How Old is Hallie?

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How Old is Lea?

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Wednesday, October 27, 2010

Let them eat...bread?

Hallie, Lea and I were wandering through Wholefoods, also known as the snack emporium, the other day.  As she typically does, Hallie requested some bread.  I reached over to get a packet of sliced whole wheat sandwich bread (which is one of Hallie's staples) but Hallie expressed her preference for a "long one."  I figured that she'd break off a piece and nibble on it while we did our shopping.

Apparently Hallie preferred the corn on the cob treatment...

Saturday, October 23, 2010

Expressing Feelings

Last week, Hallie came down with her first cold of the season--you know, the kind you pick up from hanging out with a million other kids at preschool who are leaking snot (and a few who apparently have contracted pertussis).  Sharon and I were crossing our fingers (and leaving little white marks and dents in our hands) that this seemingly run of the mill cold (which affected all of us, but Hallie worse than the rest) would not morph into pneumonia, as all of Hallie's colds have for the past year.  We were religious about keeping up with Hallie's breathing treatments (Hallie actually started to request her 'puffers' whenever she was having problems breathing), monitored Hallie's temperature very carefully, counted her respiratory rate on a regular basis, and made sure to take heed of any sign that Hallie was in pain. (We are still kicking ourselves for not having paid attention to Hallie's complaints last December/January that her back was hurting since we might have been able to avoid hospitalization for that first very bad pneumonia had we only realized her lungs were inflamed a little earlier than we did).

Anyway, we were a bit on edge, but everyone pulled through and her cold is apparently getting better right on schedule (that is, 7 to 10 days after she first exhibited symptoms of it).  So, between our vigilance and a booster shot against pneumonia, we're out the other end of this thing.

Of course, no cold around here is complete unless it is accompanied by some vomiting.  Vomiting has turned into a quite rare event for Hallie (I think we can still count the number of times she's upchucked this year on 3 hands, but honestly one indication that she's not vomiting anymore is that I'm not counting the times she does anymore, either).  Since we don't really expect Hallie to hurl, we're a bit out of practice when she does.  This became a bit of a problem last Saturday when I went to lie down next to Hallie because I did not like the way she was coughing (horrible deep coughs in her sleep with an alarming rate of frequency).  Not long after I decided that I needed to be closer to her, she had an uncontrollable coughing fit and one thing led to another.   I quickly found myself trying to locate the bucket that still resides under the bed in the hopes of catching the inevitable return of dinner but was just a moment too late.

So we found ourselves lifting a soiled and upset half asleep little girl out of bed; stripping off her shirt; changing out the sheets, pillowcases, and comforter cover; and removing her beloved green fleece froggy blanket.  I quickly threw everything in the wash and we got new linens on the bed and Hallie back in it within a few minutes. 

Hallie slept in on Sunday and was not quite herself.  She seemed a bit sullen and subdued, but who wouldn't be given that she was nursing a cold and had had her sleep interrupted?  Sharon decided to download a few movies for Hallie from Netflix and we sat around watching them with her.

One of the movies Hallie chose was The Adventures of Elmo in Grouchland, which is one of our friend Taylor's favorite flicks.  Hallie hasn't really watched Sesame Street in over a year now, but she and Lea (who doesn't really watch Sesame Street at all, but who somehow knew how to identify Elmo from the moment she was born) like Elmo a lot.  Hallie has long known the songs featured in this film since we have a DVD of them (and used to use that DVD as an incentive to get her to eat), so we figured this would be a good choice of films that would appeal to both of our kids. 

The plot line of the film involves Elmo losing his blanket in Oscar's trash can (after refusing to share it with his best monster buddy, Zoe), and then having an evil villain (nicely played by Mandy Patinkin) snatch the blanket and refuse to give it back.  Elmo valiantly tries to retrieve his blankie and faces down creatures like a giant chicken (clearly Big Bird's evil alter ego) who attempt to eat him and (spoiler alert) finally prevails and all is set right when Elmo learns to share.  In other words, the plot had an easy story line with a good moral lesson to it, and a whole bunch of song-and-dance routines and some scary bits mixed in to keep the whole thing suspenseful.

