Growth

The Girl's biennial cardiology check up was a couple weeks ago.  There was modest bribery required for the ultrasound but compared to years past when she had to be held down, screaming, it was a massive success.  She's growing up. 

As we waited for the doctor at the end, I heard him outside the door, "Oh.... well now.  That's interesting." 

Interesting, in the clinical setting, is by definition bad.  Especially in that sad, flat tone he used. 

But this is not a story about PTSD or flashbacks.  I sighed, but didn't feel the bottom of yet another cliff come rushing toward us.  Which is, I suppose, progress.  Maybe I'm finally growing up too.

Turns out his comment had nothing to do with us and he pronounced her heart repair nigh perfect.  Come back in 2 years.

In the waiting room, before the bribes and the all clear, there had been 3 children giving my daughter the side eye.  At one point the oldest hissed loudly at her brother to STOP STARING.  I ignored them because I do not need to school every human being with whom my daughter comes into contact.  Their mother eventually came out holding a very small baby, gave my girl a hard look, then suggested her children all say goodbye to their Friend in a too bright voice.  The voice that meant Very Special Friend, capitalized, and that makes my teeth hurt from its forced gaiety and saccharine.  I ignored her too because I am not going sanction such awkwardness and the kids hadn't even been playing together and ffs, lady, really?

Except she turned as she was leaving and her baby had the most beautiful almond eyes....

Oops.

I dimly remember stalking people in the grocery store and stumbling over myself and my words when my girl was small and I didn't know What This All Meant (also capitalized).  We have come such a long way.  I hope that mother and all her Very Special Friends find peace.  I wish whatever the doctor was reading was only mildly interesting and didn't involve his newest patient.  I think maybe I could try to be less of a dick around strangers. 

Top of Mt Tam in CA - no cliffs involved.

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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

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.

Delays and obfuscations

It looks like my girl's ABR- ear exam- maybe tubes- echo***- adenoidectomy has to be rescheduled.  It was set for the 14th.  Yes, Valentine's Day, I know.  So much for that surprise romantic getaway to Paris - though I was hoping to find lots & lots of chocolate at the nurse's station.  But they didn't leave enough time for the adenoids because they

    A/didn't believe me when I said she had sleep apnea, 

    B/till they got her sleep study results, or 

    C/they forgot.  

On the one hand, I'm pleased because they'd scheduled her at 5:30pm.  5:30!  That's when most people are going home.  I didn't want her ENT or anesthesiologist to be yawning and wondering how pissed off their paramour was because they were missing a romantic dinner.  Or worried that all the florists were going to be closed by the time they were done, so let's hurry up, and... oops!

We don't want any oops-es.  

Of course I trust all her her medical peeps are consummate professionals and can handle a little tube insertion blindfolded but she was also supposed to be NPO after 8am.  Translation:  nil per os.  Nothing by mouth after 8am.  Do these people not have children?  Have YOU ever not fed a 3 year old for 9 1/2 hours?  Heh.  Let's just say that terrified me I didn't think the day was going to be awesome quality bonding time.  

On the other hand this is just more delay -  more days, more weeks where she might not be hearing us, where the little communication highways in her head aren't being built.  Yeesh.  Not that I'm anxious or anything.  

