y.  She loves her play group and she loves the play space and if they said they couldn't take the risk, it would break both of our hearts.

And speaking of my breaking my heart, Gracie's BFF from play group was not there on tuesday.  She's been asking about her ever since, and who should walk in just as I had G on my lap, clearly seizing?  Ouch.  My heart still hurts, thinking about it.  Gracie never noticed, but goddamnit, that's her favorite person in the world and she should have been playing with her, not sprawled out unresponsive.  Fuck.

Anyway.

We went to my parents' house while she recovered, and I called the neurologist.  We agreed it was time to start meds.  Said we'd touch base in a week and I'd follow up with her in person in three months.  We went home.  It was naptime, and both girls immediately fell asleep in the car.  We got home and I parked in the garage to let them sleep.  And that is when Gracie let out a blood-curdling scream and the second seizure started.

I can't recap it, don't need to.  But it was so, so much worse than the first one, and as I screamed and struggled to get her out of the car seat and Katie screamed because she was startled and then scared, I just kept thinking, this is not happening, this is not happening, this is not happening.

One ER visit and two pharmacy trips later, I remain terrified.  Hypevigilant.  She's in her own bed right now, but will move into my bed when I go to sleep.  Or "sleep", I should say. 

This is not happening.

Sunday, May 13, 2012

Cree. PEE.

Remember this?

I had actually  mostly put it out of my mind.  Until last night, that is.

I was sitting on the couch, minding my own business, watching the last Harry Potter movie, feeling a bit unsettled because I am a huge weenie and it is not difficult to make me feel unsettled.  Eating pretzels.  Thinking about how I should go to bed soon.  Gracie called out to me.  It was about 8:30.  This is not unusual.  We need to eliminate her nap and until we do, this will most likely keep happening.  I prefer going into her room multiple times before bed over giving up her nap, though, so I won't be doing that anytime soon.  ANYWAY.  I went in her room, where she very calmly said to me, "Mama.  I was trying to fall asleep, and someone came in my room."

I'll just let that sink in a minute.

And another minute.

OMG I KNOW, RIGHT?????

In the interest of full disclosure, before she said that, she told me she was trying to fall asleep and a bee flew in her ear, which freaked me out and made me think she'd had a seizure, so I told her to repeat what she'd just said, and that is when she told me someone came in her room.

Previous owner.  I am TELLING you.

Someone told me today to burn rosemary and sage in the house, because it will banish spirits, but she wasn't sure if it would banish ALL spirits, or just evil ones.  And I don't want to banish all spirits, because I have some other people I'd like to keep around.  And heck, if it's the previous owner and she's trying to HELP and not trying to be MEAN, then I guess she can stay too.  So I have asked someone who I think will know and I am waiting to hear back from her.  I'm sure y'all are waiting with baited breath to hear what she has to say.

It all reminds me of the best true-life ghost story I have, the one about our next-door neighbors when I was growing up.  They had three kids, with a daughter in the middle.  When the daughter was maybe four or five, the mom woke up in the middle of the night because she'd had a dream there was a lady standing in her closet and it freaked her out.  As she was trying to get back to sleep, she heard her daughter crying, and when she went into her room to see what was wrong, her daughter told her, "I looked in your room and I saw a lady standing in your closet."

I leave you with that.  Nighty night.

Friday, May 11, 2012

Adventures in Couscous

Here we go again.

So tonight's introduction was couscous.  I refuse to eat the really fine-grain couscous, because I stopped eating sand when I was three.  I have been searching high and low for giant couscous and shockingly, finally found it in the organic aisle at Jewel.  This shocked me because Jewel sucks nuts, but that is another story for another day, and really not very interesting (in short: OVERPRICED ZOMG).  It sat in the cabinet for a few days, but when I realized I had no idea what I wanted to make for dinner, it seemed like today was the day.

I didn't take pictures while I was cooking because I didn't think I was making anything that impressive.  In short: thin-sliced four carrots, and sauteed in olive oil for awhile.  A long while, because my girls don't like crunchy carrots.  They even started to turn brown on the edges: YUM.  Then I added a drained can of chick peas, half a teaspoon of smoked paprika, a few sprinkles of cumin, and a dash of salt.  Cooked awhile longer.  Added the box of couscous and once minced clove of garlic, toasted that for maybe two minutes?  Added the water.  Realized I was maybe short on flavor, added a veggie bouillon cube.  Covered and simmered til all the water was absorbed.

It looked like this:

I thought it was really, really yummy, but I was not at all sure the girls would even willingly try it (well, no.  I knew Katie would try it.  I figured for sure Gracie wouldn't touch it with a ten-foot pole.)

But then...







They both willingly tried it!  And?

She liked it enough for a symmetric smile!



Not pictured: the way she kept furiously signing "more".

It was a win! ...except? GUHHH. Pasta and chick peas!! AGAIN.  

And? Also?  Balls of sticky pasta?  Feeding them to a toddler and a preschooler?  Right.  Genius.  I'm gonna be finding little couscouses all over the kitchen til they're in high school. 

So.  I'll probably try it again.  Except I'll use bulghur instead of couscous, and I'll at least KNOW that I am not doing anything new.  I keep going back to this, I think, because it is a vegetarian twist on a Slovak/Hungarian dish called rice chicken that I used LOVE when I was an omnivore.  I will post about THAT one day, next time I make it, because it is really yummy and mild enough that kids will like it too and even though it's very time-consuming, it is dead easy, very hard to screw up.  Anyway.

Maybe one day I will *actually* try something new.l  For now, though, they're eating something other than spaghetti or soup.

Thursday, May 10, 2012

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.

Wednesday, May 9, 2012

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.

Monday, May 7, 2012

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.