Now, it's never clear to us what or how much narrative plot line Hallie comprehends.  Hallie is very, very bright and knows thousands of words and concepts; loves to analogize; and is extremely curious about the things that surround her in the universe.  She always wants to know what things are called and she likes to categorize stuff (shapes, animals, machines, colors, etc).  She wants to know the names of people and not just of stuff (watching baseball with her is a bit of a challenge because I cannot always identify the players for those annoying teams that don't have last names emblazoned on the back of their jerseys...yes, New York Yankees, I am talking to you!).  And once you tell her the name of an object, animate or inanimate, she will know it forever and ask you to quiz her on it (every time Jayson Werth comes up to the plate, Hallie turns to me and asks "what's his name?" and then I'll respond with "what's his name, Hallie?" and she'll retort:  "That's Jayson!")

But despite this quirky knowledge base and her curiosity about the universe, Hallie still has trouble following along with the narrative development of a story.  Even though we're constantly acting out the three little pigs, Hallie hasn't mastered the lesson that pigs should take care to build houses well (and not out of straw and sticks because they want to play) if they are to stave off the advances of wolves with good lung capacity.  The big bad wolf is neither big nor bad in our world:  he plays with the pigs and he romps with Little Red and appears to have forgotten entirely about his mission to make a tasty dinner of bacon with a side of granny. 

On the one hand, it's comforting to think that Hallie's universe is not complicated by questions as to why so many children's tales are so ominous and foreboding (if you want an answer, read the fabulous essay on Mother Goose tales by French cultural historian Robert Darnton in this book).  Nevertheless, it is simultaneously also somewhat disturbing to us that, on some fundamental level, the complexities of human emotions and social relationships in all of their complexity (even when rendered by monsters and animals) seem to elude Hallie.  We don't know what she thinks or feels about these things because she doesn't really tell us.  She has learned to look for clues about sadness (overt crying) or happiness (smiling and laughing) and can respond accordingly -- sometimes this is spontaneous (she'll notice Lea is crying and offer her a band-aid or even a hug) and sometimes prompted (she won't notice the crying and has to be cued to look at Lea, see what she's doing, and try to figure out why she is doing it).  But she never asks why Lea is crying (even when something Hallie has done has made Lea cry) or whether Lea wants a hug or a band-aid.  She just accepts it for what it is, responds in a fairly narrowly scripted way, and moves on.  Likewise, even when Hallie is clearly upset about something or feeling ill, if we ask her, "Hallie, how do you feel?" she will respond on the vast majority of occasions with "I feel happy!"  She clearly is not happy, but she expects that this is the right response and gives it to us as a result.  It's hard (read:  impossible) to manage to figure out how to teach a child about causality and consequences (which are higher order thought processes) under this set of circumstances.  The whys and the becauses elude Hallie (which is why we have only heard Hallie ask why exactly once in her life).

All of this brings me back to Elmo and the tale of his stolen blankie.   When Hallie watched the film, she got visibly upset and began to cry.   At first we weren't sure why.  But then Hallie told us why:  in somewhat labored (it involved some stammering) but completely spontaneous language, she told us that Elmo felt sad because her blankie was gone.  At first we were confused.  Hallie has pretty atypically typical pronoun confusion (the genders elude her entirely and most of the time her choice of pronouns seems to be guided by uneducated guesses), so we thought she was somehow confusing 'he' and 'she' and assigning the wrong pronoun to Elmo.  But she wasn't.  A few minutes later she clarified the situation for us:  she was upset because Elmo lost his blankie, and she empathized with Elmo because she had also lost her blankie (I played the villain who snatched it in real life) and she wanted them both to get their blankets back. 

Alas, Hallie's needed a second cycle in the dryer, so the little red monster got his back first, but I made sure that I did everything I could to return Hallie's to her as quickly as possible.

We're never sure around here whether this is indicative of an imminent breakthrough in terms of Hallie's comprehension, capacity for empathy, and social skills or whether this is one of those one-off events (like the sole why we heard eight months ago).  But it is heartening to know that she is beginning to make connections around feelings, and not just categorizing stuff. 