     ***Way, way, wayyyy back at her 3 year check up, otherwise known as The Great Referring, when we set out to get a sleep study, hearing test, new orthotic inserts, AAI X-rays, & to find a good pediatric dentist, I thought she might have to be sedated for a few items as she can, occasionally, like any other 3 year old, resist being prodded and poked.  I thought the initial visits were pro forma and all her peeps would have to reconvene at the hospital on some magical date in which all 27 of them were free.  Happily, the X-rays and DDS visits were easy.  It was only at her cardiology appointment, where she's been a thousand times, that wasn't even on my Things To Do While Sedated radar, that she decided Enough Was Enough.  NO MORE.  Can't say I blame the kid but annual echo cardiograms make mommy sleep better.

~~~~~~~~~~~

Boulder-dash Dailies - 

Friday:  My son, waking up in our bed (of course), before even lifting his head off the pillow says, "You know what I'm MOST excited about today?"  We should all wake up thusly.

Saturday:  My girl is walking around the house in my heels as I write this.  Tragically, I have not bought new camera batteries yet.  She has mastered The Heel.  I didn't till I was well into in my 20s.  Atta girl.  

Date Night!

...sorry about last night, I was grumpy.  My girl had her special DDS visit scheduled for 8am this morning and I'd realized late last night I'd forgotten to call for her prophylactic antibiotic (needed because of her heart surgery) so I was highly annoyed with myself.  The third anniversary of her heart surgery was on Friday, the 18th (which I also was going to write about), so you'd think it would have crossed my mind.  The dentist's fancy website said their first visit was to be just a meet and greet &, even if he managed to look in her mouth, there was no way my girl was going to let anyone clean her teeth but, just in case miracles do happen, I was going to call the cardiologist on our drive in & swing by a drug store so it wasn't entirely hopeless but still.... of all the things to let slip. 

[Turns out Matt had something come up at work & had to leave super early, so I ended up calling at 7:50, when they opened, to cancel our 8am appointment.  Groveling doesn't even begin to cover it - this is The Guy with hospital privileges who can take care of her teeth while she's sedated when/if we get her ears tubed, so I don't want to alienate the staff.  Also, he won't schedule a sedated cleaning till we try the old fashioned way and their next available isn't till December, which means now IF we do get tubes put in and shoot for the fabled double ENT-DDS booking, it won't be till January, which ...(deep breath)... is a Brand New Deductible Year.  Awesome.]

But onto happier stories - DATE NIGHT!  Matt had a gift certificate for PF Changs, I have been clutching my $4 Groupon movie tickets for months, and Matt's parents were free to watch the kids...  could it really be?

Turns out PF Changs had an almost 2 hour wait so we drove around and found a cute little Mexican place with live music (well, a guy & a guitar. But he was good!).  While waiting to get in, we were smirking at the middle age suburban moms wearing their Twilight T-shirts who had clearly gathered for the opening night of episode XVI (or whatever).  They had a LIFE SIZED EDWARD CUT OUT with them at their table.  Oh my....

Sorry, I know some of y'all like it but I just don't get it.  She's EIGHTEEN.  All that staring longingly into each others' eyes...  Honey, you may want to jump him join him for all of eternity, but I guarantee you will not still think he's as charming when he pretends not to know where the laundry hamper is after your 213th anniversary.  Also, why do they keep repeating high school?  Very few people I know actually enjoyed high school (lord knows I didn't).  And it's the same course material, repeated ad nauseum.  For eternity.  How many times can one person take Algebra II?  You'd think after the 7th or 8th time he'd ace it and, in a nice suburban school like that, the teachers would notice and pull him aside to encourage him to take Trig, instead.  Why don't they attend college and get a triple major?  Revolutionary French literature, Central American botany, and, say, enology (vocab word!)?  Then the following decade they can study Shakespeare and modern dance.  That would at least be interesting.  And ol' Ed wouldn't have to hit on underage girls  (Seriously.  He's a 90 year old man hanging out with 16 year olds. Creepy.)

Anyway, while we were busy feeling culturally superior, one of the Twilight moms detached herself and came over - "Aren't you [the kid]'s dad?  I'm [his classroom aide]....  Are you his mom?"  [We thought later it would've been pretty funny if I had not been his mom.  Awkward!]  We chatted for a bit and she asked what he'd had earlier in the week, when he missed Monday & Tuesday.  And my famed social graces kicked in because I suddenly could not remember.  Which child?  Which pathogen?  Which week?  Given my look of confusion, I'm sure she wondered if I really was his mom.  Way to charm the teachers! I hadn't even had a margarita yet.

