And then came the sun

I ran another half marathon last weekend, this one benefiting our local Down syndrome group.  I've told anyone who asked that it was a terrible race - I hit a wall about mile 8, my legs felt like wood, and it was snowing.  Despite a much flatter course and bonafide training I finished a full half hour slower than last year.

But the first half of the race was beautiful.  The race wound thru some old neighborhoods with massive trees in full spring bloom.  The flowers clashed with the dark winter sky and the snow was falling soft and heavy.

It was magical.  But it suddenly occurred to me that the snow would kill off the blossoms.  Mutually exclusive acts of nature.  And my face crumpled into an ugly cry right there in the middle of the street as I thought this magical thing that I had wrought might be taken early by the very same, mutually occurring thing that makes her beautiful.

It is quite likely I was simply hypothermic and hypoglycemic.  But the memory of the snow on the flowering trees has stayed with me...  as has the fact that the snow was melting by the time I got home.  The flowers survived.  Comfort can be found in the strangest corners.

Of Time and Place

Just before school let out, I learned The Girl's favorite para had a brother with Down syndrome.  He wasn't allowed to go to school, suggesting he was born in the 1960s, when babies with Ds were still routinely institutionalized.  I wonder about his parents, who defied all social convention when they took him home.  I wonder how bittersweet it must have been for them when IDEA was enacted in 1975, 15(?) years too late.

I wonder if they feel a little twinge knowing their daughter spends her days enabling something their son never had.

1975 is the same year Gore-tex started their medical division.  I don't know when the survival rate for pediatric open heart surgery shifted from abysmal to only slightly terrifying, but 33 years later a tiny piece of rain jacket fixed the giant gaping hole in my daughter's heart.  Had she been born the same year I was, she would have died.

In 1982, relying on medical advice, an appellate court in Indiana allowed six day old Baby Doe to die.  Baby Doe had Down syndrome - a fact his parents found so abhorrent, rather than allow someone else to adopt him & fix a fairly routine medical issue, they withheld food and water till stomach acid ate his lungs.

I wonder about the parents who would have chewed off their own arm for corrective surgery but didn't have caring doctors or the right technology.  I imagine it would sting a little, seeing my girl running across the playground with only a faint scar on her chest to document fortune's grace, knowing their own child was just one decade or late night lab discovery shy of a full life.     

I attended the NDSC convention in June and marveled at the self congratulatory nature of it all.   There is still much work to be done - 5 minutes of Q&A about school inclusion is painful confirmation of this, & my pedicure lady at the hotel reminded me that children w/Ds in Serbia are still hidden away and shameful.  But in this country, today, we have dedicated professionals, best practices, and the full weight and force of federal law.  We have the ABLE act.  We have the internet and each other.  

And we have medical research.  

It's not uncommon to hear parents fervently swear they wouldn't change a thing about their child.  "She wouldn't be who she is without Down syndrome!"  I wonder how much of this is a reflexive reaction to  the trolls and naysayers - we become such fearsome advocates for our children we fear anything other than rainbow spewing giddiness will validate the eugenicists or scare a frightened expectant girl into a clinic.

I think this is the secular version of "special angels sent by God."  My child has a third copy of the 21st chromosome and we do not need to ascribe her otherworldly missions or insight to honor her place in this world.  That extra "love chromosome" (gag) dicked with her heart and landed her in the  PICU when she was 3 months old.  That extra coding dicks around with the chemicals and proteins in her brain and makes her neurons fire inefficiently.  This makes it hard for her to learn things and exceptionally difficult for her to express herself.  Assuming her soul would be any less fantastic if the chemical soup in her head processed language faster is tantamount to claiming she's awesome because she is slow.  It is as reductive and damaging as finding an amputee inspiring simply because they get out of bed in the morning.  My daughter is a fucking delight - not because she has Down syndrome, but because she is.  And it kills me that she cannot tell me her stories.

At the NDSC conference, as I heard about research into drugs that may quiet overactive proteins or activate sleepy neural pathways, I wondered about the doors we will never open. None of the research sounds remotely close to actual application and, just as I started to daydream about experimenting on my 7 year old, one of the researchers mentioned thalidomide.  Woe betide those that fuck with the delicate balance of the human body.

But I wonder if twenty or forty years from now Down syndrome will be medically treated, just like  diabetes or hypothyroidism.  I wonder if I will feel a little twinge in my sunset years, seeing stories about miracles of modern medicine, valedictorians with a little extra, or ivy leaguers.  I wonder if I will regret my caution, just as the little pills prove safe… just as I start watching for signs of Alzheimer's in my baby.  I wonder.

Dear Doc

Dear Doc -

Once upon a time there was a beautiful little girl.  She was very special but, as in all fairy tales, she was given certain challenges.  As soon as she was born she was whisked off to the first doctor, but he reached deep inside her heart and made it strong.  His magic would allow the girl to live a long life and run fast. The girl's parents were well pleased.

Her parents then took her to the eye doctor so she could see all the flowers and story books.  They took her to an ear doctor so she could hear her family laugh and the dogs bark.  There were other people for her feet and still others for her neck - courtiers abounded.

But some of these doctors gave her shots and stuck needles in her arms.  Sometimes she would visit a doctor, fall asleep, and wake up feeling sick in a different place.  That was scary.  One time the little girl was very, very ill and stayed in a hospital where they had the temerity to vacuum her nose like a peasant.  Once they actually held her trying to get pictures!  Audacious paparazzi!

The girl did not care for these gross invasions of personal space.  Their paltry compensation - stickers! ice cream! - was beneath her and she scorned it all.  (Well, maybe not the ice cream but it was wildly insufficient.)

The girl began to believe her parents had abdicated their duties.  She ignored their entreaties and became an expert at spotting and eluding anyone with medical training.  If cornered, she would roar like a dragon and fight back.  Hard.

Though she was impressively fierce, this made her parents sad.  They loved her very much and wanted her to have all the flowers and laughter.  They believed these alchemists could help, but they wanted her to be happy too.  Confusion and darkness spread across the land.  

But then the girl met you, Doc.  She watched you coax reluctant patients into treatment.  She saw you check their ears, check their eyes, and find out what was going on.  She saw how much you cared and how hard you worked to help.  She watched you reset limbs, excise debris, and patch tears.  She saw how happy your patients were by the end of each episode.

Because of you, the girl decided to give the doctors another chance.  Perhaps not aallll of them were evil trolls, after all?  She started bringing you with her to appointments for a second opinion.  

Like a food taster of old, you would gallantly test the equipment on her behalf.  

You submitted to exams to evaluate the physician's technique.  Charlatans who failed to respect or recognize their peer were quickly dispatched. 

