Monday, February 28, 2011

Kerfuffled, or Why I'm Working Late

I have cute weekend photos, but haven't uploaded yet and will be working late tonight so am using the material I have available during a quick break...  I offer, instead, a snapshot of my inbox.  (Re-arranged into chronological order, for your reading ease).

There were originally two separate email threads. The first was from my sister, linking to this:
Which is relevant because of its pun-tastic comment section and my mom’s later email.

Later, from my brother:
Alright, a quiz.  Which of these words/phrases do you know?
mirabile dictum = ‘strange to say, marvelous to relate’  
sui generis  = ‘of his, her, or of their own kind; unique’
sororal   = ‘of, pertaining to, or characteristic of a sister or sisters; sisterly’           
abattoir  = ‘a slaughterhouse’      
lamarckism = ‘a theory of organic evolution asserting that environmental changes cause structural changes in animals and plants that are transmitted to offspring’ 

Fun words/phrases I had to look up in my very good book [Extra Lives] about why videogames matter.

[To our sister]--  Lamarckism (or something close) is what I’d come across prior to Thanksgiving:  I mentioned to [sister's fiancĂ©] an article I’d read (in ????) wherein the notion of environment affecting DNA was mentioned.  He was dismissive and the article was one of many read in the few months prior, so I was vague myself.  According to Wiki it’s not part of modern evolutionary synthesis, and the closest I found was Epigenetics - refer to aforementioned fuzziness.  Not a biologist.

From me, showing off my mad word skillz, with the yellow highlighter:
Not claiming I’d roll ‘em out in everyday conversation though.  Mirabile dictu sounds enough like miracle (to) dictate (relay) - I’d hope I’d pick it up from context.  Did he use kerfuffle?  I heart anyone who can work kerfuffle into a paragraph.

Also from me:
NPR did a thing a bit ago about neo-lamarckism.  Apparently the theory is making a comeback.

From my brother:
YAY! K hearts me!  I get abused at work for using fun words when sending FU emails to contractors.  So a (short-lived) game was started wherein we got points for inserting into emails or phone conversations’s word of the day.  One day the word was kerfuffle and I won 3 points.

From me:
I WANT TO PLAY!  Also, I just googled & couldn’t find the NPR link (not that I looked TOO hard) but suffice it say there was a thing, that I heard, at some point, on some channel, about, ya know, the environment, and evolution.  They cited a couple non-darwinesque evolutionary examples, none of which I can recall now.  Such is the weight of my comment.

From my brother:
yeah, that’s pretty much what I went to [sister’s fiancĂ©] with. he scoffed. scoffed!
re: the game: it stopped because I uber-enjoyed it, won the most points, and was generally Too Eager To Play With.

From me, to my brother:
No one wanted to play with you?
I’m shocked. shocked!

From my mom, 47 minutes later:
So the whole kerfuffle thing has a bewitching circularity in this little exercise. Mirabile dictu! – back to the FAIL (un)safe plug in the shower … a little dry(er) sense of humor and we’re all shocked.

And here’s a description from the Urban Dictionary for the verb to kerfuffle: “To rile up, confuse, or anger a cat (especially kittens) into fluffing up.  Sometimes results in a cat spazzing out and running around the residence.”  In other words, the cat is shocked, shocked.  Is this what Madera does?
[ed's note:  Madera is my brother’s evil hissy cat]

From me, to my mom:
How long were you working on that, exactly?

From our sister:
I <3 Mom.
I knew she would pull through for me.

Thursday, February 24, 2011

This is why we quit the first time

We just re-joined Costco after a long absence.   
This was one of Matt's recent purchases.
I just noticed how dirty my wine glass it.  Blech.
Lest y'all think I drink freakishly small glasses of wine (in which you have clearly not been paying attention), that is a two pound jar of garlic.  TWO POUNDS.  I have mixed feelings about this. 

Pro:  Costco is exceedingly dangerous to both pocketbook and waistline.  Be grateful this was the only questionable purchase.

Pro:  Your husband stops by Costco on his way to work.  There is no expectation you need to go instead so shut yer yapping already.
Con:  TWO POUNDS?!?!

Pro:  Garlic Shrimp, Garlic Bread, Cheesy Garlic Bread, Garlic Mashed Potatoes, Escargot and a baguette, Lemon Garlic Chicken with mashed potatoes, Garlic Fries, Cheesy Garlic Fries, Garlic Ice Cream
Con:  Mommy's waist.  Garlic tastes better with butter and carbohydrates.

Pro:  Super-mom!  Able to knock down muggers and burglars with a single breath.
Con:  Collateral damage.  Innocent passers by will be flattened.

Pro:  Economical!  No need to ever buy garlic again!
Con:  Food Poisoning.  By the time we get to the half way point, we'll have grown a nice colony of botulism (botulii?)

Pro:  No vampires.
Con:  [Insert funny Edward/Jacob reference so people will think you're cool.]

Pro:  According to the inter-webs, this much garlic will stave off mosquitoes, acne, whooping cough, cancer, high blood pressure, high cholesterol,  and will cure a variety of intestinal ailments I am much too kind to describe here except to say worms were mentioned at one point. 
Con:  It's doubtful whether the medicinal benefits of the garlic would overcome the health problems triggered by eating an entire loaf of bread and stick of butter daily, for a year, which would be necessary to facilitate the eating of said garlic.

Pro:  My kiss-ee will also have garlic-breath. 

Wednesday, February 23, 2011

Shiny Pink... Lava

Other miscellaneous photos from the weekend. 

She was clearly confused by this top.  I have completely abandoned the pretense that my daughter wasn't to wear pink (whoistheprettyprettygirl?!) but ruffles AND sequins are new.

Where are the sleeves, Mom?  
It's obviously been a long winter.

It also must have been confusing not to have jammies on, for once.
Because this is usually how we roll:

We ended up not going to park on Sunday after all - neighbor friends came over.  I caught them all lined up watching ONE play ds  - including my girl.  Which was adorable  Though I immediately kicked them outside because it was also ridiculous.  So they then immediately started swinging big sticks at each other as they explored the knee deep mud lava pools.  *Boys*

Tuesday, February 22, 2011

Of Bears and Badgers and Bananas, Oh My!