A pound of guacamole later I was happy and we waddled back to the car to go to the flicks.  But we were in the dark period between all the 7:30 and 10pm shows (the latter of which I'm too old to stay awake for).  Our two options?  The cartoon about the cat... or... yes, that's right... Twilight. 
*sigh*

Also, neither started at the theatre for which I had the Groupon, so full Friday night fare.

I'm sure the rest of the internet has already deconstructed the movie so I'll skip the Edward Bashing.  I was happy with my movie popcorn and icee, sitting next to my aging human spouse, ignoring the Worst Dialogue Ever Written. My darling, mushy husband, raised on John Hughes movies, thought it was kind of sweet.  I have elected to ignore this fatal character flaw.  Because THAT's what grown ups in a real marriage do, Bella.  We don't mock. 

(let's all give Matt a big cheer for being a good sport).

Sick as a Dog, Working like a Dog, & one Dog's Work

My kids are not pukers.  Other than the four glorious months after my daughter arrived in this world and before her heart was fixed, when she was busy projectiling onto our ceilings, I can think of only one other time they've had the vomiting flu (on vacation, naturally).  Nonetheless, I had a tummy ache the Monday after my BBQ race (triggering my fear I'd poisoned our guests), and actually cut out from work a couple hours early.  Then my girl was banned from daycare that Wednesday & we proactively kept her brother home too because he said his stomach hurt but they were both FINE all day and it was a giant non-event. 

Except daaayyyss later, last Sunday, my son got sick right into one of our nice living room throws, which later dissolved into laundry machine clogging Killer Fuzz, so I stayed home from work with them both, again, on Monday (last Monday - I realize my timeline is a mess here).  But again, they were FINE and played all day while I tried not to sulk about my burgeoning inbox.  So we sent him back to school on Tuesday.... where he proceeded to puke in the middle of the lunchroom.  How scarring is that for a kid?  Is this just a rite of passage, this public puking?  It's first grade - I hope they don't start assigning permanent nick-names quite yet.  I'd hate something that rhymes with barfer be his school moniker for the next 7 years.

My current theory about kids, viruses, and work is that there's an inverse ratio between how sick they are, how long they're sick and how much time you spend worrying about your employers whilst tending to them.  Too bad we don't have a fancy graphics person on staff here - just use your imagination. 

     Minor short lived cold?  ~~  Take a vacation day, clean out the fridge, & catch up on the laundry.  Not a big deal.  Who really expects a return call in less than 24 hours anyway?  

     Real illnesses, requiring hospital admission?  ~~ Job?  What job?  Ironically also the time the job steps up, pulls your messages for you AND you get legal cover under FMLA. 

It's the minor lingering ailments that wear on moms and bosses alike.  Which is why I spent yet another Saturday at work again.  Which is also why I feel so very weary.  The most optimistic thought I can muster up right now is "this too shall pass".  Not exactly a great way to start a  full (hopefully) five day work week. 

And only slightly related, in that it tied in nicely with the title and since I'd mentioned food borne illnesses -  I'd pulled a very old costco-sized jar of mayo out of the fridge on one of these recent sick days and then apparently(?) left it on the counter.  [Foreshadowing:  CRITICAL ERROR].  I suppose I was going rinse it out to recycle?  I really don't remember other than marveling at how very long ago its expiration date was and then trying to remember if I'd given it to the kids lately.  I hadn't.  We're not big mayo users which is how we ended up with a very large, almost full, very expired jug o'mayo... sitting out, unguarded, while I put the kids to bed.  I came back downstairs to find a HALF full jar sitting on the stairs, which is where the big dog likes to guard the house.  In the other room I found the lid. With only a couple canine teeth punctures.  He doesn't even need to gnaw it off - my dog can open jars.  We should go on Letterman.  With any luck we won't puke on him.

Chances Are

...it probably really wouldn't be like fen-phen.  But you know I can't pass up a chance for cheap sensationalizing.  By way of explanation, I have my first ever guest post (!) up over at Baxter Sez, which is running a series on the recent NY Times article, A Drug for Down Syndrome.  Click on the blue parts & see what all the fuss is about!