Because of you, the girl was properly treated, with deference and every courtesy.  Because of you, the girl's parents were assured she was given every advantage.  Peace was restored and both the girl and the parents were pleased.  

Thank you, Doc McStuffins.  

Thank you.  

This is how you do it.

I've told this story a couple times, on FB and in other people's comment sections, but to kick off 31 for 21 and Down syndrome Acceptance Month, I'll share here. 

I was seven months pregnant and a frequent flyer at the high risk perinatal center when they found something amiss.  I was immediately shuffled upstairs to talk to the pediatric cardiologist.  You have got to love to the efficiency - no appointment, no wait, just take this elevator, turn right, walk 50 feet.  Apparently pending open heart surgery merits special treatment.  

And/or they wanted to shove the hugely pregnant, snotty weeping mess into someone else's office.  

And/or they were trying to atone for the fact they missed the GIANT hole in my child's heart during the first three ultrasounds.  

But I digress.  

The cardiologist explained what an atrioventricular septal defect was and sketched out a picture for me.   He told me how they'd fix it.  I'd backed out of my scheduled amnio and my blood tests were clear so we still didn't know, but he explained this particular type of heart defect had an incredibly high correlation with Down syndrome.  "Don't worry.  Even if she does have it, they've completely revamped the way they teach these kids and she'll be more productive than half of society."  

He was relaxed and upbeat.  No tragedy here, folks, move along.  They were going to fix her heart and teach her well and everything was going to be ok.  [I don't think "productivity" should be the go-to standard now, but it was comforting at the time & I seized on it.]

At the next appointment with my regular OB, the nurse said they'd only had "this happen" once before…  and she grabbed one of those happy family Christmas cards that line all OBs' halls, testament to the fruits of their, um, labor (couldn't resist!).

It was shot of a brother and sister, snuggling.  The little boy had Ds.  

"Aren't they beautiful?"

There are some ghastly diagnosis stories out there - doctors presuming and even advocating for termination, or coldly pointing out all the phenotypes of Ds on a newborn to parents, as if they were mid-autopsy or just found something in a petri dish.  Most Ds organizations try to include doctor training in their mission but it's an uphill battle.  

I was spared most the grieving and dismay many parents experience with the Ds diagnosis.  We'd lost our first baby and contemplating losing another in heart surgery was so gut wrenching, perspective wasn't so much gifted us as forced down our throats.  But I haven't given enough credit to those first conversations ~ they were beautiful.  

Grab This Button

Membership Has Its Privileges

Yesterday I took The Girl 45 minutes into town to get her glasses repaired.  I was annoyed about 5 different things - not the least of which was that we bought her glasses, and the accompanying warranty, 45 minutes away.  The eye center is attached to the hospital… and right around a couple corners from the perinatal center, where we first discovered the extra bit of magic that was to enter our lives.  The Girl likes to run the empty halls on the weekend and invariably tries out this door.  I often think we should come back during the week and hang out.

Because, you know, advocacy.

Or maybe because I have a twisted sense of humor.

As we were leaving, a woman smiled at us and asked how old she was.  And while dealing with the gen pop is not one of my strong suits (talking! strangers!), something in her voice made me smile and slow.  

"She's six."

"My son is… my son was…"

She faltered. 

Her son was 50 but had passed.  She said he was a gift and touched everyone who met him.  

Which was why I was hugging this unnamed woman three seconds after we met, and crying, and kissing my girl, who was alarmed and urgently signing "home."  The long drive and missed appointments and everything else gnawing at me was forgotten.  

We joke about being members of this club, and there are hard things that come with it, but not much else will move me to hug complete strangers.  

Magic.  

All clear

Last week I went in for a mammogram.  On Mother’s Day Matt handed me a letter asking me to come back for more tests.  My comment at the time ran along the lines of, “Are you fucking kidding me?  I don’t fucking have time for this fucking shit.”   

Hey, no one promised you great prose or deep thoughts here.    

The dark voice in my head decided that because the universe is stalking us and since my girl’s bloodwork came back clear, it must have set its sights on me instead and I was going to end up bald, tragically waste away, and orphan my children.

I also instantly decided that I wasn’t all that attached to my boobs.  They had failed to land me any Playboy gigs and, despite many tears and herbs and lactation consults, failed to fulfill their primary duty of feeding my babies.  Double mastectomy?  No problem.  Cut ‘em off. 

What I was really freaked out about was the ultrasound.  Which is about the most innocuous, peaceful test you can get – dark room, nice pillow, warm gel, little wand… it’s almost like getting a massage.  Except at one perfectly routine ultrasound I found out my son had died.  And at another found out my girl’s heart could let her die too. 

Apart from a brief expletive on FB, I downplayed the call back.  My peeps on FB assured me it happened all the time and was perfectly routine.  They would have called if it were anything serious.  I am not a wee fragile flower and refuse to freak out over remote hypotheticals when there is real actual tragedy in the world.  (At least I won’t do it publicly.)  I joked with Matt about the life insurance payout and reminded him to get a pre-nup so the hot nanny doesn’t run off with the kids’ money.  But when alone in the shower and in the car, I’d choke up – not about the leaving my children or the hot nanny or dying, but about being in that fucking room again and getting more bad news.  A perfectly normal response, right?  No? 

I believe that is what they call an emotional trigger. 

I went back yesterday and was smooshed and squeezed in a highly intimate and unnatural manner and they pronounced me good to go. 

Right.  No big deal.  So unexciting, in fact, the additional films did the trick and I didn’t even get to the ultrasound.  *phew*

I went home, went running on my achy feet because I am alive goddammit and I can, had a glass of wine, and pondered the possibility that perhaps the universe is not stalking us after all and perhaps - just maybe - I might have some residual anxiety issues instead. 

Not my boobs.

Obviously.  

Smorgasbord on Aging, Stress, and Working.

- Since Easter I've pulled 4 all nighters for the corporate gods and I'm still hyper ventilating in the morning at the sheer volume of shit that needs to get done.

- These days, an "all nighter" means staying up till 2-3am.  I really should have powered through till dawn 'cause I could have used those extra 3-4 hours but…  then I'd have keeled over and not had to worry about anything ever again.  Come to think of it, that sounds rather relaxing.

- I thought I was supposed to need less sleep as I got older?  I call bullshit.

- I miss you guys.  And I know it's the devil, but I miss you guys on FB too.  I'll be back soon.