So my panic yesterday was partly triggered by the fact that I worked late and both kids were asleep when I got home.  Worst Mom Ever.  Also, mostly, because when we were trying to find an overdue library book for the boy I found missy's flash cards on the desk and could not remember the last time we used them.  But if we're going to play fair, my girl did spontaneously sign banana at the store over the weekend as I was muttering about where the heck they were (fyi, non-parent-store-owners, everyone else keeps them front & center) - something I wasn't totally convinced she had the finger isolation skills to do.  And tonight, as I was putting her to sleep, she asked for milk.  She also signed food but she was clearly not signing sleepy baby or goodnight, as she is otherwise wont to do.  And she said thank you after I got it for her.

So there's that.

Not a total non sequitur:  she is VERY particular about her books.  Her two favorites, by far, are Bear Snores On and Big Red Barn.  Anything else may or may not acceptable on any given night.  She'll grab my arm and pull it in if she deigns to listen, but will either push away or, best, take the book and toss it if deemed unworthy.  I'm not trying to encourage this but... funny.  She's also quite particular about sitting square on my lap - I'm wondering how to sign and read at the same time as I hold the book, and her?  Not that I could even remotely translate, but I could probably hit a few of the major nouns:  Bear. Sheep. Cow. Mouse.  Moon.  I've been signing 'cat' for eons but she thinks it's a finger wave, because she won't turn around to look at me whilst the books are open, so I end up signing it in front of her. 

Also, the Bear book involves a badger and a mole - when else will those signs come in handy?  How do you explain the difference between rodents to a 2 year old?  And?  There's a slight chance she thinks the Bear is a dog.  Huh.

Complete non sequitur:   Genes Day was approved!  Though with any luck I will be drinking mimosas with my family on 3/21 instead of working (spring break).  The coward in me is a little relieved I'll miss the fuss - or, to be precise, the sure-to-be emotional turmoil of wondering why various people were too cheap forgetful to participate when it is so very very important to me and the sure-to-be-painful overheard comments near the coffee machine. 

Who are we raising money for again?
For the.... 

The chances of anyone answering this in even a remotely politically correct/people first way are microscopic.  I do have some fabulous one liners ready but they are so devastating in nature I'd surely be immediately terminated for gross insubordination (Kidding!  Mostly.).  But still - a step forward.  Cheers!

Monday, February 21, 2011

Panicky Blog. Not fun. Fair warning.

I used to think of my job as the lottery job.  You know - the one you'd keep doing even after?  But then came the kids and while most of the time I still love it, I do end up whining about splitting up my precious minutes.  At my free random-vendor lunch last week someone was worried about their dad, who'd retired, and what was he going to do all day?  I don't think I'd have any problem filling my day.  Mostly the usual stuff - gym, books, little volunteerism, definitely more TV (I jest!).  I also have a love/hate relationship with craftiness, but it's mostly born of jealousy.  Would love to know how to hem a skirt (or, heck, sew on a button), or do frou-frou things in my girl's bedroom. 

Or cook.  Love to do the big meals - Thanksgiving, et al - and the ever more rare social dinner but cooking for young kids is...painful.  My boy actually requests cereal & eggs. Not yummy stovetop scrambled eggs with cheese and tomatoes and butter...eggs in the microwave, cooked till rubbery.  [Yes, I'm sure this is a comment on my cooking. Thanks for making that leap.]  I'm a firm believer in the wholesome family dinner, veggies 'n all... but darn it if cereal isn't a lot faster.  And look!  The kids are occupied - I'll just take a peek over at this one site.  This, and the amount of TV they watch, count among the many hypocrisies in my life.  Also, SOMEONE, who shall remain nameless, seems to have developed some inconvenient taste buds lately.  I did, actually, make her carrots last night.  She screwed up her face and pushed the plate away.  I offered her the rejected orange I'd lovingly cut up at lunch - she tried to cover it back up with the plastic wrap.  That cracked me up.  Not only did she not want the orange, she was going to re-wrap it for me.  Stinker.

But mostly, I fret about her language skills.  We need to be doing SO MUCH MORE.  I should have taken a signing class and be narrating her day away.  We need to be going thru her flashcards daily and working on her letter sounds.  We should be doing more OT stuff, so that she has the fine motor skills to actually sign back.  I had brief passing moments like this when she was on the verge of crawling, and then walking, but I was never concerned she wouldn't get there.  --This-- is constricting my breathing.

I don't think this is one of those things that will come naturally, even if a bit delayed. We don't even have "mom" yet.  This is all on us and I feel like we're failing her.  She's going to be 3 in five months.  Even if we end up mostly signing, we need to be working on her vocabulary constantly.  And nevermind communicating with her extended family.... 

So?  We do more.  (much MUCH more).  Just do it.
And that is my sloganized pep talk of the day to myself.

Sunday, February 20, 2011

The Definition of Insanity

Spending the weekend being torn about spending quality time with the kids, minimizing the domestic filth, feeling guilty about time you should be working, while concurrently neglecting items #1-3 because you're trying relax from all the stress of not doing items #1-3 by spending too much time on the $%^&* computer reading about other people's quality moments not, by definition, a super fantastic way to spend 48 hours.  So my new motto is to just embrace the chaos.  That should get me through Thursday, at least. 

Also, in my online meanderings, I was reminded again of the fact that my kids will neither remember nor care that the floors were clean.  They will remember making fresh squeezed orange juice: 
 (bizarrely, one of this guy's favorite things is the juicer.  We make a LOT of lemonade in the summertime).

He may or may not remember riding his bike on the sidewalk while I fussed in the garage and then got on his razor-thingy and nearly broke both it and my neck.  Pretty sure those things have a weight limit.  They should probably have an age limit too. 

With any luck he will NOT remember opening the door and letting this one out. 
Dreaming of Freedom. 
Who despite being effectively a three legged dog, thanks to a torn doggy-tendon, can move like lightening should the opportunity present itself.  One of our neighbors luckily came to a very very hard stop, thus eliminating the potential  memory and presumed life-long guilt of letting the dog out only to watch her be immediately smushed by a SUV.  Though I will confess I was furious (because said neighbor came to a very VERY hard stop) and sent him inside for a time out because we have told him a gazillion times to be careful opening that door and I was incensed that he nearly created the aforementioned lifelong guilt, and also because I happen to like the middle dog quite a bit.  And also, the vet bills.  Because after running up $10k in car repairs and annual health insurance deductibles in two months, the real cherry on top of that mess would be the doggy ER. 