Monday, October 11, 2010


Hallie is extremely fond of a good metaphor.  Here are just two recent examples:  Papers fluttering in the breeze "look just like leaves on the tree."  The argyles on her socks this morning "look like diamonds; they are just like the kites flying in the sky."  So I suppose that we should not have been surprised when she came out with the following the other night:

Hallie and Sharon were in the bathroom for pre-bedtime hanging out on the potty.  Hallie let out a very loud fart and exclaimed, concerning the constipation that apparently was the underlying cause of this:  "Mommy, there's a traffic jam in my tushie!"  We found this hilarious and quite clever.  And also promise to delete this post from our blog before it can become a source of embarrassment to our poor kiddo. 


On an unrelated matter, Hallie apparently has apparently embraced the roles that Sharon and I have carved out for ourselves (by design or by necessity).  The other morning, Hallie was talking about an upcoming visit with friends and family (loosely based on a melding of a real impending outing with an imagined one fashioned after an episode of Mickey Mouse's Clubhouse).  She was describing how she'd be taking a choo-choo train and said, "I'll sit next to Hannah and Adam and right near my friends Eliza and Taylor.  Mommy will be in the diamond car."  I innocently inquired:  "where is Mama going to sit, Hallie."  Hallie pointed to me and stated, emphatically:  "You're staying here Mama.  You'll be in the kitchen, cooking."   I guess she notices that I do all the cooking around here, no?  Given Hallie's relationship to food, however, I am not sure whether this is a compliment or an insult.


The outing that we went on, to a local farm/orchard/pumpkin patch, was organized by our friend Anne, mom to the one and only Eliza Grace.

The farm hosted a small array of barnyard animals, a wagon ride around the stable, some toy tractors and John Deere trikes that the kids could toodle around on in the yard, pumpkins to pick and to decorate, and pony rides.  Our kids loved the animals the most and Lea was thrilled to have a chance to ride the horsies.  They also got into painting their pumpkins and listening and dancing to the band.

Halloween has long been one of Hallie's favorite holidays.  I'm not sure if it's the dress-up aspect (she loves clothing adorned with witches, and pumpkins, and ghosts, etc, as well as full-on costumes), the controlled spookiness of it all (Hallie has been talking about goblins and other scary creatures of late), or just the chocolate (the kid does love her chocolate, but only the plain stuff).   Or maybe it's the fact that she came home from the hospital ten days before Halloween and this is the first holiday of the year that she spent with us?  Who knows.  Whatever it is, it's great fun to see her so happy.  And since Hallie's happiness is infectious, we all end up smiling a lot this time of year, too.

Hallie astride the biggest pony at the farm:

Hallie and Lea dancing around and being silly.

Lea taking her turn on the pony.

Me giving Eliza Grace a ride.

 She also rode a pony and looked good doing it.
And of course the kids had fun clamoring on a miniature John Deere tractor.

A great time was had by all.  Unfortunately, Hallie did develop the sniffles by late in the afternoon.  In retrospect, she appears to have been developing a cold all week (hopefully not a result of the flumist.  Now that she had her bout of pneumonias, I do think it's time to return to the conventional flu shot instead).  But she began to seem run down by late in the day yesterday and has gotten worse throughout the day today.  By tonight she was running a fever of close to 101 degrees.  We're hoping that preemptive flovent and albuterol will keep the junk out of her lungs.  Please cross your fingers on this one since we really cannot (or at least do not wish to) return to the cycle of pneumonias that plagued our kiddo for the better part of last winter and spring.

Friday, October 8, 2010

Doctor No or the Hunt for the RedOctober

These sound like Cold War era movie titles, but they're not. Indeed, unless you believe the Soviet era propaganda that claimed that the Russians invented baseball, or are a historian of the Red Scare in the US and know that the Cincinnati Reds briefly renamed themselves the Cincinnati Red Legs during the McCarthy Era so as to be avoid being mistaken for Bolsheviks (and consequently hauled in to testify en masse before the House UnAmerican Committee), there is really little in the way of a connection between my professional life as a Russian historian and my hobby as a baseball, and more specifically, Phillies enthusiast. Which brings me to the real subject at hand:

On a complete whim and in an uncharacteristic act of spontaneity, Sharon and I decided to go to the first game of the NLDS in which our beloved "Baseball Phillies" (as Hallie likes to call them) were playing the Cincinnati Reds.  I had entered a lottery for a chance to win the right to purchase tickets for the post-season and sadly had not been chosen the first time around.  But the second time is the charm; at 3pm on Tuesday I had a five-hour window of opportunity to snatch up a couple of tickets to the big game, which was to be Roy Halladay's debut in the post-season.  A few well-placed babysitting calls later and the deal was sealed.

