Brown Butterfly

Image courtesy of the Australian Museum

Brown.  Butterfly.  Brown. Butterfly.

On each of our recent trips to the hospital —I should interject here that nearly all of Nik’s doctors practice in the various affiliated clinics; our trips are not of an emergent nature— Nik has adamantly repeated these two words —sometimes paired together— as we either wait for our appointment to begin or as we are waiting for the valet attendant to bring the car.  (What? They offer free valet parking; I’d be a fool not to use it when I can!)  My poor little guy, has been pressing those little icons on his talker until his fingertips must ache from the effort it takes to try to make himself understood.

Today’s visit was no different.

Brown.  Butterfly.  Brown, brown, brown.  Butterfly. Brown.  Butterfly.

I wracked my brain trying to figure out what he could possibly mean.  Is there a song I sing to him with those words in it? Does he want me to sing it? What song is it?Is he asking me to color? Does he want to go see a butterfly? Oh, Baby, Mama doesn’t understand. Help me understand, okay? His frustration at not being understood was so palpable; my throat ached with unshed tears.

What the hell good does it do to have this fancy speech device if he still can’t tell me what he wants? I felt myself spiraling downward with each digitized utterance.  Brown.  Butterfly.  Brown.  Brown.  Butterfly.  Butterfly. Each word a condemnation of my inability to understand my own child, little razors to my heart.

Knowing he’d been cooped up in the car and so patient during his appointment and the subsequent scheduling of multiple other appointments, I offered Nik a chance to play on the playground before we strapped ourselves in for another hour on the road.  He was excited at the prospect and began to dance what Niksdad and I laughingly refer to as the “excited pony dance.”  Smiling and dancing, we headed for the exit.

SCREEEEEEEEECH! CLOSED?? What do you mean the playground is closed? Turns out it’s been so hot that a child got burned while trying to sit on a swing yesterday so the hospital had to close it until the weather cools off a bit.  Um, yeah.

Hello, autism? Meet thwarted expectations and changed plans.  Let’s just say the next twenty minutes were pretty harrowing and we narrowly avoided a trip to the ER— a short walk through the parking lot.  We made it home in better spirits and had an amazing session with a new-to-us speech therapist (very definitely blog-worthy in a separate post).  The afternoon was smooth sailing.

Fast forward to bed time tonight.  Our evening ritual is very consistent and always involves the use of Nik’s “talker” so he can tell us “Goodnight, please” or something of that nature.  Tonight, as he sat snuggled on his papa’s lap —talker balanced on his slender little legs— I heard one of those damning words again.

Brown, brown, brown.

“You know, honey, he kept saying that at the hospital; I can’t figure out for the life of me what he’s trying to say.” Niksdad looked as baffled as I was.  We both sort of figured it was going to remain an enigma.  Suddenly, a little electronic voice drew back the shroud of mystery:

Play. Brown.  Play. Brown.

“OH. MY.GOD! Of course!!!!! How could I not understand!” My husband looked at me like I had three heads.  “Honey, did you hear that?  Do you get it now?” Niksdad looked at me blankly.  I pressed the talk section of the device (which then repeats the whole phrase that’s been entered).  Nope, still blank.

I sighed and said “Put one finger in your ear and imagine what Nik might hear” and I pressed the buttons again. Play. Brown.  Play. Brown. “It’s playground! He’s been trying to tell me PLAY-GROUND!  Brown must sound like ground to him.”

Nik smiled beatifically as my heart flipped in my chest.  Slightly weepy but exhilarated, we carried our sleepy boy up to bed.  As we came back downstairs to the playroom, it struck me: BUTTERFLY! OF COURSE!

“Honey, do you say a particular phrase to Nik when you go to the park? Like “Do you want to slide?” Niksdad said “Sometimes.  Or I’ll ask if he wants to climb. Why?”

Go ahead, put your finger in one ear and then say the phrase “want to slide” or “want to climb” with a moderately elided pronunciation.  Imagine what it might sound like to a child with, perhaps, moderately impaired hearing.  Do you hear it?

As magical as the beating of a butterfly’s wings.

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In which I reintroduce myself to my blog

Um, hi.  Yeah, I know I’ve been AWOL for a while.  I’m not even going to try to relate everything that’s gone on in our lives since my last post.  Well, okay, for the benefit of the fourteen faithful readers who keep checking back for posts, I’ll try.

• Nik’s been making amazing progress with his “talker” (speech device).