[Also please note the very awesome introduction.  Shucks, I think I might have even blushed!]

Ups and Down(s)

This is more a jumbled mix of events then a cohesive train of thought, and I don't think we're going to land anywhere satisfying, but maybe if I put it to it all to screen someone can pat me on the head nicely, at the end, and tell me it'll all be ok. 
 
We have three appointments for my girl scheduled over the next string of Fridays:  post-op check up with the eye doctor, her first dentist appointment ever, and her three year check up where we'll get a slip for a neck Xray, and more labs to check her thyroid, white blood cells, and a couple other things I can't recall at the moment but googling "blood test down syndrome" sends us down a dark rabbit hole.  And, after listening to her stop breathing for several achingly long seconds the other morning, I'm also going to ask for a sleep study.  And maybe a real hearing test, though I suspect that is more willful toddler-ism than hearing loss, because the girl can hear the fridge open, the dogs' water dish get filled, and her daddy's voice on the answering machine even when she's upstairs and/or otherwise occupied.  [She cannot, oddly, hear me tell her to get down off the fireplace or to not dump said dog bowl.]  At my son's first dentist appointment (at much less than 3 but, among other things, DS caused delayed dentition), they counted his teeth, gave him a toy and a sugar-free lollipop, and sent him on his way. For my daughter's first dentist appointment I have to call her cardiologist for an antibiotic to prevent endocarditis. We will need to do this for every dental appointment, ever, for the rest of her life.

Calling to get that script made me profoundly sad, even if only briefly.  Just one more thing that’s now woven into our lives.  Just as the $1500 in medical bills languishing in our bill box is.  And we're only half way thru her annual out of pocket.  Yeah.

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Then there was this bit on NPR about a new in utero procedure to correct spina bifida.  In the audio version, they noted that back in the day, when spina bifida was diagnosed, moms had the choice of termination or delivering a child with what would be probable special needs.  Now they operate on a six inch long fetus.  I found myself crying while I listened - if only it were that simple. 

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That same week, Alison blogged about reading the comments on an article about the aforementioned New! and Safe! blood test for Down Syndrome.  In my esteemed opinion, reading the comments on ANY news article is an exercise in feeling smarter and saner than the average nut job [commenters on the news being quite distinct from those of my lovable gracious readers], but the people here were exceptionally vicious.  Or maybe I just make a point of not reading them normally.  Particularly galling was this guy who, just to make it cut deeper, managed to write in complete sentences and used "preempt" appropriately (though appears unclear on “release” versus “realize”):

Anyone who claims that their child’s mental or severe physical handicap somehow brings love or inspiration into the world are simply in denial about the negative impact on everyone involved. Back in the day these sorts of children would simply be allowed to die. Medical science then stepped in to prevent that unfortunate fate, but any parent who make excuses about how the born-disabled are so important and special fails to release that after they themselves die a child that cannot take care of him or herself will be a burden on someone (either family or the state) and will more likely than not to have a poor quality of life. Since Medical Science has allowed for these children to actually grow to adulthood, it would be no less unnatural to allow science to preempt the problem completely.

On one hand this is easily dismissed as just one random guy who can't get laid and whose mother didn't give him enough hugs.  But he's not alone.  There are thousands of more comments out there just like it, and probably even more people who believe it, even if they wouldn't express it.  It's hardly worth addressing exactly how wrong they are - especially in this space, read by my daughter's family & friends, & similar parents who are busy loving their little inspirations and don't have time to leave troll-like comments advocating passive infanticide.  I started to, in the role of mommy-advocate, but the process infuriated me.

My discomfort with this piece of garden art from earlier this month was because I suspect Random Commenter & his kind most likely interpret this much differently than I do.  I suspect he quantifies "legitimate reason" as income, job title, or number of patents filed.  Family, friends, Sunday brunch, smooshy hugs, and playing in the kiddie pool while blowing bubbles probably isn't reason enough to justify a life.