This one took a long late nap and woke up cranky so we didn't get to the park but I think we will today.  Two weeks ago it was ten degrees; today it's supposed to reach 70.  I'm sure it won't be crowded at all.
Post nap Cranky picture

Mommy is crazy, I don't know what you're talking about, Happy Picture
Happy Picture, II

Friday, February 18, 2011


My sister sent me this link:

Three quick thoughts -

First is the mom's comment, "He's got so much love around him. We're an extremely happy family. His story is not tragic." 

How familiar are those lines?  Different set of issues, same feelings.  Defiance might not be the right word, not pride... maybe I just hear a tinge of my own frustration in what she said, in trying to explain something that should be very simple but inexplicably isn't.

Second is the very next line in the story:  But to an outsider, the Brittons' story might seem heartbreaking.  On second thought, I don't think that requires any comment.  But I guess I'm not really an outsider.

Last?  How much fun does that sensory room sound like?

Thursday, February 17, 2011

Signs of Aging

When your mother in law leaves both People and Good Housekeeping at your house, and you find you recognize almost no one in the former, but you end up reading the article on wrinkle creams in the latter.

Because complete sentences and coherent paragraphs are Hard

The Good:
---My various in laws:  for taking care of my son last week and my girl on Wednesday AND FOR CLEANING MY HOUSE. 
  But also awesome.
  (just for the record YOUR SON is supposed to clean the bathroom)
---My girl:  who's healthy & who was nice to her grandparents.
---Free lunches:  literally, from random vendors. With enough leftovers for the kids' dinner
   (is that lazy? gross? or super-duper practical?)
---My boy:  who said, "Well, if you don't understand something, you just have to think about it harder."  (Nevermind that he was talking about a video game). 
---Matt's boss:  who gave him a gift card for the movies just 'cause we've had all the Drama lately.  How sad is it that my first thought was NOT date night, but rather Whoo-Hoo! When can you watch the kids?  I like to think I'm a generous person.  I donate blood.  I shared my leftovers.  With my hungry children.  But movies are sacred.  Do.Not.Eat.My.Precious.Precious.Popcorn.
---My family:  who, when I gave a shout out for more emails, inundated me with Crazy and kept me happy, even if I couldn't keep up with the chatter.  I think we're responsible for half the NSA's time.