• Nik’s made tremendous gains in eating “real” food.  Turkey sandwiches, chicken, spinach (!!) and the like.

• We’ve hit upon something we think might be at the root of  Nik’s gawdawful gastric troubles.  But it’s complicated and difficult to explain.  It’s still a work-in-progress so I’m not ready to write about it yet, sorry.  If we’re right, it just might help us all sleep again!

• Nik’s been battling rampant ear infections…again.  On and off since Memorial Day.  We see the ENT (again!) tomorrow to discuss removal of yet another tube and whether or not to replace them…again.

• Nik’s getting over his sensory issue with sand in a major way. As in we-may-be-hitting-the-beach-this-summer kind of major way. (Insert quiet, hopeful SQUEEEEEEE!)

• Nik’s learning to play in my sister’s pool without his swim vest.  As long as he has his arm floats, he does just fine. He can now doggie paddle the length of the pool a couple of times over. The boy adores the water, for sure! Nearly every day the first words out of his talker are “Go swimming. Cool.”  Yes, we’ve figured it out; he really does say cool when he means pool.  Sometimes he’ll even voice the “puh” before touching the button for cool. It’s adorable. And annoying.  But mostly adorable.

• Sadly, the relationship between Nik’s ear infections and lots of swimming? Pretty much a one-to-one correlation. Which, no surprise, also correlates directly to broken sleep. GAH! With this latest heat wave, we’re willing to forego some sleep in order to satisfy the boy’s pool cravings.

• And, last but most definitely not least, Nik has returned to school.  Today was his first (part) day.  This topic merits a separate post for so many reasons.  For now, though, suffice to say it’s not a perfect situation but it’s so much better than we could have anticipated.  Where we once felt sick and hopeless about the idea of putting Nik back in school, there’s now a glimmer of hope.  It may be elusive— like that pot of gold at the end of the rainbow— but we’re going to chase after it with all we’ve got.

We’re ready, Nik’s ready.  I hope school’s ready for him!

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A real stand-up guy

My son is a wise-ass, erm,  comedian.

Overheard in the playroom early this morning…

Me: Good morning, Lovey-bear! Can you tell Mama “Good morning?”
Nik: (using his “talker”) Yes.
Me: Um, honey, can you use your talker to SAY, “Good morning?”
Nik: Yes.

Excitedly, Nik starts to reach for his talker as if he’s going to comply with my request for a greeting.

Nik:  Go swimming please. Swimming cool* please.

I swear, Rodney Dangerfield had nuthin’ on me.

[We think Nik is saying cool where he means to say pool. It's awfully endearing.  Until one hears it all.day.long!]

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Reinvention

Who am I?

Before my son was born, I had a career.  It wasn’t a stellar, glamorous career but it was steady work doing something I’m good at, something for which I was appreciated and valued and which gave me a certain measure of latitude in my days and weeks.  When I became pregnant, I was a very high-risk patient due to my age and my reproductive history of miscarriages and infertility.  I was put on “modified rest” and highly restricted activity —definitely no thirteen hour days commuting into the city, managing the stressful details of running an office and juggling the demands of multiple executives.  Through my entire first trimester, I managed to stay in contact with my office and keep things running as best as I could through conference calls and emails.

At the end of my first trimester, my new obstetrician gave me the thumbs up to return to work.  I was relieved and felt a renewed sense of purpose each day.  My plan was to return to work just a few months after the baby was born.  Life, as it turns out, had other plans for me.

Nik was born at twenty-seven weeks.  Because of a previously unknown uterine anomaly, his growth had been restricted and he was the size of a 23 or 24 week fetus.  He weighed in at a whopping 530 grams at birth —including the breathing tube and apparatus to hold it onto his impossibly tiny face.  One pound, two and five-eighths ounces of determined fighter.  He turned my world upside down in ways I haven’t even begun to identify!

Two hundred nine days in the NICU, countless operations and ongoing interventions.  It became glaringly clear that my work days were over for the foreseeable future.  Nik’s needs were too great and the cost of childcare too steep.  My fulltime job became “mom”; my new boss had me wrapped around his little finger.  Somewhere along the line, I just assumed that I would return to the work force eventually —once Nik was “healthier” or when he went to school.  My husband and I had discussed the fact that we probably couldn’t survive for long on just one income.