Boy was that a great idea.  As a historian, I really appreciate the fact that we got to witness a fabulous part of baseball history:  Halladay pitched only the second ever no-hitter in the post-season and the first one since Don Larsen pitched a no-hitter for the Yankees in their victory against the Brooklyn Dodgers on October 8, 1956 in one of their many "Subway Series" that decade.

No doubt my dad had money on that game; my dad lived in Brooklyn --which is where I am from, too--and was one of the few stalwart Yankees fans in that borough.  He bet on the Series against his friend Henry during the formidable run that the two teams had against one another -- the two teams met up seven times during the period that spanned 1941 and 1956.  The Dodgers lost all but one of those contests--the one held in 1955, which was also the only one in which my dad, taking pity on poor Henry, opted to put his money on the Dodgers. When the Dodgers managed to pull off a hard-earned win in game 7, Henry responded by tossing my dad's radio out the window.  No passersby were wounded and I can only assume that my dad spent his earnings on a replacement for it.

Anyway, I digress.   Sharon and I managed to get out to the stadium and to our seats just before the first pitch of the game, which was one of many strikes (79 to be exact, of a total of 104 pitches).  The seats themselves, which were located along the third base line, were none too shoddy; at first I was covetous of those sitting closer down toward the field but that was before the rain started and I realized that we were protected by an overhang.  The two of us settled in to watch the game and Sharon kept poking me every now and then and uttering something along the lines of, "how is the inning over already?  The Reds just came up to the plate!  Did he really get all three out already?"  This happened at least three times before the sixth inning.

By the sixth inning, a sacred hush befell the crowd (well, as much as a hush as can really exist when over 46,000 people are screaming things like "Go Doc!" "Go Phillies!"  and hurling various invectives at the Reds players who came up to the plate).   The previous inning, Halladay had walked the one and only Reds batter who made it on base last night and so there was to be no reprise of his May 29, 2010 perfect game against the Florida Marlins.  But Halladay was painting the corners of the plate so well and working so effectively that all of us there last night knew that he really had a chance to make some history at the Bank.  We held our breath in the eighth, and still no hits.

And then came the ninth:  Ramon Hernandez was the first batman up and he popped out to Chase Utley at second.  Then Miguel Cairo hit a foul caught by Wilson Valdez, who was filling in for our regular third baseman Placido Polanco, who was out with a sore back.  Valdez has been a surprisingly proficient journeyman; the Phils picked him up in the off-season and he's made a real contribution to the team this year playing at shortstop, second- and third-base during what has turned out to be an epic year for injuries.  He really should be considered for team MVP or some other sort of award (never mind his penchant to hit into many, many double plays).

Just one more out was all that Halladay needed.  And catcher Carlos Ruiz, who is amazing and only getting better every day, was going to make sure that he did everything he could to close this game out for Doc.  Reds hitter Brandon Phillips tapped a ball back to the plate, shattering his bat in the process.  Pieces of bat were flying (this was not, of course, visible from our seats, alas, but I saw the whole thing on replay), and between that and the moving ball, there were plenty of obstacles.  Phillips is a fast runner, and Chooch pounced on the ball, smothered it, but did not have time to get into a stable position to make his throw.  So he threw from his knees, which is always a dangerous thing to do.  He didn't want to overthrow first base and create a potential for Phillips to get extra bases.  But he also did not want to be responsible for blowing Halladay's chance at making history.  And so he tossed it over to Ryan Howard, who made the final out, and the rest, as they say, is history.

I don't think a single person left Citizen's Bank Park early last night.   The fans erupted in cheers, the park erupted in fireworks, and the Phillies jumped all over one another like extremely well paid, grown up bear cubs.

As always, Halladay was quietly professional and gave a ton of credit to Chooch.  And Charlie Manuel, the manager, was funny (at least insofar as I could understand him) in his post game interview when he noted to reporters that a lot of the credit should go to the good managing that the Phillies have.

Speaking of credit, we can't take a lot of credit yet.  There's still a long way to go in the baseball post-season and hopefully the Phillies will play a prominent role in it.