- I did take a little time off ~ On Friday I took The Girl to Children's for her annual labs.  Fun stuff.  We were about 4 months early because for the first time in her entire life she got a nosebleed.  And then a second.  And then she fell asleep on the stairs. And then her teacher sent home a note about how abnormally tired she was.  I didn't say anything because I knew I was being ridiculous but if there is anything that could break us right now it would be leukemia.  Fiscally, emotionally…  I know people find a way, but bankrupt, unemployed, and heavily medicated to stop the shrieking was not on my bucket list.  (Her labs were fine so I was being silly and also, YAY!  Also?  I wonder how other people live when they don't feel constantly stalked by Death.  I assume they're happier, yes?)).

- The weekend was chock full of parties and playdates and swim lessons.  All great stuff but Matt had to work both days and my daughter spent all of Saturday demonstrating her very best elopement techniques near various busy streets so by Sunday I was looking forward to going back to work.  Hyperventilating over my mammoth corporation's money is exponentially easier than keeping my small child off the neighbor's front bumper.

- I took another half day yesterday to get a mammogram and Girl Check.  I'm sorry, I know you must be jealous of my lollygagging ways, but please note this is not the wrinkle-free, sag-free, mid-30s baseline "practice" mammogram.  Shit's gettin' real, yo.

- Many years ago I wrote this post about meeting my friend RK for the first time.  I opened with a line I was sure, ABSOLUTELY CERTAIN, came from a Mid-East class I took in school.  Except I've been watching old West Wing episodes at night because I don't have the emotional energy to invest in anything new and….  I am full of crap.  It was President Bartlett.  I'm sure Aaron Sorkin and/or my college prof were not the first people to have stumbled into this bit of wisdom but I now have the highly uncomfortable feeling that MY stumbling into said bit of wisdom did not come courtesy of my Stafford loans.  Since pretty much everything I know or believe seems to have originated with the WW series, I'm wondering if I could get my tuition back, please?

- I am the heaviest I've ever been, including those immediate postpartum days, and despite all the love yourself/don't buy into the media hype bullshit I'm full of self-loathing.  I have not suddenly taken to eating pans full of brownies by myself in the closet (though that is enticing), leaving age, stress, and the slow creep of the western civilization to blame.

- Compounding that fun is an epic, albeit self-diagnosed case of plantar fasciitis. Nothing starts my day of better than getting up out of bed and nearly collapsing to the floor.  Nothing helps fight Middle Age Spread than being unable to workout because my feet hurt because they're carrying too many pounds, preventing me from working out to lose said pounds.  Feeling young and vibrant I am not.

- I did sign up for a cheapie Parks & Rec yoga class. Matt might kill me for sneaking off twice a week but it would be soooo much worse if I didn't.  Because while I'm fairly certain this is Yoga Lite and it's not even challenging for a yoga-novice like me, it is amazingly relaxing and I leave feeling much less creaky.  I'm also leaving in that gorgeous late afternoon light amid all the spring bulbs my tax dollars bought, and it's just blissful.

- On my 2nd or 3rd session I'm pretty sure I fell asleep during the ending meditation bit.  I jerked awake and everyone else was already sitting up and the teacher was saying her goodbyes.  I think I should have been embarrassed but… it was weirdly nice.
And on that note I'm off to bed!

The Very Best Kind of Homecoming

On Wednesday The Girl was crying so much I finally to put her to bed at the unholy hour of 6:30.  And, to my great concern, she went to sleep immediately without complaint.  Passed out, really.

Clearly she was sick, right?  I was sure she'd be up puking at 3am but she actually just snuck in my bed around 4 and ground her teeth next to my ear until I stopped pretending to sleep.  But she was chipper & ate so off to school she went. 

Last night I picked her & The Boy up after work and headed to the store for a lovely rotisserie chicken & maybe some fancy foccacia or garlic sourdough.  Maybe a bag o'salad.  Did I mention Matt has been out of town again?  Cooking during these times is a luxury my sanity cannot afford.    

She was asleep in the back seat before we left the gas station.  Are they making her run laps at school?  What the hell?  [It will surprise none of you that fatigue without other symptoms immediately set off a tsunami of alarms.  The fact that I did not call the ped and immediately demand a blood draw yesterday is, I believe, a sign of my good mental health and maturity.  Well... that and it was after hours.]

So in lieu of a happy organic chicken raised on love & hand fed oats, humanely slaughtered after a simple prayer to the great poultry god, & slow roasted over an open flame of sustainably harvested hardwood, we hit the KFC drive thru.  

Oh, yes.  We did.  Because we'd had McD's the night before and nutritional variety is important.  

But there are some things that will just never taste as good as they did when you were 6:  bright orange mac & cheese, IHOP, ice cream drumsticks, and -turns out- KFC.  

The Boy, however, is not yet legally at the age of reason and practically licked his plate. 

Two hours later?  Puke.  From the "healthy" one.   

You know what we're out of?  Paper towels.  At least he hit the toilet….  mostly. 

Sadly for him, Matt had in the interim landed and made it back home - just in time to fetch a huge bowl and a trash bag.  Welcome home!

Diary of a Single Mom.

Editor's note:  There may have been a *slight* delay between the writing and the publishing here so you should probably interpret "last weekend" to mean 10-ish days ago. 

Matt worked all last weekend, Monday night, and then left Tuesday for Los Angeles, to help my Dad, back from his high sea adventure, pack up Gigi's things.  It was a belated Valentine's Day present for me (I know, so romantic) since my flight bennies are screwed up, I can't miss any more time from work, my low back wasn't up for hauling furniture and -mostly- because I really, really didn't want to see Gigi's empty house.

He was supposed to come back Friday but finally bought a ticket late Sunday after spending two days camped in various airports and a random hotel in Denver, courtesy of Winter Storm, Episode XVII and the airlines' flight cuts.  Yay.  

While there was significantly less laundry, we all missed him.  Some of us for more selfish reasons than others.  I didn't go running for 10 days and, well, bless all the single moms out there.  If you know one, go do something nice for her.  Buy her a coffee.  Or tell her she's still pretty, despite the uncombed hair and ragged nails.  I   She might have started crying if you had.

**************  

On Monday I was busy congratulating myself for all the Fun! Educational! things I'd done with the kids that weekend and marveling at how efficiently I unloaded the dishwasher while the coffee brewed.  I know!  Genius, right?  I should've gotten an award or something.

On Tuesday I folded a load of towels.  I decided the kitchen counters didn't really need to be wiped down that often but the kids were clean and stories read.  I can prioritize like a boss.

I'm not sure what the kids ate for dinner Wednesday and I KNOW one of them did not brush their teeth all day.  I fell asleep on a pillow pet next to one of them.  The one that kicks.  

