Wednesday, February 27, 2013

Oral Interpretation

For the Grandmas and Grandpas.

Addie, "The Whiting and the Snail," by Lewis Carroll.  I'm amazed by her poise here.  She repeats one small little line, which makes her cringe when she watches the video.  Her cringing makes me cringe.  I seem to have passed some perfectionism on.  Shit.  And, it was bound to happen.

Nolie with her best friend S., "I Will Not Hatch," by Shel Silverstein.  I hope it's okay I'm posting this here, seeing as it features someone else's kid (M., you'll let me know if I should take it down).  They were so nervous.  They so rocked it.

This is one of the best things about the girls' school.  Hundreds of kids participate in "Oral Interp" or "OI."  Being smart and quirky is cool.  One pair of girls did The Argument Clinic from Monty Python.  How great is that?  I wish every kid could have this experience, if they wanted it.

Tuesday, February 26, 2013

Pinpricks and Paper Cuts

I don't like coming here just to give updates, I really don't.  But before I can write about other things, I feel like I need to tell you what's going on.  The goings-on are sort of all-consuming at the moment, and also they aren't.  There is plenty of sand filling in around the boulders.  But I have to write about the boulders first.

So, Nolie:  The tests show Nolie is lactose intolerant.  This doesn't explain away the eosonophils in her esophagus, and cutting lactose out of her diet isn't totally eliminating her tummy aches.  But it's one more piece of the puzzle. I will make an appointment this week to take her to see an allergy person (but not a doctor, for now) to see if we can get more pieces.  She feels better for a while, and then she doesn't.  She sleeps through the night five nights in a row, and then is up the next night, ever hour, with stomach aches.  So.  There is always that big old oaf, the specter of what's really "wrong," bumbling around the house, poking me when I'm trying to do other things.  I kick it in the nuts and it goes away for a little while and skulks and I can sort of concentrate but eventually it starts bumbling around again.  Fucker.

And my stupid knee.  Another bumbling oaf, but he usually only visits right as I'm trying to fall asleep. The orthopedist thought for sure I had a torn meniscus or two, gave it an 80% chance.  But there was a 20% chance that it was the other thing, the cartilage abrasions, and sure enough, that's what I got.   Surgery next week, a long, long recovery, cutting out lots of activities that I love doing, probably for life.

Like running.

People are being super-kind and pointing out all the things I'll still get to do, and still I choke up every time I think about the fact that I don't get to run anymore.  I'm choking up now.  I wish it didn't matter, and in the grand scheme of things it really doesn't, I get that, but...still.  It feels a little bit like grief.  I've been reading about some who go back and do run after this surgery, so maybe I don't need to think in such black and white terms.  But it's a big risk, and could lead to more surgeries down the road.  So.  Choices to make.

Immediately, thinking about trying to get around for a few weeks with crutches and not being able to exercise and having to sit a lot just triggers every control-freak nerve in my body.  That's the thing that's keeping me awake at night.  I have students trying to defend their theses, and papers due, and Nolie to get better, and carpools to drive, and trips to take, and there is a good chance that all of that is just going to collapse in on itself.  Because in my mind, I'll take about two weeks to recover and then be hobbling around a bit.

But I guess I'm not 100% in charge of deciding how the recovery is going to go.  There are certainly hidden gifts to be found in all of this.  There are in all the other things happening in my life:  the going gray and curly, the not shopping, the choosing not to be so busy.  All so hard.  All also very good.

E. has been a rock through all of this, a big supportive rock, and thank God we're in a place where the marriage stuff isn't front and center or I might be freaking out.  I mean, more than I already am.

Then there's Emma.  Remember Emma, the disappearing cat?  We had to take her back to the shelter.  She never did come out from under the bed, except to sleep on Nolie at night.  And Nolie happens to be deathly allergic to Emma.  Like, sniffly, hive-y, trouble breathing-y allergic.  So, for Emma's sake and for Nolie's--and I can't really bring myself to make that kid any sicker than she's been for the last year--Emma went back.

It's just us and big, drooling Milo now.  I mean, yeah, he's enough pet for anyone.