I know that Lea, at least, feels that way.  We got home last night around 9pm (it was a quick game and even with the nightmarish traffic situation that leaving the stadium entails, especially when the atmosphere is a lot like a post-game tailgate party, we got home pretty fast) and the kids were still up.

Sharon brought Hallie upstairs shortly thereafter but Lea was showing no real signs of wanting to go to sleep any time soon.  So I asked her if she wanted to watch Classical Baby, which is her wind-down DVD.  She replied, "No!  Watch baseball!"

Since I was interested in finding out what was going on in the Yankees/Twins game anyway, I happily obliged her.  She then grabbed two of the Phillies caps that we always seem to have hanging around this time of year and placed one on my head and one on hers.  She then requested that I bring her "-attic", which is how she says Phanatic.  I handed her one of our Phanatics and then, upon further request, the other.  The four of us (me, Lea, and the two stuffed green difficult-to-identify-species with big red noses) then sat on the couch and watched the game.  When the crowd on TV got noisy, Lea began to shout, "Go Phillies!  Go Phillies!" and clapped her hands with joy.  I did not have the heart to point out the distinction between red and black pinstripes.  I'm sure she'll figure out her colors at some point down the road.

Between Hallie being able to identify the key players on the Phillies by sight (I am not sure how I am going to break it to her that we are not terribly likely to re-sign her beloved Jayson Werth whom she calls by his first name) and Lea just being enthusiastic about the game, I am pretty sure that I can carry on our baseball-loving family tradition.  I still remain sad that I never got to go to the (old) Yankee Stadium with my dad, who was obviously a baseball fanatic in his own right, but I do hope that he forgives my indiscretion at jettisoning my attachment to the old home team in favor of Phanaticism of a very different spelling.

Wednesday, October 6, 2010

Voicing Our Concern

First let me apologize for my rather prolonged absence from maintaining this blog.  The end of the summer is always a crazy time for me--gearing up for school is not as effortless as it might seem on first glance (you would think that, after nearly fifteen years of teaching I'd have this down to an art but you would be very, very wrong about this assessment).  Add to this the fact that our personal lives got complicated on multiple fronts simultaneously and just hanging on for the ride (let alone maintaining a blog, or doing laundry, or sorting mail) began to seem a superhuman feat.  Within a span of three weeks we fired the nanny we hired to take over the kids' care this year because she turned out to be disastrously incompetent (a nice person but clearly not up to the job and someone who left us worrying about how safe the kids were; if things were this bad when I was at or close to home 100% of the time, I could only imagine how things might be once I was back at work); Sharon's project deadline at work meant that she was regularly getting home after 9pm and sometimes as late as midnight and doing a lot of work on the weekends or evenings---or whatever was left of them, too; and, last but not least, my mom took a major turn for the worse and ended up contracting sepsis and pneumonia and succumbing to these.  In many ways this was a blessing since the last year was one of limbo rather than life for her.  And fortunately I was able to find some extra childcare and get up to see her for a day while she was still more or less lucid.  But still, knowing how independent she was and how much she never wanted to be in the position in which she found herself (if only DNRs were stapled to bodies this never would have happened) made me feel particularly awful for her.  I am sure she is in a better place (even if at the same time I find myself hard pressed to really visualize this 'better place.'  I clearly fit into the better-than-averagely-well-informed-about-world-religions agnostic category in the recent Pew Research Center investigation into US Religious Knowledge).  Anyway, even though I find it a bit challenging to visualize a better hereafter, I certainly was able to visualize the pretty awful reality of the situation she was in.  My brother bore the brunt of her day-to-day care this past year (the nursing home she was living in is close to where he works and not terribly far from where he lives) and I am grateful to him for the time that he and his wife were able to spend with her.  I am not sure I would have been able to be as graceful as they were in the face of the slow wait for death as they were.  So, in the end, it is a relief that she doesn't have to do this anymore.  But none of that makes the experience of losing your only living parent and realizing that you are the older generation now any simpler.  The only silver lining (of sorts) is that I've gotten back in touch with my cousins on both my dad's and my mom's side  (all are much older than me; both of my parents were by far the youngest in their families and married and had us relatively late in life).  That's another long story, but it's sort of weirdly comforting to know that we're all kind of going through the same processes at once.