Thursday morning I couldn't find the large white hairy dog.  He's usually impatiently waiting for me to go downstairs and let him out, but wasn't by the gate.  I thought maybe he'd slept downstairs but he wasn't there either and didn't come when I called.  Holy hell, had I accidentally left him out all night?  Full of remorse and thinking I was going to owe him a big steak, I called.  Nothing.  I saw the temperature gauge - 10 degrees.  Holy hell, I'd let my dog freeze to death!  They were going to take my children away from me and I'd have to move and change my name to avoid the hate mail.  

Dramatic Reenactment

[I found him happily curled up on a pile of laundry in my closet.  SOMEONE in this house insists on closing All Doors and had shut him up inside. *phew!*  All my black sweaters, however, appear unsalvageable].

SOMEONE, playing dress up.

I got to work at 9 and found out at 10 my father in law was bringing The Boy to my house after school, instead of my OCD OR-clean SIL's.  I rushed home at 11 to frantically hide piles, vacuum up the fuzzy elephant herd rolling around the floor, and throw something in the crockpot so the place didn't smell like dirty boy socks, despair, and large white hairy dog.

Jeeeezzz… house and reputation salvaged from the brink by pure panic grit (and a shockingly flexible schedule).  I fantasized about live in domestic help and bald dogs on the way back to the office.  

But I was triumphant by Friday. There was only one morning tardy, no emergency calls to plumbers, fire departments, or in-laws, and *bonus!* I hadn't let anyone freeze to death.  Whoot!

In celebration, we had movie night / camp out in Mom's room…. where I noticed The Boy scratching his head.  There'd been a note a few weeks ago about head lice at school so I panicked and rushed him into the bathroom, fully prepared to shave his head bald, but it was just a rash on his neck.

[I find the phrase "just a rash" hysterically funny now.]

He took a quick shower & was fine so we finished the movie & he went to bed.  Saturday morning his entire torso was red & welty.  I made an appointment with his ped.  The hives disappeared.  (Never, ever underestimate the healing power of a phone call.)  I cancelled the appointment.  They came back, worse…. naturally, minutes after the doctor's office closed.  I called the nurse line and got their blessing for Benadryl.  Which worked great, except when the dose wore off the hives came back & had spread down to his knees & hands.

By Sunday morning his entire back looked like a 3rd degree burn with blisters, and the welts were perilously close to his eyes.  Darn it!  I waved my white flag, called the in laws to watch The Girl, and hauled The Boy off to the ER where they were appropriately impressed and gave him some Prednisone.

Best part of the day?  He thought it tasted like egg nog.

I think the best part of the day really was that I had people to call.  Maybe not people I don't have to vacuum for, but people nonetheless.  And not that I couldn't have wrangled The Girl in the ER, but I don't think she's supposed to play with the Sharps container and it was easier to focus on the one racing toward anaphylaxis shock.  If you know someone going it alone?  Even short term?  Be their people and bring coffee.  Lots & lots of coffee.  And maybe some extra Benadryl, just in case. 

Shedding on the couch this time, not my sweaters.

The Daily Grind

...continues.  I was thisclose to being caught up when my co-worker quit this week. *sigh*  
Work-life balance is a myth. 

However, for pure entertainment purposes, I have four post-ettes ripped almost right from the headlines ...of that month old paper you haven't recycled yet.  I tell ya, it's almost just like CNN over here. 

Angelina Jolie gets a double mastectomy
This sparked quite a bit of conversation online but, although we have lots of other issues, breast cancer hasn't made an appearance in my near family.  Of course Gigi only had boys and my mom is an only child so my statistical group might be a little skewed, but let's not quibble.  So about a month ago I went to see my ob-gyn because the girls were sore, aching all the way down to the muscle and getting worse.  He said...      (*dramatic pause*)

I SHOULD DRINK LESS COFFEE.

(*sob*)
I'm not trying to make light of this and I know I should be grateful it's not anything real, but please, please, please don't take away my coffee.  Please?

Parents sue over their son's photo
I've thought off & on about the risks of putting my girl's picture out into the world but this space is tiny enough to avoid the creeps' radars and haven't done anything about it.  But I don't let the schools use or publish either kids' photo.  Because I am a hypocrite.  Of which I was again reminded when The Girl's daycare primary called a couple weeks ago to ask if I wanted her included in the end of year video.  I said no but thanked them for asking - I'm sure they were just as worried I'd flip out over the exclusion as the potential liability for breaching the 'no photo' form.  It's got to be tough for them to navigate a bunch of ferociously overly-sensitive parents.  Meanwhile I'm on a self imposed photo blog ban till I get this watermarking thing figured out.  Time to follow my own obscure, conflicting, Kafka-like rules. 

This post by a huge NDSS fundraiser, telling them off.
Unlike the NDSS, our local group’s new president has taken the ‘advocacy’ in their mission statement to heart and has been emailing updates on the Robert Ethan Saylor case, calls to contact state congressmen to preserve early intervention funding, and federal Reps on the seclusion/restraint bill.  Weirdly I can push, bully, and charm people on the phone all day at work without qualm, but I hate-hate-hate talking to anyone at home.  Cable people and babysitters are solely Matt’s responsibility.  But goaded into action by my local group, I summoned up all my emotional reserves and made whopping 1 minute phone calls to each of my Reps’ snarky staffers.  And then I signed up for this year’s Step Up walk [ours is a “Step Up,” not a Buddy Walk, so they don’t have to kick back any of their money to the NDSS] because I can’t complain about the national groups' colossal failures without supporting my group when it’s doing it right.  I’m not that much of a hypocrite.

Although I gave my friends and family exactly two weeks notice and of course everyone is booked. *sigh*  Baby steps, people, baby steps.

Manhattan women buy disability guides
I know you all heard about this, but it reminded me I never wrote about our last trip to Disney in January.  Sadly it will likely be literally the LAST trip, because just after we came home Disney abruptly killed our travel industry discount, both cars now need timing belts (and happy car fairy dust), and we (surprise!) didn't withhold nearly enough money last year for the IRS.  Boo.

Oh, wait...  So if we stand in line with the nice lady from New York and her family she'd pay for our trip?  We wouldn't have to talk to her, or anything, would we?  Hmmm.  

I'm joking!  (kind of.  maybe.  depends on the offer - what's our souvenir allowance?)

We were there to run Disney's half marathon but I brilliantly took the kids to the park the day before in awful, terrible, no good, very bad shoes.  My feet hurt by the end of the day and they hurt worse the next morning, right before I was supposed to run 13 miles on them.  I was lucky though, because I ran the whole way with this nice lady here and it was the first time I've been able to talk and run at the same time.  It was a personal worst, as far as time goes, and I whimpered for days after like I was walking on broken glass, but I didn't think you could have that much fun running.  It was awesome. 

(ms. see-tee-via!)

There were fireworks!  