The Bad:
The news:  Not just The News, but the little things I keep hearing.  The guy from the cleaning crew just lost his wife.  Heard he lost 2 kids in a fire a couple years ago and one of his two living kids has xxxxxx "a diagnosis which probably requires an IEP".  He hadn't struck me as old enough to have kids, much less 4.  Heartbreaking. 

~~~~Edited to add:  It was pointed out to me that "a diagnosis" doesn't reach the same level of tragedy as losing your spouse and two children which... yikes.  Yes, OF COURSE not the same thing.  NOT AT ALL.  I get bristly myself when anyone suggests my own girl's diagnosis is any way sad or unfortunate.  But I also know that sometimes IEP meetings and the things that require them can be, um, challenging.  Complicating?  Just One More Thing.  I was thinking that this guy probably had enough to deal with.  But that implies that he has to "deal with" his kid which isn't what I meant either so I'm just going to stop typing.  Now.

The Ugly:
The duvet cover:  With 3 dogs.  When you allow pity to creep in after you get home late and so let them all upstairs on the day it shoots from 10 degrees to 70 (weather whiplash!) melting the snow and turning the backyard into a swamp which you forget about till it is TOO LATE.

Tuesday, February 15, 2011

Because you haven't had enough schmaltz lately

In belated honor of Valentine's Day, and because I promised to tell this story, and because I cleared off my nightstand to make room for my scanner....

It was a dark & stormy night...

No, just kidding.

It might have been a dark & stormy moment in my head, the day we got married.  I remember not being overly into the various details leading up to the day, but I was very excited about the flowers. And the room. And the champagne chocolates in the specially ordered boxes...  OK, maybe I was into it a leeetttle bit.

But I consider myself a simple girl (Oops!  Hold on - Matt's choking on something)  ...and I did not want a glittery bedazzled fairy dress.  I wanted something simple and after multiple stores told me how much they were going to charge to remove the bedazzling, I thought it'd be easier to have something made.  My stepmom actually found her - a nice older Hispanic lady who'd been in business for a gazillion years.  [No, I don't hold this against you, MAB]. We interviewed her, checked out her other wares, pulled on stitches - perfect! 

Except about halfway thru the dressmaking process she retired. And left her store to her daughter. Who, shall we say, was not vetted. I'd call asking if maybe I shouldn't be due for another fitting, or something?  Yes?  And they'd say Sure! Come on in!  Except there'd be no new stitches sewn.  As we got closer to the big day I became more worried, and made increasingly frantic phone calls to them, as I'd blown my budget on the flowers and what the heck was I going to WEAR? 

My memory might be a bit fuzzy here, but we started the process at least 9 months, if not a full year early.  She did not have the dress ready till TWO DAYS before the wedding. When I picked it up it wasn't ironed (what? are they suppose to do that?) so I didn't notice The Wrinkle.  I got it pressed, tried it on the Night Before and there it was.  No one else (admitted they) saw it, but the damn thing did not FIT.  There was a big-ass WRINKLE on my boob.

[Also?  The sleeves kept falling down, the edges weren't finished at all (because all my guests would be checking out the underside of my skirt?  What kind of wedding was this?!), there were some HUGE unnecessarily-plumping roses on my butt, and mid-way thru the party I had to safety-pin a piece of boning that was literally making me bleed.] 

Keep in mind I picked up the ironed dress something like 19 hours before the wedding.  Everyone makes fun of Bridezilla*.  I'd been SO careful - do we invite everyone to have fun with us?  What if they think we're gift-trolling? What if they're offended we don't invite them?  I had tried so hard not be That Girl, only to turn into a raving lunatic with less than a day to go. 

*I also confess the bridesmaid dresses were UGLY AS SIN but I've since apologized to the victims and my sister has agreed not to escalate the crime by seeking revenge (I get to wear a LBD to her wedding). 

But on the Eve Of, frantic calls were made. My stepmom bribed someone to open their shop to exam The Wrinkle but she sadly shook her head.  The entire bodice would have to be resewn.   She could not do in the next two hours. Crying did not change her mind. As I was getting the hairs done, I developed a plan to simply stop by Nordy's to buy a white suit. 

The only reason I didn't is because someone took away my car keys. 

I ended up wearing the damn thing only because there were no other options.  But it generated lots of Very Awkward photos with my veil casually draped over the Offending Bodice Wrinkle.  When my sister was out last month I hauled it up out of the basement, just for giggles, thinking it all might've been in my imagination. Nope. [Though in a little hurrah for me- it still fit, 3 kids later and ___ years later!]

BTW, these kids?

Are now these kids (far right/far left).
So no need to do any fancy math about the intervening years.

Anyhoodle...amidst all the Drama about the dress. [Which no one EVER admitted to understanding.  Blind!  All you people are Blind!!!], I let something slip my mind.

A little something.
A token.
A small symbol, if you will...
A sign of our commitment, love, and vows...

(is the tension building?)


I did not realize this till we were actually AT THE ALTER.  It was straight out of Four Weddings and a Funeral.  I started sobbing - with joy, no doubt, thought our guests.  Matt's jaw muscle was twitching. I was seriously concerned he'd just walk out. I mean, seriously, how would YOU feel? The deacon tried to get his ring off, but we were 20 years and 50 pounds too late.  Matt's brother misunderstood all the commotion and pulled out his Altoids to avert the apparent coffee breath crisis. My sister?  Useless. 

So we faked it. 

After the mass, while en route to the flowers reception, we swung by our apartment and I ran up 3 flights of stairs in The Wrinkle to retrieve the special box I'd conscientiously stashed away in a Safe Place several months earlier.  Matt forgave me and we all lived happily ever after.
The End. 

Happy Valentine's Day Babe! 
I'd marry you all over again.
The veil, artfully draped!
Me & my dad. 

Me 'n Matt.

Me & my sister.  You can't see it in this photo but she's about ready to slap me to stop The Crazy

Sunday, February 13, 2011


Welcome Home Little Girl!

Mommy and Daddy are so thrilled you are back home with us.  We missed Healthy Baby.  Though I suppose you aren't really a baby anymore.  I still call your almost-6 year old brother Baby Boy, which he laughs at, but I tell him that you'll both always be my babies and mommies get to say that. I look forward to threatening to use it in front of his friends in high school.

You were pretty sick there for a bit, Little Miss. Not really REALLY sick, which you have been before, but sick enough to stay with the Axis of Evil nice people in yellow quarantine gowns. Mommy got a little freaked out in the head, despite the "not really REALLY" part, because it reminded her of how sick you were when you were a baby and how if anything happened to you (or your brother) then the world would just stop turning, the sun would go dark, and all the flowers and trees would turn to dust.

Don't pull any stunts like that again, 'k? 

You and your brother bring us so much joy. When mommy was younger and cavorting around the world having grand adventures I thought that folks living in the suburbs with a couple o' kids must lead the dullest lives. I had no idea. Living with you, showing you new things, and watching as you find your own new things is magic.  There is absolutely no purer moment of bliss than when you give me a hug and pat me on the back. You are so much clearer now about what you want - you had the doctors cracking up because (in calmer moments) you would pick up my hand and move it HERE MOM and then you'd pat my hand. You will also stick your elbow in my face because, mysteriously, you like it when I kiss your elbow.  You are signing all the time now, independent of my suggestions.  I wish you had a few more fine motor skills because I have feeling you have novels inside your head, waiting only for the means to express them. The dogs make you laugh and you love feeding them while you eat and throwing dropping their toys for them. You'll soon throw them far, I'm sure.