Fast forward six years.  Many twists and turns in our journey have led us to a new home, a new career for my husband —who is about to return to school to advance that career further— and the unexpected decision to home school our son.  His needs are still very great and the cost of specialty care is prohibitive.  We cannot afford a private school but I am no longer able to juggle the constant demands of his safety and education with running a household, being a wife, being a mother and trying to make it all work.  Something has to give.

That something, historically, has been me.  Tonight, as my husband and I discussed the next stage in his career development, it finally hit me; I’m not ever going back to work in the way I once imagined.  My husband’s school program will take another two to two and a half years at which point I will be nearly fifty.  Ten years out of the work world.  Ten years out of the loop of, well, everything that doesn’t somehow revolve around parenting a child with multiple disabilities or being a wife.  Make no mistake, I do not devalue those things at all —they are a vital part of who I am.

However, tonight, it felt like the paradigm of my future that I’ve held for so long simply vanished in a puff of smoke.  I am left feeling lost.  Who am I? What will I do?  Who do I want to be outside of my roles as wife and mother?  Is this all there is?

I don’t have any answers yet; I suspect I won’t for a long while.  But I do know that I need a plan for my here-and-now to make sure that something anchors me, fills me up.  Something gives me a sense of self outside my family, a sense of purpose.  Something to look forward to that is just for me.

They say necessity is the mother of invention.  I say reinvention is the necessity of motherhood.

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Mercurial and ever-changing Autism

“Never say never, for if you live long enough, chances are you will not be able to abide by its restrictions. Never is a long, undependable time, and life is too full of rich possibilities to have restrictions placed upon it.”

~ Gloria Swanson

 

When my son was about three years old, we spent the night in the hospital for a video-monitored EEG.  The EEG was actually ancillary to the reason we were in the hospital in the first place as he had been very ill with some sort of gastroenteritis and was very dehydrated to the point of needing intravenous fluids.  This was not our first hospital stay; my son was born extremely prematurely ans spent the first 209 days in the neonatal intensive care unit (NICU).  He has gone through more surgical procedures than most people endure in a very long lifetime.  Thus, he is no stranger to the invasive procedures inherent in a hospital stay.  He is also a trooper, putting up with things most of us would whine about.

On this particular stay, he suffered the indignities of being swaddled into a papoose board to allow the EEG technicians greater access and cooperation for placing the leads.  If you’ve ever had an EEG, you know the leads are numerous and the goop used to hold them in place is sticky.  A twenty-four hour EEG in the hospital is worse; the leads are held in place with the medical equivalent of model airplane glue which is dried with a hair dryer.  Did I mention, there’s somewhere in the neighborhood of twenty electrodes or more used for an EEG.  Did I also mention that my son hates to be restrained in any way?

My poor boy fought so hard that he actually got a hand free from the swaddling —ripping out an IV line in the process.  He never said a word through it all.  (Why would he?  He’s nonverbal.)  He kicked and screamed to bring the house down but he never said a word.

The following morning, my indignant child —who also was unable to stand on his own at this point in time— badly needed a bath.  His hair looked like it had been styled with an egg beater and glue and there were smears of dried blood on his arms and torso.  One of the very kind nurses offered to let us use the bathtub in the therapy room because it was big enough if I needed to get in with my son; it was our first time ever trying a bath in a real tub.  Nik was small enough that we were still using an infant tub at home for the convenience and security; his trunk control wasn’t strong then and we feared he might topple over in a regular tub so we’d simply never tried.  Despite the larger tub, I was fairly confident that this would be a simple enough procedure as my boy always loved bath time.

Never was a mother’s intuition more wrong than that morning.  The moment I placed my naked, filthy child in the tub —just to let him feel how it was different from his tub at home (and with no water in it yet)— he catapulted himself  to  a standing position holding on to the side of the tub and said screamed the first and only word I had ever heard him utter. “NO!”  The nurse chuckled and said “I thought you said he doesn’t talk.”  “He doesn’t,” I stammered.  We spent the next hour trying to calm him and clean him up as best we could before heading home. 

* * * * * *

Time is a great equalizer and many things have come to pass which we never thought we’d see.  My son began walking shortly before his fourth birthday.  In the blink of an eye, Nik seemed to go from a non-ambulatory child to the fastest of runners and most agile of climbers.  He even learned to love the water again by spending countless hours in my sister’s swimming pool over the intervening summers— many of those hours spent screaming and clinging to me or Niksdad.  He’s even learned to like baths once more and would be happy to play in the water long after it’s turned cold and his fingers and toes have gone wrinkly.