Every race needs fireworks.

At one point in the park I was holding The Girl while Matt and The Boy were off procuring provisions.  A guy approached us, said my girl was gorgeous (of course!), and to dispel the potential creepiness, he waved over at his family, including an older boy with Ds, they waved back, and we all chuckled a bit.  Then he palmed his special needs pass like it was hot watch and asked if I knew what it was.  Then I really laughed and showed him ours.  Who knew?  There really IS a secret club card.  

I truly hope that the socialite doesn't screw it up for everyone else.  The first time we went I felt a little guilty because The Girl wasn't any more of a pill than any other 3 year old, but there's no way my almost-5 year old tornado could stand in line for an hour or two.  Not a chance.  Even the couple times the special needs line was long and we had to wait were not great - she's too big to hold for long, yelled to get out of her stroller, and kept trying to bolt thru the crowds.  I suppose this would be more persuasive for Disney if I didn't preempt my story by saying we were too poor to visit but we'll get back - one way or another!

Day Two

Random thoughts as Gigi sleeps:
I'm surprised every time by how out of sorts I get in hospitals.  I mean, who doesn't, right?  But, while I wouldn't describe them as flashbacks, the door to the little closet in my head where I stash memories breaks, and I keep tripping over the emotional crap spilling into the hallway.

I remember looking over at The Girl, seconds after my c-section, as the NICU staff put an enormous oxygen mask over her face & told her to breath.  She did, obviously, but it certainly wasn't a natural hippy birth in a field of sunflowers.

I also think a lot about Brennan, still warm but not breathing.  Never going to breath.
Fucking hospitals.

I can't write about Gigi.  First, because she'd kill me and second, because this is really, really hard.

So on to lighter topics:.
On the way out I had to change planes in Las Vegas.  I didn't notice any ruckus but as we were boarding they were telling someone he wasn't getting on the flight.  Probably a frequent event in Las  Vegas but this was a short, middle aged accountant type in a button down shirt, not an inebriated frat boy.

There was also a curvy woman in a skin tight, low cut, butt-cheek short dress and bight pink hooker shoes.  She was right behind me in line so... I heard her on the phone asking her kids if they got their homework done, telling them to be good for grandma, and wishing them sweet dreams.  I am an asshole.

After a thorough study of the family amenities in several different hospitals' critical care wings, I can confidently announce Gigi's facility fails.  If I ever win the lottery I'm donating money to this ICU for better chairs.

Hug your families tonight.

Gigi

Gigi is in the hospital.  First report was that she'd fallen, which is significant enough at 94, but also that she was also only semi-conscious.  She'd fallen a couple months ago without breaking anything but was taking a long time to heal.  I don't know if it was because this was her second fall, the words semi-conscious, or knowing we were overdue for a visit but I put on my out of office greetings and told the boss I was going California.

Never have I been so grateful for Matt's flight benefits.  I drove home, threw god knows what into a bag and was at the airport with nary a thought.  My sister called from the hospital mid-process and said it wasn't just a fall, she had an aneurysm and bleeding in her brain.  Apparently it's a LITTLE aneurysm and brain bleed, as these things go, and she has improved, is talking & answering questions appropriately, but I'm sitting next to her in ICU right now and... well, she's in ICU and apparently has a DNR.  A fractured hip would have been better.  I don't even know what to say about the DNR.

I've spent time in the NICU, PICU, and now the ICU, watching people I love sleep with one eye and their heart rate monitors with the other.  Not exactly a trifecta of awesomeness but we are very very fortunate - fortunate she's getting good care, that I was able to come here to be with her without pawning my car for a plane ticket, and that our family, for all its warts & blow ups, rallies when it matters.

We're also apparently damn lucky she's here at all.  She was on the phone with her bank when they heard a sudden clatter.  Instead of hanging up a probable dropped call, they called 911.  Her neighbor rode with her in the ambulance and knew to call my dad.  Much as I don't like most of them much of the time, people matter.

If y'all have been reading along, you'll know I'm not religious and wouldn't know a prayer from a telegram (I'm going to hell for sure) but if you want to send some warm healing thoughts out into the universe, I wouldn't mind.  This blog exists because Gigi got a computer one Christmas and it was easier to post her great-grandchildren's pictures on line, then to print & ship.  Laziness, the seed of every great idea.  

Bleach

Is winter over yet?  Can it be?  Please?  Now!?  I don't think this house has been un-infectious since November.  One person gets over something, passes it along to someone else, and then promptly goes out and picks up a brand new set of symptoms.  We are a swirling mass of virus and bacteria.  Wanna come over for some wine?  

This weekend, much to my delight, the symptoms included midnight vomiting.  Remember that scene in Stand By Me where one person starts vomiting and the smell makes everyone else start puking too?  Yeah, sort of like that.  We later turned the news on to hear that some new especially virulent strain of norovirus was running amuck.  This article calls it the "Ferrari of the Virus field".  I always thought getting a Ferrari would be... I dunno... more FUN.

So the washing machine hasn't stopped and select portions of the carpet have been steam cleaned.  I did sneak out for a 4 hour breakfast at Denny's with the ever lovely RK yesterday (for the record, it was before I heard about the Ferraris, though I didn't let her hug me and we had separate creamers), so it hasn't been all grim pestilence around here, but I don't think a certain little girl is leaving the house tomorrow.

I also, in one brief shining weekend, ran a half marathon with my un-tagable, once-internet-now-IRL friend at Disney.  I'd signed up in a giddy moment after seeing it linked on FB, not realizing that maybe taking the family to Disney two months after a trip to Ireland and mere weeks after Christmas might not be the most fiscally responsible decision ever, but lots of people have survived on bread and water for a lot longer than we're going to have to, so Win!  I still have to upload pictures so will save that story for another day (spoiler alert:  I did not win).  Just wanted to pop in here & let y'all know we're still hanging on by our cracked, dry, over-washed hands.

(27/31) - Two for one.

Last fall The Girl went thru a 6-ish week long period of "GI upset".  Daycare called about every other day for us to come rescue her and we went thru testing, negotiating, and then outright begging for them to knock that off because taking 1.5 months off work is a really poor career move.

All the tests were negative and her doctor just said it can sometimes take six weeks to resolve.  SIX WEEKS.  Much to our dismay he was right about the time frame - it was Not Fun.

We seem to be on repeat.  It started sometime before Halloween and I got a call yesterday to pick her up (thankfully not till 5).  I'm still on the 4x10 plan, so am home with her today, but I'm really really, nervous about this next month.  Matt's taking off on Saturday for a week-long wedding shindig and I'm suppose to join him next Thursday.  There are already scheduling shenanigans and adding this to the stew will not make anything easier.