You are also so funny. You love to play peek a boo, and tag.  You are just an inch away from full tilt running but right now, when you are chasing me with your chunky toddler speed walking, I can't help but stop so you can catch me and so I can scoop you up and kiss you. You love to share and will hand me your sippy cups and sticky bits of your meal to enjoy. I always take them and say thank you. It makes you smile. Then when I hand you sippy cup back you say thank you. It sounds like "dee-dee".  I wish you said Mama but I also find it hysterical that your second word is thank you. Gotta love a polite child.  Your first word was happy.

You are also a little hellion. You regularly move the step stools around so you can access the kitchen counters. Your various therapists think this is fabulous problem solving skill but, I'll admit, the novelty has worn off a bit because the counters aren't always clear of sharp knives and breakable bits. Yes, it's mommy's job to keep the sharp knives away from you but sometimes I'd much rather play tag or snuggle than load the dishwasher. We also don't give you plates yet because when you tire of your food you hurl the plates onto floor and break them.  Come to think of it, you should be able to throw the dogs' toys farther, given the velocity those plates achieve.  If you don't outgrow this quickly, we're going to have buy plastic plates, which mommy isn't a big fan of, and which will just allow you to give more of your food to the dogs faster.  You also love to explore, just like your brother. Your therapy people want you sit down and activate noise & light things, and do puzzles, but you're much happier emptying out the drawers and cabinets. Your curiosity inspires me, even if I grumble about the messes. You are also fascinated with water.  Which is why even your brother automatically shuts the bathroom door now.  Also why we have developed a bizarre system & schedule for the dogs' water bowls because if you have access, you will immediately dump the water all over yourself and the floor. You have an uncanny radar for water. Sometimes you try to drink from the dog bowls, if we forget to move them, which makes mommy laugh, but I haven't taken any pictures of this because I don't want anyone to ever make fun of you.  Ever. 

Your fascination with water has also given mommy a little tic inside her head. Your daddy and his family have some OCD tendencies. Nothing to worry about, their houses are just really clean and every now and then daddy will get a thing about bridges, or escalators. But not so bad that we have to take the long way home.  Mommy has previously mocked this ruthlessly not fully understood Daddy but now I am worried about any water you might be drawn to, and get stuck in. Please be careful.

We love you and your brother more than the earth and sky. Thank you for being with us. 

Editor's note:  The boy's off at a birthday party and the girl's napping.  Matt had to go to work.  We did spend one more night in the hospital but I was happy we did and since we probably blew our annual insurance deductible on night 2, there was no harm. I just poured myself a large glass of wine - nevermind the hour - and am off to snoggle my DVR.  I might not be around for a couple days because I have to put in 120 hours or something this coming week.  Or I might need a break. Will see how it goes. 

Saturday, February 12, 2011

Points for Trying.

Still hospitalized. No O2 most of yesterday but then the girl needed some at 3:30 or so this morning. Oh, and they put a monitor in our room full time so I've been watching it, um, a lot. Startled awake a few times last night to check on it. And it was at a funny angle so there was squinting and peering to see if it said 98 or 88 with the resulting High Alert - Now Fully Awake.

Yesterday the MD said she thought she heard crackling in both lungs and her initial chest films weren't totally clear after all (whaaa?!) but showed signs of RSV (which makes sense in retrospect since it's Respiratory syncytial virus) but there is apparently no bright clear line between a RSV and pneumonia, just a question of degrees. And with the lingering fever and woefully insufficient drinking, she said we might be due for chest films Deux today (with the thought that we might be headed to Pneu). But today she's better. She woke up HARD and unhappy today, and there's been lots of nose suctioning, but the O2 is back off. So today's MD (which would make #5) said that if she made it thru nap without desatting, we can go home.

The nurse this morning said it was too bad the night nurse didn't vacuum her nose instead of turning on the O2 in the wee hours because they won't usually let them out until they can make it through a night without O2. She asked if we were itching to get home. Well yes, of course, but get home with Healthy Babe. I am no fan of hospitals - I've read too many files at work of people picking up strange things in them (which we then may or may not be liable for. The old "but for" argument) - staph, sepsis, and, well, pneumonia. It makes me a total germophobe, contorting myself and dropping things to avoid door handles and elevator buttons. 'Course it's now easily argued I do need to be more cautious elsewhere since we now have officially Caught What's Going Around and landed our butts here, but that's a different discussion. I remember I had to petition the powers that be to break my girl out of the NICU, and in my Kafkaesque world actually had the insurance company lobbying the hospital for me (since, duh, pay for food pump rental or NICU bed? What was that? A three or four -digit- difference for them?).

Also, other than absurd amount of stuff in her nose, the general symptoms are of a cold. A bad cold, with occasional (mild) fever, but a cold nonetheless. And she's much perkier today. Also? I just had more chocolate milk. So I need to be cut off.

But I don't have an O2 monitor at home. Much less O2 tank, tubing, etc. The concern now is whether she can make it through the night without needing O2.... there IS NO WAY TO KNOW IF SHE DESATS AT HOME. I mean, intellectually, I know she's not that sick, not anymore, but what happens if her O2 drops? Does it stay down and then just keep dropping? The proverbial slippery slope? Does it stay too low till the morning, causing lord-knows-what-problems in the meantime? SIDS?!?! (at 2.5 yrs?) Nonononono...I'm perfectly happy here.

Though she FINALLY fell asleep for a nap (two hours after I told the doc I was putting her down - her schedule is wonky) and she's still at 93 92 93 91 93 94

What I was originally going to post till I started rambling about germs & being discharged:

Reservoir Snot Vats
I made a comment in the course of the above discussion about liking their nose vacuum. Nurse said we can just use a bulb syringe at home. Um, no.  They are pulling GALLONS of nastiness out of the poor girl's sinuses.  Her head simply isn't that big. Where is it coming from? 

Residual Signs (of) Virulence
The snot.  The 99 degree fever. The shocking (for her) lack of appetite. My girl likes to EAT. We actually talked to an EI nutritionist because she was becoming a little, um, disproportionate. This morning it took her an hour to eat the soft center from a single piece of toast.

Results of Spousal Vagueness
Matt, the dear, has been pulling triple duty.  Stopping by here, tending to the mutts, giving our son a quick hug at his Aunt's house, then going into work since one of us has to stay employed (also, I have vacation time to burn). But I need to be more specific in the future when asking him to bring me things. 
1st run:  one clean Tshirt, running shoes. No socks, no underwear.