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Then of course, this week we had GQ weighing in on Bostonian's fashion sense, writing they suffer "from a kind of Style Down Syndrome, where a little extra ends up ruining everything".  This was well covered in the blogosphere so this is for my family:  read Dr Brian Skoto's response here, and I’m also going to link to Anna's post with explanation, and who also awesomely posted her own funny-pants photo, and to Cate who had the best line - "My kid isn't a cheap punch line". (Which I think I’m going to steal for use during my next office lunch).  I bravely ventured into the comments of the (now revised) GQ article and saw a lot of griping about overly sensitive speech police.  No, bastards, we're just don't think our kids are ruined.  Or punchlines.

I feel zero compulsion to qualify my life but I sometimes wonder if by mentioning our $1500 in medical bills, how much we're paying in life insurance so my daughter won't be a "burden", or my daughter's speech delays, if I might not be contributing to the perception of a "problem".  Maybe I should present thrice-weekly photo-shopped catalogue spreads instead, to sell the up-side harder.  I joke about rainbows & unicorns but I kind of assume y'all know I'm joking, given my normal morose tendencies.  We live in the real world, not in an afterschool movie.  Raising any child is hard - the need to feed and clothe them and make sure they are minded, schooled, entertained, encouraged and grow up not to be sociopaths who leave troll-like comments online is a "burden".  They suck money, time, sleep, and they leave stretch marks and cesarean scars.  My daughter's delays don't bring me love and inspiration, MY DAUGHTER does.  Both my children do.  That we do a little extra for her is natural - we do a little extra for my son too, in different ways.  I would chew off my own arm for either of them.  It's puzzling how few get that.  It's infuriating that I would have to defend it. 

On a brighter note, my adopted home state (gawd, I never thought I'd say that!) just took the nice step of cleaning up their language and will remove the "R___" word from officialdom.

Also, courtesy of Love That Max, not 30 minutes ago, came this (speaking of catalogues):

As if we needed another reason to love Nordy's

In the interest of not making my head explode I'm going to ignore the first part of her post with the potato reference. 
....
Well, I guess I won't...
WHO IN THE FUCK THOUGHT THAT WOULD BE FUNNY?
People suck.

On being prepared.

So my girl really IS sick after all, making us the those parents that took their little viral vector back to day care yesterday to share with others.  Though in our defense, she did.not.stop.moving Thursday while she was home "sick".  To wit:

Matt said her nose was a little runny at drop off but she was still happy & energetic.  She'd been put in daycare time out for, um, GI reasons, not snotty-nose reasons - unrelated, right?  Apparently not.  We got a call at 4:45 yesterday, as I was already in the car heading home, that she was on the floor crying inconsolably.  Nothing like being an hour away from sad-baby to bring on the mommy guilt.  By the time I got her home she just looked miserable and had a slight fever - also, oddly, her eyes were crossing more dramatically than even before her first eye surgery.  From fatigue maybe? 

For some reason, even if this turns out to be nothing, it's left me overwrought and jumpy.  Watching the news of the earthquake and flooding in Japan emphasized how very fragile and tenuous our spot on this planet is.  The earth can literally fall away from under your feet.  Or you can get a cold and land in a hospital with pneumonia (ok, it was RSV, but still...).

There was a line in Alexa Stevenson's book about Minnesota commuters driving home fretting about their job, their marriage, & their shopping lists - right before the I35 bridge collapsed underneath them.  She said that of all the things they were worried about, the bridge probably wasn't one of them.  [Unlikely I got that exactly right, I gave my copy to Mom - apologies to the author].

That line had stayed with me.  No need for Freud or Frasier here - we've had our world fall away more than once.  Brennan was kicking away one night and the next morning at the OB's office he was gone.  Less than three weeks before his due date.  Less than a week before the 'give or take two week' window bracketing that date.  When pregnant with my girl we had a negative quad-screen and not one, not two, but THREE clear ultrasounds - three clear high risk Level II ultrasounds (they were looking for other things).  Not a single soft marker to be found.  I was finally starting to relax (about the pregnancy in general; DS had already been ruled out - ha!) till the extra long fourth ultrasound when they noticed the massive gaping hole in her heart.  Surprise!  And then, most recently, 48 hours of sniffles landed her in the hospital.  So as much as I try to roll with the punches, they keep coming from darkened corners.  I expect to be caught unawares so spend my commute wondering what I haven't thought of yet.  Because if I can put it on the list of horrors considered, then fate's less likely to send that one my way.  Because fate likes to be a sneaky little b----. 