Still, it's hard not to feel a little like Swiss cheese at the moment, a little bit full of holes from the things lost lately.  Little things, but pinpricks and paper cuts can suck too.

Thursday, February 14, 2013

Eosinophilic Esophagitis

That's a mouthful, huh?  Eosinophilic Esophagitis, or EE for short.  The biopsy says that's what Nolie has.  The doctor says that's what Nolie has.  I guess eosinophils are little white blood cells that flare up as allergic reactions, most likely in response to foods.

It's so hard to parse out all of the information and to figure things out in my head.

Here's what the doctor said:

Nolie's stomach and colon look normal.

The parasite is gone.

Her Immunoglobulin-A level, which was low before, is back to normal now.

We are still waiting on the results of the enzyme test, which will tell us how she's doing with lactose and carb digestion.

The biopsy shows the presence of these eosinophils in the esophagus, but they wouldn't explain Nolie's tummy pain or diarrhea.  He thinks maybe the parasite caused that, and then the strong antibiotics just had some bad side effects for a while.  We're noticing definite improvement in the frequency and intensity of her tummy aches, and we're not seeing frequent diarrhea at the moment, either.

But I should also say that I stopped letting her eat citrus last week, on a hunch.  She was getting ready for bath, and I offered to put a few drops of essential oils in her bath.  The scent she chose was orange. She immediately developed big red welts on her body from just a little bit of the oil in her bath and had to get out.  Citrus, I wondered.  No more citrus, we agreed.  So maybe not eating oranges every day is also making a positive difference.

The eosinophils, according to the doc, could also be caused by acid reflux (again, good to cut out those acidic oranges, if this is the case).  He wants to do another test on her where he shoots a tube--a pH probe--down her nose and into her throat over night to test for acid levels.  Small tube, no anesthetic, she'd still be able to eat.  To rule out GERD.

But I don't want to do it.  More on that in a minute.

His hunch (and I'm growing increasingly sure they're mostly hunches) is that it's not acid reflux, it's EE.  The trick is that EE usually presents in kids as them not being able to swallow and vomiting a lot.  We're not seeing that at all.  They have tons of food allergies and have trouble putting on weight.  They often end up on feeding tubes.  They often have eczema, which Nolie does have.  But otherwise, this doesn't seem to describe our girl.  And we'd have to join a clinic and have all sorts of other interventions, including putting her on steroids.

The cure, in my opinion, is beginning to sound worse than the disease.

My inclination, frankly, is to 1) declare oranges and tomatoes off-limits, reducing the amount of highly acidic foods she's taking in, 2) try eliminating dairy from her diet, since that's often a culprit in GERD and for eczema, and 3) try some alternative therapies, like energy healing, muscle testing, and relaxation techniques, in the case that things are being aggravated by stress.

More premature, anecdoctal evidence:  I've pushed yogurt on Nolie in the morning for a long time, thinking it would give her some protein.  She's always resisted.  Maybe she knew the lactose would make her sick.  I don't know.

Nolie also complains of knee pain, so I'd like to do some reading on inflammation and diet.

We may experiment with gluten down the road, too.  But one thing at a time...I think the worst thing would be to go completely crazy and try everything under the sun all at once.  I'm heartened that we've already seen a little improvement this week just from the citrus and dairy reduction, and I'll be interested to see what the enzyme tests report.

The doctor was not interested in any of my questions to this effect.  If I didn't want to do it his way, good luck, was pretty much the attitude.  Which makes me not so interested in him at the moment.

There's a risk here, of course, and that's that she could develop a much more full-blown case of EE, this new disease that affects so many now (according to the doc's website) and then we'll be sorry we didn't submit to the medical circus now.

I guess I'm willing to take that bet.

Totally open to your feedback, anecdotes, stories, impressions, and intuitions.

Sunday, February 10, 2013

Weird Things That, in Combination, Are Awesome

Remember that time?  That time when I really wanted a snack and so I ate pretty much every two hours, and it was usually chips and salsa or something bready or sweet?  And then I wonder why I'm so sleepy everyday at 3pm, so sleepy I want to die, and then chug a bunch of coffee just to avoid dying, and then wonder why I can't fall asleep at night and instead stay up googling strange health maladies?