[Destination wedding!  I had to renew my passport!  ...So naturally the washing machine just threw a ball bearing, the toaster is only toasting one side, and I have to take my computer in because it's moving slower than the continents.  And now we have GI issues.  Murphy's law reigns supreme!]

She won't nap in her own room anymore but the couch is fair game.

She's been wearing her Halloween wings nearly non-stop this past week.... 

So many "angel" jokes, so little space.

~~~~~~~~~~~~~~~

Totally unrelated:

Funny things my son said about the election, below.  Posted here because FB has seen enough politics - not necessarily mine, except for my one outburst yesterday, but I think everyone is tired.  I realize yesterday's post was more anti-GOP than pro-Dem, and I didn't cover the economy, or the other 17 issues near & dear to my heart, but I'm happier having chucked my two pennies into the pool.  To all my friends who voted for the other guy - I still love you.
(Yes, even YOU!)

~  When explaining health insurance to him, he kept calling it life insurance.
Which it is, really.

~  I explained how having insurance makes it easier to go to the doctor if you're sick, even when you don't have any money.
"If you're sick or...  if you get bitten by a cobra!"
Yes, even when you are bitten by a cobra (?!).

~  This morning, while I was flipping between news stations:
"It's almost like the country has two presidents."
Hmmm.  I hope not, buddy.

23/31 - Flight 2 of 3, Eavesdropping

On flight #2/3 yesterday, after a little nap to recover from my 4am wake up call, I started eavesdropping on the woman in front me as she told Random Guy all about her adventures with genetic counseling, searching for various specialists, and her child's eventual diagnosis with.... Wait!  What?  Darn chatty pilots.  Much as I love to talk special needs shop, my aversion to conversing with strangers won out so I didn't tap mom on the shoulder and demand to know which nurse at Children's she'd been complaining about.  Epitome of social refinement, I am.  What I gathered between revving jets and cockpit announcements was that her child was eventually diagnosed with something rare.

Also that the geneticist had apparently tried to reassure them (pre-natally?) by saying, "Worst case scenario it's Down syndrome."

Worst case?  WORST CASE?!  I have no idea what this child ended up with and/or what set of data they were looking at but methinks the geneticist needs to get out more.

I have read some horrific "finding out" stories this month, courtesy of 31 for 21.  Medical professionals who don't even bother to ask if, just when they should schedule a termination.  Doctors who deliver the news like a death sentence, then flee the room.  I've long believed my relatively easy adjustment was a twisted side effect of losing Brennan.  Heart surgery?  Scary.  Cognitive delays?  Not ideal.  But, hey, the kid's alive, so we can deal.

But in retrospect, and partially prompted by a conversation on facebo0k, I have to give a nod to a few people.  At the fourth (!) ultrasound appointment, when the tech took a long, long time and then went to fetch the doctor because The Girl's heart was missing its center, they marched me right upstairs to the cardiologist's office.  I vaguely remember Matt being there so I'm no longer sure if this was that  visit, when they told me about the exceptionally high correlation between AVSD and Down syndrome or a second prenatal visit after we'd confirmed her chromosomal count via amino.  I know Matt came that first day, but not if he arrived in time to meet the doctor.  I do remember the cardiologist saying, relaxed and upbeat, "They've completely revamped they way they teach these kids and she'll be more productive than half the people out there."

I don't remember having any conversations about it with my OB (I do like him but my pregnancy was mostly managed by the perinatal center), but at the first visit after our news became official, the OB nurse ran and grabbed a Christmas card from one of their patients - a little girl and her brother with Down syndrome, snuggling.  She said, "I only know one other family... but aren't they beautiful?"

She is reason I send Christmas cards to all our medical providers.

I'm also going to give a little reluctant nod to all the other people who told me what sweet, loving children "they" are.  It rankles me now as yet another stereotype, but at the time I'll admit a drew a little comfort from sweet & loving.  That didn't sound too bad, y'know?

You know what sounds bad?  Worst case.  You know what might color a mom's reaction to her newly diagnosed baby?  Worst case.  I'm not one of those mythical creatures who believe babies with a third 21st chromosome are angels sent by God - that little bit of extra does bring some extra wrinkles to life.  But worst case is not this girl, climbing all over the fort, requesting her favorite "bear book", and pouting tonight because Mommy was gone for 4 days.  Worst case is calling funeral homes to see if they can pick your baby up from the hospital morgue.  Worst case is a medical professional not knowing what.the.fuck. she is talking about.

19/31 - Five Whoots!

Darn it!  I fell behind in my 31/31 quest.  Rambly nonsensical post to follow:

• I jinxed us hard by writing The Girl isn't sickly.  We went out to celebrate our 13 year anniversary on Saturday with some friends, picked up the kids from my awesome SIL and heard a little crou...  never mind, I'm sure it's just the night air. 
• She woke up two hours later crying with a full blown croupy cough. Crap!  
• Sunday I spent alternatively holding her or leaving the room to escape the incessant teeth grinding and inconsolable weepiness.  Matt took The Boy out on errands and then went to work.  Chicken.  
• Matt arranged to stay home Monday and... she was dancing in the living room.  To his credit, he did not actually say I don't know why you were so stressed out, but I know he was thinking it.  Hrrumph! 
• Monday night she woke up again at 11, crying and with another fever.  Stinker. 
• Matt didn't comb her hair all day and she had white girl dreadlocks like Mel in Braveheart.
• I ended up combing them out at midnight because first, I was horrified & they were only going to get worse, but also because if we did end up having to take her to the hospital I didn't want them to call social services.  It was BAD  (her hair - the cough was equivocal).  
• Matt & I split CoughWatch today but now I think I'm catching something too - a little clammy & short of breath on & off, though I made into work for my conference calls.  And I pulled something in my left shoulder, probably holding The Girl all day Sunday.  You know what else includes clamminess, shortness of breath, & left arm pain?  Yeah, that.  I had a running internal conversation with myself about whether I really wanted to spend $50 at urgent care for someone to tell me I pulled something and am probably getting a cold and not the other thing, but ended up feeling better so managed to avoid being ridiculous.  Whoot!  
• Things I got done today:  
• One scheduled call with a vendor, 30 minutes late, girl howling in the background.
• One call to the school, an hour after it began, to tell them she was still sick, girl loudly laughing in the background. 
• RSVP'd for my SIL's shower which I should have done 2 weeks ago. 
• Remembered I still don't have a hotel reservation for my biz trip to TX on Thursday.
• Failed to actually make said reservation. 
• Re-washed the same load of towels I first washed on xxxxx.  PLACED INTO DRYER.  Whoot!  