2nd run: underwear, no new Tshirt (shirt #2 now being festooned with snot), but sweater he must have (hopefully?) found on the floor as it's covered in dog hair.

Relearning to use Soap, Vigorously
There's a shower in the room. Nice.  But have you ever smelled hospital towels?  I cannot even begin to imagine the de-lousing those things must endure.  But they don't even smell like bleach, they smell like flea dip. For cattle. I haven't totally abstained, but we're talking bare minimum hygiene.  Looking forward to my own bathroom. 

...or, Rapunzel, Style, Victory
Along with the shower issue, there's the hair! Oh the hair!  Ironically, I just got it cut a month or so ago.  My specific request was it be too short to put in a ponytail because I am L.A.Z.Y. And if I don't have to wash & dry daily I won't. I told myself the slicked back pony is sophisticated (mwhahahaha) but, um, no.  It just looks L.A.Z.Y.  So I look super-duper-fabulous right now.  The victory?  Is my daughter's because I've been letting her play with it endlessly, because it calms her down. 

Relatives Staring Vacantly
...but it's not like anyone here cares about my hair.  The other parents look as zombified and miserable as I am.  Pediatrics floor.  Rumor has it mostly full with RSV-ers (new word!).  So I'm sure their shirts are full of snot too.  We're careful not to look at each other too closely.  [Also, there are some KIDS on this floor. Not the patients, the parents.  Dang, they start early in the midwest!]

RNs, Smashing Vixens
OK, not ALL of them. And really more the techs than the nurses.  And some are trying more than succeeding. Why are you wearing that much make up around sick people? But some? Hawt. Simple empirical hetero observation. I remember being in labor with my boy - sweaty, stinky, and big as a whale when new nurse came in - she was like a movie star. Petite with long curls down to her (teensy tiny) waist.  Which btw? Not sterile, all that loose hair. Luckily she was at end of shift or there might have been A Scene.

Edited to add:  Also, apparently, doctor #5.  Note to spouse:  When your wife is on day #3 of hospital duty, and avoiding the cattle dip towels, DO NOT dramatically sigh as Doc#5 leaves our room.  You might hurt yourself. 

Resume Sampling Vineyards
My immediate plan upon discharge?  LARGE glass of red wine. STAT!

Reliving Sad, Virtually
Daytime TV sucks.  Also, small room and I don't want to keep her up. So I've been reading the blogs (what else?), mostly Tricia, circa 2007, when her girl also had RSV and then immediately (well, immediately in a bloggy way) heart surgery, then her doggie died.  Not that any of these things are profoundly rare (I'm not minimizing, just not claiming kinship) but the timing was eerie. Also, anytime I read about dogs passing, I think about my Max.  Max's story is inexorably part of Brennan's, and how losing Brennan made my girl's extra chromosome so much less importance because... this will sound flippant - it's not... simply because she is ALIVE.  Except it does matter a little, because we're quarantined here because of the extra, probably. I'll have to tell Max's story soon. Matt wanted me to write it down when he died but I couldn't. I suppose it's silly (he's just a dog!) but Sam Simon (of the Simpson's, and later dog rescuer extraordinaire) said something like there's sometimes one dog that takes up residence in your heart and it's irrevocable.  That's not a quote.  It wasn't in the CBS interview summary & the video isn't on line.  Too bad. It was a good line, even though I have on the vaguest memory of it. Just think Lassie. 

Also, because of Brennan, and the heart surgery, and the NICU, hospitals are such swirling emotional cauldrons (can I re-use 'vats'?).  I suppose they are for everyone. Most people both arrive and leave this world in them.  (flipping to flippant...)  Because of this, I think they need nicer towels.

Friday, February 11, 2011

Random Stories (from) Viral central

  • I do not think of my daughter as medically fragile.  Still, rattling off her health history does take a solid minute.
  • Neither one of my kids have had a snuggly or teddy, despite my best efforts (we have HUGE collection of rejected contenders).  No paci's either. [Though at the ripe old age of 5, my son is now into his Pillow Pets, and then there was Classy Bear - though I think those are more social things than comfort items.]  Nonetheless, my girl has spent the last two days clutching her hospital-issued sippy cup like a ...well, like a cherished teddy. She isn't using it enough, though we've staved off the IV so far, but she cries if we reach for it. I'm thinking I'll glue some yarn up top, draw a face, and call it Dolly.
  • She also cries now at the SIGHT of our fine medical peeps. She knows they are up to NO GOOD.  Learning delays?  Hogwash. She identified them as the fourth spoke on the Axis of Evil almost immediately. She's in the dangerous grey zone between well child visits where she ends up hugging her regular ped (it's a long hair thing), or a cardio check up where it's long & we need distractions but is not particularly intrusive, and being too sick and weak to fight back. 
  • So fight back she does.  Other than her breathing, I brought her in because she was SO lethargic, wouldn't-sit-up soggy-wet-noodle lethargic.  By the the time the ER agreed she needed O2, she became demon spawn.  Super-powered demon spawn.  She ripped TWO nose cannulas off (including the adhesive patches on her cheeks - Man that must've hurt), and became simply WILD if the cutesy dinosaur mask came within a foot of her.  The nurse was on break so the ER doc stuck the O2 tube in the end of a styrofoam cup and told me to aim it at her face.  Which I tried to do but my daughter, the math whiz, knew exactly how far away a foot was and freaked out if it breached the line. 
  • On the one hand I really appreciate the problem solving skills.  On the other hand is my girl  really the first kid to have a fit about this?  The styrofoam cup is the first alternative? 
  • The ER doc was great - she sat down and we chatted about pneumonia in kids with DS, pneumonia vs RSV, blah, blah...   But when the initially friendly ER nurse came back from break and was helping us pack up for the big move upstairs, having missed my demon spawn's antics, she snapped at me about not trying hard enough and how my daughter was going to end up in an oxygen tent.  It was not said gently.  It was said in that voice I assumed they reserve for crack-whore-moms (sorry gigi) who try to see their kids after social services has removed them because crack-whore-mom gave the kids too much Jack D at naptime.  At the time I was laying down on the gurney next to the girl holding the styrafoam cup 13" away, ready to be wheeled down the hall. Not prime fighting stance. I said something like what do you think I've been doing?  I did not go toxic on her, which is what I've been longing for another chance to do ever since. Matt is relieved I didn't.  I am terribly disappointed in myself.  The customer satisfaction survey I will be sure to fill out just doesn't have the same punch.
  • Upstairs, after experimenting with the cannula and the girl's foot wide defensive perimeter they simply strapped her arms into those restraints which was sad, but effective. (Oh! That's what they do!  The ER and peds floor need to talk more)  They also said, when I asked, because it did seem easier, that they don't use oxygen tents anymore because apparently there was an incident in Canada.  Which I have zero intent of googling. Which shows how much the snotty ER nurse knows.
  • Before we resorted to arm restraints, there was a very Very VERY traumatic incident involving me, sitting with my child in a bear hug, while they tried to simply force the mask onto her face.  Under the theory of "They eventually give up".  She thought we were trying to smother her.  No, I mean really.  She was in a full fledged panic.  - I - felt like we were trying to smother her.  I was crying, my girl was sobbing.  It was not our finest hour.
  • The arm restraints came off the next morning.  She has more or less conceded the cannula.