But, seriously?  Nothing could have prepared me for yesterday.

* * * * * *

It was an unseasonably warm day filled with tremendous noise and disruption which kept Nik off-kilter all day.  A crew was working to replace the roof on our home; it was noisy and the house had been tented to protect it from the debris being ripped off the roof.  Nik’s usually quiet, bright play area was anything but.  Despite it all, Nik seemed pretty sanguine about it all— at first.  As the day wore on, we could sense the tension in our son though we would have been hard pressed to identify anything more specific.

  Niksdad spirited Nik away for some quiet time at the park.  Despite Nik’s apparent imperviousness to all the noise, we could tell the disruption was taking a toll by the way he was perseverating on specific things which he hasn’t for a long time.  It was definitely time for a getaway! 

Despite falling asleep in the car on the trip home from the park, Nik was in better spirits when they returned.  He was also badly in need of a bath.  My husband removed Nik’s shoes and orthotics in preparation for “the b-word.”  “Are you ready to go take a bath, little buddy?” Nik squealed (nearly a shriek!) and began to dance in place like an excited pony.  Then, he bolted from the room, making a beeline for the stairs.  He paused just long enough to grab his daddy’s hand to pull him along.  My six-foot-one husband had a hard time keeping up.

It was one of those rare moments when so many things come together in an instant, so many skills taken for granted:

* comprehending the question
* motor planning and coordination
* desire to share the experience (of the bath)
* recognition of that desire
* appropriate interaction to request company
* expressing emotion appropriate to the situation

I wish I’d had my video camera at the ready.  Instead, all I could do was laugh. 

And marvel.

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No foolin!

[Author's note:  This is not an April Fool's joke.  These events really happened in my home. Today.]

Nik slept through most of the night; he woke for about an hour at 11:00 p.m. last night, asked for his book and had a temper tantrum when he did not receive it. (Tough luck, kiddo.)  I feel compelled to add that Niksdad and I lay in bed chortling with glee at both the impressive display of vocal histrionics coming through the monitor and the fact that this behavior was so, well, normal.

Nik went back to sleep around midnight and proceeded to sleep straight through until 8:15 this morning.  No, that’s not a typo.  In fact, we’ve had a few of those kinds of nights in a row now.  I haven’t mentioned it for fear of incurring the wrath of the sleep gods, but I honestly wonder if we’re turning a corner. 

To say the benefits of good sleep are plentiful would be a gross understatement.  Nik’s been eating better, playing more happily, cooperating more readily (swoon).  The leaps he’s making in communication have just blown us away.

Today, Nik managed to get his pants on and pulled up all by himself.  That alone is a herculean task for a child who has poor fine motor control, serious attention wanderings, and who won’t generally use both hands at the same time.  Oh, and he had to put down his beloved letters in order to do so.  HUGE.

Many of you know that we recently got Nik’s speech-generating device.  It’s been challenging to figure out how to tell you more about it since I am still learning “best practices” for implementing it and teaching Nik how to access what he wants to say.  It’s somewhat akin to giving a brand new reader the entire Encyclopedia Britannica and asking them to find the section on aardvarks. Overwhelming.

Nik —being, well, Nik— seems to have already figured out some of it for himself.  Just this morning he wandered over to his “green box of words”, turned it on by himself and proceeded to touch all the food choices to let me know he was ready for breakfast!  Granted, we had a few months’ worth of trials with a loaner so this is not completely new to us,  but Nik has been exploring and finding new words and trying them on for size.  I give him feedback for each word, trying to help him see that it’s not just a sound. 

Nik is discovering the power of communication.  He’s also realizing that it’s a reciprocal activity requiring a partner.  If I leave his device turned on and accessible to him while he’s playing, Nik shows little to no interest in exploring, unless he has something to say.  He already recognizes that this magical box is not a toy.

Ha! As I was writing the above paragraph? Nik turned on his device and told me he was hungry.  Using the actual word “hungry.”

The boy is voracious —not just for food.  He’s on a quest to learn all about the world around him and how to be in it, how to master skills to build on.  He wants to be with people and be social—he just needs our help in learning how to do that.  He has so much going on inside his beautiful head but doesn’t know how to get it out there.  That’s my job —to help him find his voice.  To empower him to tell us who he is, how he feels, what he thinks.