Ironically, I don't consider myself to be either anxious or superstitious.  Or crazy.  As nutty as that last paragraph makes me sound.  Hmmm... How about preemptively & proactively prepared for trauma drama? 

And just so we don't end up on a down note (ha!  Will that ever stop being funny?), here is gratuitous shot of mommy love:

Mirrored Lines

My girl has a funny habit of peering down our shirts.  I have assumed she was noticing the, um, differences between mommy and daddy.  Except over the weekend after a bath I plopped her on the counter to torture her with the Qtips.  She kept pointing at the scar on her chest, looking at her herself in the mirror and running her index finger up and down that line. 

Then she tried to look down my shirt. 

I don't think I can adequately explain that moment.  I froze.  Horror.  And joy.  Horror that they had to crack her chest open in the first place.  Joy that they were able to fix her heart.  Glee, that she noticed the difference, noticed my missing scar.  Sadness, that she'll always bear that mark.  I hope it's a source of pride for her.

I tried to google open heart pediatric surgery to see when it was they started (successfully) operating on babies but, of course, there's no one breakthrough date.  According to Wiki, the first open heart surgery on a child was in 1956 - on a four year old.  It might be pure fantasy, but I imagine it was about the same time they stopped recommending girls like mine be sent away from their families.  Sent away to die alone.  About the same time girls like mine were guaranteed an education.  A year after I was born.  Thirty-some odd years ago and a universe apart.  Good God but we are fortunate. 

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:
PneumoniaPneumoniaPneumonia
PneumoniaPneumoniaPneumonia
PneumoniaPneumoniaPneumonia

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. 

Administrative Update

Girl's cardiology appointment went perfectly yesterday.  I made Matt go (since I'm trying to cram the work hours in) but was then distracted for two hours waiting for A Phone Call.  In a fit of genius, he brought a Signing Times DVD to the appointment so she'd be reasonably cooperative- Yeah Daddy!  They'll see her again next year, but then probably not again for two years thereafter.  Doctor pronounced her repair "perfect". 

Big sigh of relief.  I thinks she's perfectly healthy - she hardly ever gets even a cold* and is ACTIVE (putting that mildly) but I've been blindsided so many times at routine MD visits I get preemptively tense.  Let's call it traumatically induced white coat syndrome. 

*Except for the Great Plague when we went to visit Gigi.  Who hardly ever gets to see her.  GREAT timing for her one serious bug. 

Her eye surgery isn't scheduled till April, though were on the short-call list if there are any cancellations.  The biggest event will be our first Transitional Meeting (I wanted to write that in all caps. I restrained myself) next week.  The school reps will be there too.  She's 2 1/2 years now and will transfer out of First Steps and into the school district when she's 3.  I don't think we really enter the mucky messy emotionally charged (I also wanted to write fraught again.  I think I'll be done with that one for a bit) minefield of IEP issues till she reaches kindergarten age. 

Which reminds me I need to make friends with the lady who accosted Matt at our (inclusive) day care center.  She said she was a teacher there, her adult-ish (?) daughter also has DS and I think her sister/SIL works for the school district.  Or did?  Anyway, she said she's been wanting to meet us and gave Matt her phone number. (No, not like THAT.  Though he is a hottie).  In my new role as Advocate Mom, I will Collect Myself, Pick up The Phone (is the dramatic tension building?) and... invite her out for coffee.  Small steps people.  Small steps. 

Two Years Ago

They fixed our little girl's ticker.

 She kicked butt.

Nothing wrong with her heart.

Almost Two Years Ago...

...the little girl graced us with her presence.  I have almost no pictures from those first months - distracted as we were by hour long bottles, medication schedules, and the miracle & irony of the foxglove blooming in our backyard, but we are profoundly grateful & proud. 

(sorry hon', no daddy photos available).