Drinking coffee also really triggers a strong desire in me to have some sort of baked good.  Or an entire gourmet chocolate bar.

Then there was that time when I looked in my pantry and saw 25 half-eaten boxes and bags of things, many of them "health" foods, that sounded like a good idea after I read some magazine article extolling their virtues?  But then all I really wanted was chips and salsa?  And some of those bags of health foods have seriously expired and may have bugs living in them?  So I just pretend they don't exist and reach for some Greek yogurt and chocolate chips?

Okay.  That time is every two hours of every day.

Except today!
E. took the girls swimming so I could snack and read In Style in peace.  For once.

Today, I had a healthy snack.  I pulled out that two-year-old carton of prunes which, I know some of you love them, but are pretty much disgusting even when they're not two years old.  I understand their health benefits, but the texture.  Guh.  And almonds! which I eat every morning via my delicious whole-made granola but which otherwise are sort of meh.  And some green tea, which I would probably drink more often if it didn't get in the way of my coffee-chugging.

And goat cheese.  Not that healthy, but holy shit when you mix it with prunes and almonds?  Freaking heavenly.

It helps to eat on some lovely pottery, too, which I've been collecting piecemeal from the thriftstore.  Much to E.'s consternation, because when you collect piecemeal nothing really stacks right and may sometimes fall over on to your head when you open the cabinet door, and he also ends up blowing neurons and stacking bowls with plates or trying to put forks with cups.  IT'S NOT THAT HARD IF IT'S ROUND AND HOLDS SLOSHY THINGS AND DOESN'T HAVE A HANDLE IT'S A BOWL, FOOL.  Plus, how long have you lived here?  The coffee cups go in the cabinet ABOVE THE COFFEE MAKER.  Because I am a supremely logical person.  Welcome to ten years of marriage, let me give you a tour of where the dishes go.  Again.

To his credit, we had a lot of dishes there for a while.  We had the plain cream Pottery Barn dishes that were on our registry but that cracked pretty much on day two, making me instantly despise them for filling me with buyer's remorse, but which I then refused to let go of because they were expensive dammit, and then we had my great-grandmother's and great-great-aunt's china sets, which were also cracked and missing many pieces because those two ladies hated each other and pretty much every meal ended with somebody throwing a dish, which is why there is not one teacup left in the whole thing.  I'm having a hard time getting rid of them but at least they're tucked in a way in that useless cabinet about the fridge.

When people give you everything it is very nice, I love it, I am a whore for hand-me-downs, and I realize what I'm about to say is obnoxiously privileged but sometimes you want to choose your own things, you know?  Not with most things.  But maybe with dishes.  Thus the pottery collecting.

By the way, I didn't eat all those almonds, or prunes, or goat cheese in that picture.  That would have been about 3,000 calories, I'm guessing.  But sometimes it's nice to serve yourself more than you need with the possibility that you could eat it all if you wanted.

Saturday, February 9, 2013

Normal Day

One of the great things about going through an interesting time is that, at some point, you get a wee pocket of "normalcy" and you can just sink into it.  Addie is home from her sleepover, grownup and grumpy, resisting chores and talking back.  Just like any kid who has had 24 hours of fun and freedom from the rules of her own home would do.  Totally normal.

She's also walking around the house with a box on her head, intoning "Blockhead Blockhead Blockhead" in a robot voice.  Also totally normal.

Nolie is back to eating solid food and we've disconnected her electronic i.v.  Addie needed a little alone time so I offered to do a puzzle with Nolie, or do some coloring.  She wasn't excited.  Then I suggested (looking over at our obscenely dusty plant Marge) that she could go back to her preschool roots and gently wash the leaves of the plant.

Sometimes it's comforting to choose a familiar, old task when things have been strange.

Next, I'll probably clean some toilets or something.

Ah, normalcy.

Friday, February 8, 2013

Update on Nolie

I'm sorry for not posting in a's been a weird time.  I tore the meniscus in my right knee, for one thing.  Going to have to have surgery on that.