  • Before we realized the face mask was not an option, there was a discussion amongst the ER staff about whether my daughter was a mouth breather. It was done in rather clinical terms. Point being if she isn't breathing through her nose (especially if, say, it's full of snot because she has RSV), then the nose cannula simply won't be effective.  IT.SET.MY.TEETH.ON.EDGE. Surely there is a long latin or greek term they can whip out instead of "mouth breather"? 
  • Overheard:  some other nurse talking about a "Down's kid" in the PICU.  Ironically, this did NOT bother me. I find the linguistics & semantics of this all fascinating. Yes, people first language... but other's have pointed out that people say "autistic kid" or "deaf kid" or "tall kid" and it's just an adjective. I suppose, as with most things, it's a question of tone, context, and intent.
  • Food:  I wish I were one of those people that dropped pounds under stress. Um, no.  Dudes, they have an ICEE machine TWENTY feet from me!  Also, a fridge stocked with chocolate pudding, chocolate milk, and popsicles. On the list of (food) things I'm grateful to the Universe for, right after wine and coffee, chocolate milk and popcorn are tied for third. Icees are #5.
  • The Peds Floor:  My son has never been hospitalized.  My daughter spent a month-ish in the NICU and then a week in the PICU after her heart surgery.  Her eye surgery was out patient so they just handed her back over.  Interestingly enough, you don't get quite as much attention on the regular floor.  Not complaining because we don't really need it but nonetheless a little disorienting- they come in, check her oxygen levels, suction her nose (more trauma), listen to her heart/lungs (even more trauma - my girl has developed a paticular loathing for stethoscopes. Wierd. I would've picked the nose vacuum)...and then they leave us alone to nap (why do you think this post is so long?) and raid the fridge.  There is no monitor bank, no alarms, no roommates (the up side of contagions!). 
  • In the ER I kept hitting the O2 alarm's silencers. Someone gave me a look & I said I was a nicu mom.  Oh - ok!  Like I've put in the time & now have the right to silence an alarm on a monitor that 6 people are staring at anyway? 
  • Final thought on the b**** in the ER.  As noted, while not medically fragile, my girl & I have spent a few hours here & there hanging with the RNs, MDs, CNAs, PAs, etc. While in more emotionally fragile states. I've had a couple of bizarre conversations, some I'd want to grab a beer with, some not, but I've always aimed for 'professionally friendly'.  Not pretending to be besties, but calm, you-can-give-it-to-me-straight-doc, and able to convince the NICU that I can handle a newborn with a feeding tube. I have never had any "Incidents".  For that person to suggest I wasn't trying hard enough is infuriating

Thursday, February 10, 2011

Too Tired for Clever Title using the letters RSV. Suggestions welcome.

Just as I was busy sulking about the second chunk of money we're putting in Matt's car, the universe gave me a big ol' knock upside the head.  Excuse me for being crude (don't read this Gigi) - but I do believe the term is bitch-slapped. 

Also because less than a month ago I wrote my daughter hardly ever gets sick.  Hell, I was practically DARING the universe to unleash its fury. I mean I should really know by now not to tempt the powers that be. What did I think would happen? 

My girl was admitted to the hospital last night with RSV.

She was fine on Monday, sick with what seemed to be a cold on Tuesday and then still sick on Wednesday.  I was up with her on & off Tuesday night, more to comfort her than anything else. Mild fever, mild snottiness, occasional coughing.  Not a big deal.  We talked about calling the Ped but what would they do for a cold? I am NOT a big fan of antibiotics at every turn but then my kids have almost (***  That's me, looking for wood to knock on) never needed them so there I go, sanctimoniously judging. 

Except when I got home on Wednesday I was on the computer, she was dozing next to me and I thought she was breathing too fast and doing this strange thing where she'd hold it for a second before exhaling.  Also Matt had given her Tylenol at 12 and at 2 her temp was still 101.5.  So I called and they got us in at the end of the day.

I had a lovely conversation with myself driving in.  It went something like:

Because of my college roommate's niece, who I mentioned before but am too tired to go find the link for, died of pneumonia.  Also, Matt reminded me his new co-worker's brother in law. Same. 

Matt has a theory that if you put something out there into space it'll happen, bad or good. He has a bit of a mystical streak.  Sometimes it annoys the crap out of me.  Because then I started thinking Don't Think About Pneumonia. Don't Think About Pneumonia. ...You get the idea.

Our regular MD wasn't available so we saw the same guy who, when my boy was a newborn and I was struggling to nurse him, told me I was starving his brain of nutrients.  Same doctor who, a year or two later and we were feeding the same boy goldfish to keep him from ripping the wallpaper and sharps container off the walls, came in and started lecturing us about the transfats and salt in goldfish.  But this time?  Very cute with my girl.  A few aren't-you-adorables and all was forgiven. Gawd I'm easy. 

Anyway, he ruled out the ears, then thought he heard a crackle in the lungs, then she failed the Pulse Ox.  FAILED.  Two machines, one too-cold toe, three fingers - 86, 88, 88.  Anyone who hasn't had the joy of monitoring blood oxygen machines should note that 98 is good.  88 is NOT.  Even before her heart surgery, she was always in the high 90s (her poor little sieve just had to work really really hard to keep it there). 

So, yeah... pneumonia.  Nice work mom. 

He sent us off to the ER, said he'd call ahead.  He commented that normally with blood oxygen in the 80s he's supposed to call an ambulance and he might get some grief but she was stable and didn't think we'd need the drama. Well no, we didn't. I completely agreed with him and laughed a little but still... odd?

ER got us in immediately, but chest Xray was negative and RSV test positive so NOT PNEUMONIA.  Suddenly, despite the ER's full attention, the girl's O2 levels, the nearly missed ambulance ride, there was profound relief.  RSV is the bane of the NICU but not as a big deal in older kids, right?

Except not really a non-issue in older kids with DS or, say, repaired hearts.  Hence the 86-88 oxygen levels.  So they admitted her.

But she's not even on an IV, just oxygen.  She'll be fine. She perked up tonight after vanilla pudding dinner and is drinking enough (but barely) to stay hydrated so we're only getting lite supportive care. No emergencies.  Nothing to see here folks, keep moving. 

Just hand me the defibrillator paddles first, will you?  Mommy's heart nearly stopped there for a moment. 

Monday, February 7, 2011

Winter Blues

[We seem to be stuck on a couple themes here lately - This would be SAD II]

I have been fighting an incredibly foul mood lately which settled this morning into a serious case of ...really, really not happy. I dunno if they're causes or just something to sulk about, but Matt's car is back in the shop with something adjacent too but possibly naturally not covered by the new transmission warranty, I just told my family that I can't go on their annual exotic vacation AGAIN (that would be six years in a row now.  If I muttered something about damn pregnancies & the damn kids you'd know I was joking, right?), and...hell, I don't know, isn't that enough?  Oh! And it's still cold.

So instead of boring everyone, including myself, with the usual affirmations, these-are-first-world-problems, look-at-everything-that's-going-well, at-least-you-have-your-health, this is what I came home to today:

Lemons, from Gigi, off my tree that I left in her capable hands, even though we callously left her & SoCal behind for the glories of the snow & ice here in flyover country.  We miss you Gigi!

My girl, who likes broccoli.

My boy's spur of the moment Mommy's Home! valentine.