Our shared responsibility —yes, yours and mine? To listen when he communicates, to honor what he feels.  To nurture the potential he already knows is there.

April is Autism Awareness Month.

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Wrapped around his finger

I should know better than to not plan and pack things the night before for a morning trip to the hospital for any of Nik’s specialist appointments.  I always end up shooting myself in the foot by trying to cram it all in into too little time in the morning and end up losing my cool with Nik for his lack of cooperation.  Yeah, I know. Um, hello autism.

And yet, in my sleep and caffeine-deprived state, I lose my ability to think, to remember that he’s wired to have to complete putting all fifty-two of his letters in his blue bucket (both upper and lower case letters) on the other side of the kitchen gate before we can change his pull-up and get him dressed.  I forget that he cannot function until he has his tattered and chewed —decimated, really— letter N clutched in his fist or that he simply has to listen to a certain song from his Rainbow Fish LeapPad book before he’ll take his medicine.  Some days we manage to get it all done in the right sequence and in  relatively good time.

Today was not one of those and it ended in tears.  Mine.  I yelled at Nik pretty good (bad?) this morning and it scared him.  When I was putting him in his car seat before leaving for our appointment, he actually flinched when I reached for him.  I felt like the worst mother, the scariest monster in that moment;  We sat in the driveway as I sobbed and silently cursed both myself and Nik’s autism. 

We went on about our morning, including the 104 mile round-trip to the hospital for our appointment with one of his specialists.  Nothing new or exciting, just a routine follow-up.  We ate lunch in the hospital because my growing boy can’t go more than two hours without eating these days, apparently. 

He sat in a regular chair with no booster and I didn’t even have to tell him once to sit down. (I’ll pause a moment to let that sink in.)

On the drive home we shared a cookie from the coffee shop. Yeah, I know, it wasn’t gluten-free but we didn’t care; we’d both had a challenging morning and, well, Nik kept asking me for a cookie all morning —so I caved. 

Rolling down the highway in the pouring rain, I reached back to hand Nik a piece of the cookie.  I felt him take it from my palm with one hand and then he wrapped his other hand around my fingers in a tender grasp.  No seeking, no grabbing, no distress.  Just pure connection.  Love.

With his tiny fingers wrapped around mine, he gave me absolution.

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Ready for takeoff

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Spin cycle

He presses his tear-stained cheek against my chest, wedging the top of his head with its slightly damp hair under my chin.  His delicate fingers toy gently with the drawstring on my sweat jacket; the repetitive motion gives him a focus for his restless energy. Drawing his legs up tightly, he takes my arm and wraps it around them.  The pressure of being hugged so firmly provides him with the input he needs to be able to calm himself again.

With my left hand resting on his cheek, I begin to stroke behind his ear.  I can feel his body gently easing out of fight-mode as his breathing becomes more even.  I look down at his sweet face in the dim glow of the night-light; his eyes look up into mine, pleading.  Begging me to make the pattern cease once and for all.

Thus, does my heart break each night at seven-thirty.

It is so difficult for me to reconcile this frantic, frightened child with my sweet boy who once slept like a rock each night.  He would practically dive into his crib, pushing me away as I leaned over to stroke his cheek or to sneak in an extra kiss goodnight.  Now, it is I who sometimes withdraws as he begins to wail and moan, clutching and clawing at my hands.  Begging me not to leave him in the semi-darkness with whatever demons —physical or emotional, real or imagined— he battles but has not the words to tell me about. 

What damage is not inflicted by his grasping hands is more than made up for by the guilt in my heart as I close the door on his cries.

Thus, does my heart break each night at seven-thirty.

I feel his body become limp and heavy in my embrace.  And I wait for what seems like an eternity until I am sure he’s sleeping soundly enough that I can put him in his crib.  While I wait, I look at the slender fist curled around the drawstring.  As I gently disentangle his fingers, I cannot reconcile the soft hand in mine with the fists which strike out at his face in the middle of the night.

And yet, the evidence is writ upon his face in a tapestry of scratches and bruises in varying hues of purple, black, blue, green and yellow.  Bruises on top of bruises. Scabs on top of scars from the breakdown of his skin each time he jams his face hard into the corner of the crib, the fabric of the protective tent leaving burn marks on his forehead from the pressure.

Thus, does my heart break each night at seven-thirty.