Also, I'm letting some gray hair grow in.  So prepare yourselves.  I know it's taking some mental preparation on my end.  That, and the knee, and well, I'm experiencing some personal growth around the topic of aging.  Also, around not being able to run for a few months.  FROWNY FACE, big time.

Most importantly, though, we've taken some more steps toward trying to figure out Nolie's chronic tummy aches and diarrhea.  Forgive any clinical tone or medicalia here but I'm still processing.

Remember how Nolie had that parasite (which I keep thinking of as "transvestite" in my head)?  And we had to give her that mega-serious dose of third-world-traveler antibiotics?  We were hoping that would knock off the tummy aches.  But it didn't.  And the diarrhea didn't go away, either.  So that triggered the next medical step, which was endoscopy+colonoscopy+biopsy.

This means that all day yesterday she got to stay home from school, watch tv, and eat popsicles, jello, 7-Up, and alarmingly large amounts of laxatives.  She loved it, up until about 3pm, when the laxatives really kicked in.  But even then she was a trooper, and we watched movies, plied her with clear, sugary beverages, and sat with her.  She feel asleep in our bed about three minutes after her head hit the pillow.  All in all, day one was much easier than I anticipated.

This morning was not so fun.  She couldn't eat even popsicles or jello anymore, and the laxatives were really doing their thing.  She was pale and dizzy and nauseous and uber-cranky (who wouldn't be).  We got to Children's Hospital--which, by the way, have you been there?  It's like theme-park-meets-four-star-hotel at that place.  Serious disco health care--around 1pm.  They have tv's in every room loaded with every Disney movie you can think of and every cartoon channel you can think of and by the time we got her in her prep room she was totally zoned out from low blood sugar.  She stopped answering everyone's questions and just tuned into Johnny Test like the television was a part of her.  An electronic iv.

Before the procedures, with Ella the Elephant, given to her by Children's.

The worst part continued to be the worst part, in my humble experience, which was when the anesthesiologist put the mask on her.  Unlike when two-year-old Addie had it done, six-year-old Nolie was like "fuck you and your lemon-lime flavored gas, this sucks" and spit and spit into the mask to get the taste out of her mouth and struggled and then held her breath.  Took a little while for her to go out, and then she went out, and they always look helpless and lifeless when they're like that and that pretty much makes me go catatonic with worry.  The anesthesiologist was a little, um, forceful with the mask, too.  Then, she woke up a little prematurely and we weren't in the recovery room yet and she was already panicked and bawling when we got there.  My jaw was sore I was clenching it so hard.

Long description, I know.

The short of it is that the scopes showed everything to be normal.  We saw pictures of the inside of her stomach and intestines, which, ew, gross, but yes, "normal" looking.  They took the biopsies, though, because there can be stuff going on there that isn't visible to the cameras.   The doctors didn't get specific about what those things might be, beyond the return of the parasite.

So now we wait for results, which should come in some time next week.

Of course, I felt total relief that there wasn't something big wrong.  Because that's the fear, right?  That your number is finally up and something real bad is finally happening?  As opposed to the bunches of little bad things that might accrue but then resolve and you just go on?  You fear you might have finally drawn the big losing ticket.  The tumor, the organ failure, the chronic disease.  This time, that doesn't seemed to have happened.

But then...have you seen The Graduate?  Remember the last scene, where Benjamin and Elaine climb on board the bus, all giddy and excited at having gotten away from the horrible wedding, but then they sort of realize what's ahead of them?  Well, that is exactly what hit on the drive home from the hospital.  Nolie bounced back almost immediately and was crooning fun.'s "We Are Young" in the backseat (I shit you not) and I was limp in the front seat, feeling like I'd just run a race.  I ate like a Sumo when I got home, and drank a few glasses of wine, and tried not to ask any questions or look anything up on the internet.

Still, ugh.  I'm writing this instead of sleeping.  I'm glad we didn't pull the big losing ticket, but I'm still wondering why my kid is sick, and wondering where to go from here.

We'll wait for the biopsy results and the blood work.  If those don't tell us anything, well then we'll be grateful.  But still wondering.  The doctors promise us a plan of attack, but of course you can't always just listen to doctors.  You have to figure some shit out.  Then the work begins.