This guy.  Who might possibly, hopefully, bust me out of town for a day, even if it is a business trip but which will nonetheless substitute for a mini-vacation.  Room Service!

These guys, patiently waiting for my girl's leftovers.

Or, not so patiently... Caught!

Happy Monday To Me!

Saturday, February 5, 2011

Advocacy, II

Yesterday at work I submitted a "proposal" for Genes Day.  Since even my husband did an unconvincing "uh-huuhhhh, that's great!" when I told him*, March 21st was designated not too long ago as World Down Syndrome Day.  A nod to the third 21st chromosome on 3/21.  It has grown into a fundraising day - $5 to wear jeans, for those with extra genes. 

"Do you know what I'm talking about?"
"Not a clue" 
Love that we've been married long enough to immediately call shenanigans

I think I've mentioned before there's not a lot of warm 'n fuzzy at the office.  Which is perfectly fine with me - I keep to myself and try (not always successfully) to get my work done. Almost no one asks about either one of my kids and when they do I'll pull out a cheerful "They're great! So cute!" and move on.  I'm not implying it's unfriendly, everyone is just busy and not that many people have kids - cookie jar antics make them glaze over.

So it was with a weird mix of giddiness (Lookit Me! Advocate Mom!) and embarrassment (NOT about my child, jeez, but in breaching the professional veil.  I'm bringing the home into the office. Ohmygoodness, I have a family! And *gasp* Emotions!).  I mean, yes, I pull some odd flextime hours, and take snow days when school's cancelled, and I have a gazillion photos at my desk, but this seemed different.  Demanding people to, literally, LOOK-AT-ME!

[And, also, risking the commentary.  Lord, I do loathe the gossip.  Small price?  Dunno.]

The forum is also nothing but awkward - This was all triggered by the Diversity Team's new suggestion box envelope in the lunch room.  Formal company, casual platform, serious topic.  I wouldn't recognize a grant proposal if I sat on one - what to do? I cobbled together a letter hovering between light, so as not to scare 'em off (my girl likes dogs!  She doesn't like peaches!), educational (pulled some stats off various websites), threw in a little pathos, so they couldn't ignore (heart surgery! future bullying!)... and in either a brilliant marketing move, or cheap sensitization, left a wide right margin in which I added some of my best shots of Little Miss.  Because she's stinking adorable.  How could they turn down this little girl? 
Will just have to wait and see what they do.  Ack! 

Also, in scrolling through this site, looking for said adorable pix, I realized I have completely hijacked my kids' stage.  The Photos For Gigi plan?  Abandoned.  And the few photos that have been posted trend high towards PJs.  Many apologies to my core audience.  So, to rectify, here is my girl.  Hair combed and dressed.  It's a miracle!   
Mixing up a treat for the dogs?

Oh! For you? Enjoy!

Action. Nothing but constant motion.
Downward dog?

Suddenly looking very grown up.

Thursday, February 3, 2011


The weather was...not.  Two snow days, two stircrazy kids, three stircrazy dogs - I did diligently work from home...Yawn. Non event. Sorry for the ramp up. 

Now back to the meaty stuff:

There was a discussion over here last week & again on Monday about how we characterize our kids with special needs.  I remember reading various discussion boards after learning about my girl's heart & genes and being, well, unimpressed.  They were all so sure of themselves.  "Wouldn't change a thing!  God's Blessing! Specials Parents for Special Kids! Yeah for us!"  Lots of exclamation points.  I'm not sure I'll end up in a coherent static place, but this was the comment I left.  By way of context, they were also talking about "different, not worse" (in terms of autism and the deaf culture), though I think DS's slogan is "More Alike Than Different". 

...The crowds on the message boards that wouldn't change a thing about their child and that DAMN Holland poem on one end of the spectrum and the simple facts that my girl (who has down syn) does have cognitive delays, did require open heart surgery, and will always be immediately recognizable as a member of her club on the other end. The lure of "different not worse"* is tempting. I desperately want her to be accepted and loved for who she is. And who she is is literally programed at the cellular level. Absent that extra chromosome she would be a different person - it's that simple. But absent that extra chromosome she would not have had two surgeries (w/the 3rd scheduled), she would not be at higher risk for leukemia & early onset alzheimers, and we would not be talking IEPs.... How do you love someone so unreservedly and yet object to their cellular makeup?

*I actually wrote "different, not better".  I find this wildly amusing. 

I think Robert Rummel-Hudson does a fabulous beautiful job sorting thru what it means to love our kids and dealing with their issues, whatever they may be. Certainly more eloquently than my infantile stumbling efforts here.  Because, though I struggle with the concept, my gut check response is usually to end up shrugging and moving forward with my day. Usually, but not always. Stoicism doesn't necessarily make for exciting reading (Dick Francis references aside).

Tuesday, February 1, 2011

Winter Storm, Episode MCDXXXII

[edited to add:  An entry for my west coast peeps.  Anyone on the east coast, who has already posted pix from the last storm of snow up to their eaves, has permission to skip and/or roll their eyes at the unnecessary drama & repetitiveness]

Even though I've studiously avoided the news lately, it was hard to escape the WEATHER!  OMG, THE WEATHER!!  There were people huddled in small groups whispering all day yesterday at work, especially after the Nat'l Weather Service warned of a "crippling winter storm event".  I spent a long time in SoCal, whose fine weather-people had the hysterical habit of announcing an inch of (admittedly rare) rain as Storm Watch 2000!  And while I'll admit the midwest weather is more extreme, I haven't always been convinced it merits the sixteen exclamation points and ominous music. 

 But they promised ice this week, and 1-2' of snow, and maybe even whiteout conditions.  They also said there'd be strong winds -after- the ice freezes on all the trees no one bothered to trim back from the power lines, all but guaranteeing we're going to be sitting around our fire tomorrow night, huddled under blankets, wishing we'd remembered the marshmallows and graham crackers.  And maybe a generator.  

I trust some paper pusher somewhere has done the math and compared the cost of burying all the power lines around here to the cost of all the tree trimming (well, no cost there since it apparently doesn't happen enough), and the emergency crews, and lost revenue as people sit around huddled under blankets wishing for s'mores and for the ability to run up their heating bill?  I'm guessing that the preventing-huddling-under-blanket side of the equation lost. 

Anyway, despite Workathon 2011, after increasingly dire phone calls from Matt yesterday I packed up a box of files and bailed out early.  And despite mocking the weathermenpeople, I really really do not like driving on ice, nor do I want to be anywhere near any other members of the unwashed masses while they are driving on ice.  Two kids, no wish to leave my children motherless, can't afford new car right now, blah, blah...

I have remote access so will diligently get my work done today from home
[Oh yeah?  How's that working out for you so far?  Mirthless laughter]

For the benefit of my CA brethren, I thought about live-blogging the storm.  I pictured something like:
7:04 snow.
7:42 snow.
8:12 snow.

See?  Scintillating reading!  But since it's supposed to be the oh-so-crippling snow PLUS ice it might look more like this:
8:37 sleet
9:03 sleet + fluffy white snowflakes
9:24 snow.

Not much better. 

I will say I let the dogs out this morning and the aforementioned sleet + big fluffy white snowflakes made for a fairyland.  The sleet hitting sounded like tall grasses in the wind.  It was magic

Magic with s'mores would better though.