• Failed to find the little slip of paper with the colossally inconvenient unilaterally scheduled parent-teacher conference time for The Girl's school.  Too embarrassed to email the teacher since she also recently reminded me I had forgotten to email Transport one day to cancel her bus, and I forgot to return a permission form in the 18 allotted hours.  Passed the task onto Matt.  Whoot! 
• Made it into work on time for my other calls.  Whoot!  
• Received an email from the girl's daycare scheduling their parent-teacher conference, that ended with "Thanks for being awesome". 
• I'm choosing to believe that was not all sarcastic.  Right?  So that get's a Whoot! too.  

16/31 - 8643 times, Part II

Part I is here.  Or a whopping two days ago if you want to use that little 'older' button.

Part I also took a long detour down the memory lane of prior procedures.  Good times.  Anywhoo.... one fine September morning we visited the ENT who pronounced her tubes glorious and we got an old fashioned hearing test which my daughter rocked.  Then we went down to Radiology where my suddenly very grown up girl sat calmly, one leg crossed, flipping thru a magazine.

Well, she did for about 10 minutes or so.  Then we played peek-a-boo.

Children with Down syndrome are at higher risk for AtlantoAxial Instability, or AAI.  There are links here and here that explain it but in short, the ligaments holding the cervical vertebrae in place can be too loose, increasing the risk that those same vertebrae could smoosh her spinal cord.  Smooshy hugs are good.  Smooshed spinal cords are bad.  Just in case that was unclear to anyone.

There's apparently a little bit of controversy about the necessity of screening since AAI is fairly rare, but my pediatrician is wonderful, I'm of the test for it school, since we are the medical 1%-ers (sadly not the fiscal ones), and I don't like surprises.

When done, it's usually around age 3.  We had it done then too but there was this thing that the radiologist wasn't sure about.  So ensued a fiasco getting the films copied and off to Children's for a second reading (I got a very cool look at her insides though).  Children's thought The Girl's neck was more or less fine ("grossly normal" in medi-speak, which never fails to crack me up), but they did not have kind words about the quality of the films or the one missing angle that someone forgot to shoot, and recommended the films be re-done.

Which is has taken me 9 months to do.  I am an awesome parent.  But I was reassured by "grossly normal" and, as I mentioned in Part I, running up to Children's Hospital is no small task.  We've been there since, of course, but the timing never worked out (and/or we'd forget.  Like I said, awesome parenting).  Also, The Girl's activity level hardly suggests neck trouble.

But we finally got the films re-shot, went off for our picnic and playtime, where she climbed 10' into the air, then we landed in the pediatrician's office that afternoon.  The films had already been read and the report faxed over, because Children's Hospital is amazing.

You know when positive findings aren't actually positive?  They thought the gap in her neck was over the clinically critical 5mm threshold.  I nearly hyperventilated in the ped's office.  She'd just been climbing!  She could have fallen!  You know the experts you never want to need?  Oncologists, Tropical disease experts... neurosurgeons.  We now have our very own neurosurgeon.  Yeah us.

In that moment, and on the drive home, I will tell you I was in a very unhappy place.  I know it was not cancer, not fatal, not the end of the world.  I know this.  But I know something of spinal fusions (work, not personally) and they are a really big frikkin' deal, both long and short term.  What's more, I understood that children with fusions get halos for 6 months.  How in the effing hell are we going to manage that?  It's not like we can send her to daycare in a halo.  And did I mention what a little monkey she is?  She climbs everything.  The chances of her not dislodging all that cervical hardware and paralyzing herself were non-existant.

There was also that sickly falling feeling.  All of my major life events have struck without warning - like sniper shots on the highway.  Losing Brennan within sight of his due date to a nigh unheard of cord accident.  The Girl's diagnosis coming after a negative quad screen and three (THREE!) clean Level II fancy high risk ultrasounds.  I'm not exactly naive.  I am paid professionally to contemplate things gone wrong & assign monetary value to tragedy.  I take precautions.  Read up on risks.  But holy cripes, I still get knocked down.  Her neck had been (mostly) cleared! 

It took two weeks to get in to see the neurosurgeon.  Two weeks and twenty minutes - there is a three floor difference between neurology and neurosurgery.  *Ahem*  But he remeasured the films and decided the gap was a completely safe 4.5mm.  I KNOW, RIGHT?  So much adrenaline and anxiety spilled for...  nothing.  Well, spilled for 0.5mm.  Which is tiny!  I felt the solid ground returning under my feet.  I chuckled at my own over-reaction.

Except he was still talking, "But I'm glad you came in today.  Do you see this area right here?  C2-C3?".

Why yes, Doctor, I do see that huge gap and completely crooked spot on my daughter's spine.  The spot that hadn't been mentioned in the initial radiology report.  How very observant you are.  

Whoosh!  There went the floor again.

He said he was going to dig up the first set of films and have someone else look at all of them.  We might need a MRI.  I said I would have no idea if The Girl was experiencing symptoms of spinal cord compression.  She'll sign boo-boo if she scrapes something, but neither of us know the signs for "Mommy, my legs are tingling and I can't feel my pinkie finger."

This was on a Friday.  He said he'd call on Monday.  We left and I immediately called her heart surgeon because I'd also told the neuro I didn't think she could get a MRI because of the wires holding her chest together.  Things you never wanted to do:  Call the heart surgeon to see if the neurosurgeon can proceed.  Turns out?  The wires are titanium and titanium is MRI compatible.

As completely ridiculous as it sounds, when the cardiac nurse called to tell me this, that one little detail just broke me.  Tears & sniffles at my desk.  It was probably just stress &/or relief that something went right but how very, very thoughtful of them.  What a lovely bit of foresight and planning.  If the medical community can get that right, then we will be OK.

The neuro's nurse ended up calling Tuesday morning:  pseudo-subluxation at C2-3.  Which is apparently quite common.  No MRI.  Just repeat films next year.  *Phew!*

I know in Part 1 I tried to stress how generally healthy my girl is.  I'd hate for an expectant mom to read this and think we spend all our spare time in the hospital.  I also know this was the most anti-climatic post in the history of the internet.  She's fine!  I don't know if my reaction is normal - fusions ARE a big deal, if I'm veering off into tinfoil hat paranoia, or if this is a sign of some post-traumatic schtick that I have to go thru every time I have to make a follow up phone call.  We have not quite reached 8643 follow up phones calls, but I'm hoping I'll be all better by then.  Good times, indeed.

Relax, mom. Have a cookie.

14/31 - 8643 times, Part I

We had a little bit of an adventure the last few weeks.  At the end of September I pulled off one of those mythical scheduling coups:  ENT in the morning, repeat neck X-rays while we were at Children's, then The Girl's 4 year check up in the afternoon.  We even had enough time for a picnic at the playground and a nap between appointments.  It was brilliant except I burned an insane amount of gas driving around while she napped, trying unsuccessfully to find a drive thru coffee place -  both my fancy new smart phone and the great American Starbucks saturation plan were miserable failures.