Most nights I am not successful at transferring his ever-lengthening body into bed without waking him.  The clutching and clawing begins anew, accompanied by a plaintive, exhausted wail.  I reach into the crib and place one hand on his head, gently stroking near his ear as I firmly place the other one on his bottom and gently rock him side to side.  Sometimes, I merely hold him and whisper a soft, repetitive shushing sound.  If I’m lucky, I can get him to sleep again in a matter of minutes.

The pattern is nearly always the same no matter how many times he wakes in the middle of the night.  The moans and wails turn into shrieks of terror or pain.  I know not which.  The fists begin to fly and his legs kick against the side of the crib with enough force that I fear he will, eventually, break the slats.  By the time I am able to reach his side, he is in full-blown panic.  Adrenaline pumping, spittle flying as he pummels his face and pokes at his eyes and forehead.  Even the sound of my shushing voice and my hands, desperately trying to contain the damage he’s inflicting, are not enough to calm his frenzy.

If I can sit him up and put the side of the crib down, I can wrap my arms around him, gently trapping his flailing limbs as I croon soothing sounds into his ear.  Eventually, the sobs subside and he simply sits and holds my hands in the darkness as his body shudders with each ragged breath.

Thus, does my heart break each night in the middle of the night.

He lets me lay him down and put my hands on his head and bottom.  The familiar pressure and warmth of my hands seem to soothe him a bit.  The familiarity of the hold unnerves me slightly; it transports me back to our days in the NICU.  Nik was so fragile that, for months of our two hundred nine-day sojourn, all I could do was gently touch the top of his head and the soles of his feet; anything else was too stimulating, too much for his delicate, underdeveloped body to tolerate.

The memories unleash a torrent of grief —like a flash flood moving swiftly and then gone again.  I am able to keep the grief at bay most days; there is so much more which demands my attention during waking hours.  Here, in the darkness, there is nothing else to occupy my mind and the tears run freely, falling in scalding drops on my arms and hands.  Drawing in a shaky breath, I stem the flow and resume my gentle shushing.

Often, he will not go back to sleep but is content to sing and coo to himself for a bit until he eventually succumbs to the exhaustion and falls into fitful sleep.  I stumble to my bed and sink into sleep until the next wave washes over us and the ritual begins again.

Thus, does my heart break each night in cycles.

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Obstruction

I don’t know if I should be comforted or frustrated by the knowledge that my instincts were right about the ENT.  As Murphy’s Law would have it, Nik’s ear looked great and his tonsils seemed fine when the doctor got a good look.  Well, hell, I’m not a doctor but I’m pretty sure that even I know that a week on heavy-hitting antibiotics might have some slight ameliorating effects.

The bottom line is that the doctor doesn’t think the tonsils are the problem and doesn’t want to remove them; he said he thinks it won’t give us the results we are hoping for and may make Nik’s oral motor issues worse.  Now, here’s where the good doctor and I part company because I’m pretty sure he’s looking at this strictly from his little ENT-corner-of-the-world view while I am looking at the big picture.

To whit:  Nik has a significant history of both cardiac and pulmonary disease or insult.  He was a history of Failure to Thrive (FTT) and is still in the third percentile for both height and weight for his age with a body mass index of less than fifty percent.  This child who used to sleep ten to thirteen hours per night without incident has not slept well in three years; the average amount of sleep Nik now gets is eight hours total —broken into three, sometimes four, segments.  His longest stretch of sleep these days is about three hours.

My once placid and even-tempered child is now a whirling dervish with a recent diagnosis of ADHD.  I’m not sure I buy that, really.  Not as long as there may be any underlying pathology which may be treatable.  And the long-term cost of doing nothing but medicating it and hoping it resolves itself is too great.  The threat to Nik’s overall health and development is not insignificant; the toll on our family as a unit is beginning to show.

I’ve already got calls in to our fabulous pediatrician; I know I can count on her to go to bat for us if we need to be referred outside our state for a second opinion.  Yes, one drawback to living in a small state is that all the pediatric otolaryngologists practice in the same facility.  Apparently, they also all share one opinion among themselves depending on who’s on the schedule.  But I digress.

Nik’s insurance demands that we exhaust all possibilities before they will deign to authorize an out-of-area office visit.  That means our next step is requesting a sleep study.  Call me jaded but I like to think of it as a sleepless study; let’s face it, there’s no way anyone can sleep “normally” when they’re in a hospital and wired to all sorts of machines —especially gadget boy Nik.  But it’s one of the hoops we have to jump through before we can make any real progress.

Stay tuned…

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