We live in the sticks and it's an hour drive into town so these appointments are at a minimum a half day off work.  Of course I work about 2 exits up from Children's and driving into work, back to get the kid in question, back into town, and then home again is a special kind of hell to be avoided at all costs, so I usually end up taking the whole day off.  I joke a lot about our phalanx of specialists but I'd hate to give anyone the impression The Girl is a sickly creature.  She is most decidedly not.  She gets a couple extra things checked each year around this time and has had a couple little things fixed.  Well, a couple little things and her heart, which is a critical organ for most people & thus kind of a big deal, but rest were minor outpatient procedures.

Although someone needs to please remind me of this non-chalant attitude next time we go to Childrens, because in the days leading up to these "minor outpatient procedures" I spiral into a dark place obsessing about all the things that can go wrong when you have a tube down your throat and federally controlled substances being pumped into your veins.

For the record, The Girl has had her eyes fixed twice and an ABR/ear tubes in/adenoids removed once.  Only one set of adenoids to remove, thank goodness.  She's roughly had about one surgery/year.

Funny story about the last dealio with the ENT:  after we were checked in, hungry and grouchy because she couldn't eat breakfast, I pushed her in her little car about 8643 times around the loop of the same day surgery unit.  As we got closer to her scheduled time and people started to gather in her room, the nurse manager waved us on for a few more loops.  She said she recognized us and knew we were old pros so wasn't going to make us wait in the room.

I did actually recognize her, but not a chance in hell she recognized us from the previous year.  Not when she has at least (?) 30 rooms on that floor turning over 2-3x/day filled with little kids getting similar procedures, assuredly some of them with Ds too?  I figured she'd looked thru the The Girl's chart, saw we were repeat customers, and was being nice but it was not in my life plan to be on a first name basis with the nurse manager of the surgical ward at Children's Hospital.  [That or she had us mixed up with some other little girl with Ds but let's not go there].

I also just remembered that I never gave a good post-op summary of that last procedure.  I mentioned via email the ABR confirmed her hearing was good, but I never talked about miracle of the adenoidectomy.  She started going to daycare when she was 2 and her nose... Oh!  Her poor little nose had green gunk in it for the next 18 months.  Every now and then it would get better & we'd think her previously sheltered immune system had finally caught up with the pestilence that is community care, only for it to slime up again a few days later.  It was Not Pleasant.  Turns out the adenoids were little viral/bacterial petri dishes and within days of their demise, and henceforth ever after, her nose has been as clean as a Disney restroom.  Had I known that was going to happen I would have taken them out myself.

Does anyone get the feeling I'm avoiding the topic at hand?  I might be.  But because this post is so long already & it's already 11:30...  I hate to do this but this is going to be Part I.  Good night!

EVERYTHING!

Have I told you all that I love you lately?  I do.  I love this space, and your spaces, and that my whining last night about some seriously first world problems is met with sympathy & pats on the head, not the eye rolling it probably deserved.  And, as these things often do, the moment passed and today I am filled with Yes, I can too do EVERYTHING.  All Half the laundry is folded, I ran(!), I'm here - about to gift you with some hyper adorable pictures, AND I got that work thing done today, that I'd been avoiding for weeks, that I'd lugged home for the weekend and then (obviously) felt guilty about not doing.  I swear it was like a giant evil eye glaring at me from the kitchen counter all weekend.  Never, never, never bring work home.

 Yes, sort of like this evil eye.  

[I did not get a chance to read YOUR lovely posts, fold the other half of the laundry or spend any time with the kids who were already in bed when I got home.  And I only got 6 hours of sleep, which might account for the giddy tone here.]

Miscellanea from last week ~
IEP meeting update:  I didn't want everyone's guard up and I didn't really know what I was asking for, so I requested an "information gathering meeting," to talk about The Girl's communication in class.  The Girl's teacher, who at first meet just seemed too young and waaaayyy too well put together to be spending her day with preschoolers really impressed me (proving once again my first reactions are always wrong).  She showed me some of the matching/selecting activities they do, that she can do without ASL, and it sounds like she really is trying to pick up some signs.  The SLP's office is between the two pre-K classes so she (apparently) pops her head in during circle time or at the activity tables and demonstrates the sign of the hour or something.  We talked about iPads and assistive speech apps and they're going to try out some of the iPad programs to see what works before we sink a bunch of money into something.  No one thought signing AND using a speech app was a bad idea, even though the one speaker at the NDSC conference said we should stick with one system...?  Facebook was all for "multi-modalities".  I dunno.  I can make the argument either way - we'll try it out and see how it goes.

Yup, just keep pressing buttons to see what happens.

Oh, and I brought cookies.  They never eat during these meetings which I suppose is the professional thing to do, to not smear crumbs and chocolate all over the official IEP document, but I hope they dug in later.  Somebody better enjoy them since I spent a whole seven minutes in the store picking them out.

Did someone say cookies?    

Also, since I am mom of the year, I completely forgot to ask about PROMPT training and apraxia.  Since this was just a "chat" we're going to have a formal IEP meeting in a month to touch base again, so we'll cover it then.  I still want to observe the classroom at some point too, though the logistics of that might drown me.

Did I mention The Girl is the proud new owner of an iPad?  Shortly after this post, my SIL ran into a mom and her daughter, who has Ds, and she was raving about their iPad and Proloquo2go.  My super-awesome SIL then plotted with my other super-awesome SIL and my super-awesome MIL and they all combined funds to gift The Girl with a very early, exceedingly generous Christmas present.  WOW, right?  I am terrified I'm going to break it.  I'm terrified she's going to break it.  I had also gone to dinner at SIL's home the night before they gave it to us and completely forgot to bring anything, not even a bottle of wine - I am a HUGE schmuck.

Ha!  Mommy said "Schmuck!"

And, last, right after the IEP meeting last Monday we drove for an hour into town to get labs done at the Children's Hospital.  We've had them done closer to home before but it would have been easier to lop off a finger and hold the bleeding stump over a bowl, for all the trauma and random useless needle pokes inflicted on the poor girl.  At Childrens we were in & out with only a single tear shed.  Results came back today & we're good!.

The pout.  Practicing for next year's labs. 

Actually this was right before The Boy's 8:30am soccer game and we had the unmitigated GALL to go thru McD's drive thru for coffee without getting her anything.  MEANEST PARENTS E.V.E.R.