Anyway, the last three weeks of August were a haze (at best) as a result of all of this, and the semester got off to a rockier start than usual (can you really be five weeks behind when you have merely taught for four?  This is a question I find myself repeatedly asking).  I'm hoping that, now that Sharon's done (for now) with the crazy project that culminated in an all-weekender (seriously.  Three full nights with no more than two hours of sleep is not a good thing) that matters will improve.

And part of that improvement is returning to role of blogger-in-chief.  So, please forgive my prolonged absence.  I'll try to update even briefly from here on out.

So, without further of the Hallie-related matters that we haven't quite managed to stay on top of is related to her voice.  Those of you following our saga know that Hallie's left vocal cord was paralyzed as a result of the PDA (patent ductus arteriosus) ligation surgery that she had when she was two weeks old.  We knew that this was a big risk on babies this small (the branch of the nerve controlling this vocal cord is perilously close to where the surgeons have to implant the titanium clip to close off this open duct and make sure that the blood flows properly through the pulmonary cavity).  But there really was no choice here---this surgery saved Hallie's life. 

Hallie made little in the way of sound when she came home from the hospital and didn't really talk for her first two years and so it was hard to assess what her vocal quality was like.  Over the past two years, though, she's been talking more and these days she's quite the chatterbox.  The only problem is that we really cannot hear what she says if there is any ambient noise (so if we're in the car and she's talking to us from the back seat she is practically inaudible; likewise, if I have her in the front seat of the stroller and am pushing it, I need to stop, go around the front, and ask her to repeat whatever it is that she is saying so that I can respond appropriately).  Hearing her in a classroom full of kids (noisy or otherwise) is not at all possible.  And things are so bad that, at her most recent IEP, the following options were raised:  1. she will need to use a microphone/amplifier system in the classroom full-time; or 2. have her keep up with her sign since it's a lot more likely that ASL will be her primary form of communication given her vocal quality.  I am not opposed to her keeping up with ASL and, if there is no other alternative, I guess we're okay with the idea of using assistive technology to make Hallie's life easier.  But neither seems particularly like a solution of the first resort. Our question is:  what else can we do for Hallie?

This question is a particularly burning one given that communication is already Hallie's weak point.  As a kid diagnosed with Autism Spectrum Disorder, Hallie lacks the innate desire to engage in conversational give and take.  We've been working on these pragmatic language skills in her various therapies and she's beginning to improve a bit (she's still less good at the give-and-take than she is at chattering on about some subject of interest, but we'll take that as a very nice and hard-earned first step).  But we know she finds it frustrating when no one can hear her (she will scream greetings at her peers and they don't respond because they literally have no idea that she is talking; she shuts down a bit every time this happens).  I think that it's some sort of cruel joke that the kid with vocal cord paralysis also ends up on the autism spectrum, but I'm clearly not in charge of doling out the things that people need to go through in this life or they would be distributed in a very different manner....

So, given this situation, we needed to get in to see ENT at CHOP.  We haven't been there in a while (I am not a religious make-my-appointments-every-six-months kind of mom; our time is limited and following up religiously with our seven specialists at Children's Hospital whilst also maintaining Hallie's rigorous therapy schedule is not quite manageable.  So I prioritize and make appointments as I deem necessary).  Hallie had mostly been seeing ENT for ear tubes and check ups on their status and had not been scoped in a while (the last time was in February of 2009 when she had dental surgery).  Since scoping is not something that any of us (and especially Hallie) find fun, it's not like I've been clamoring to get in to have a doctor shove a tiny camera down her throat.

But the time had come to do something.  When I called CHOP last month, they weren't sure whether Hallie belonged in the airway clinic (for kids on oxygen or who are trached) or the voice clinic (for kids with dysphonia--or disorders of the voice).  My strong sense was that the latter was a better fit:  Hallie doesn't have stridor and breathes well (at least when she hasn't contracted pneumonia at preschool) and, while she has some swallowing issues, these are more sensory than anything.  She does, however, have a crappy voice (think a very raspy and faint Stevie Nicks or Tom Waits).  The problem is that she needed to be able to follow precise directions in terms of producing speech sounds (vowels, words, etc) and, while the kid still has some echolalia (incessant repetition of words and phrases) she isn't always hugely consistent in terms of following directions.  Moreover, and this was a big one, it seemed from my conversation with the nurse who runs the Voice Clinic at CHOP that they would automatically be scoping Hallie to visualize what was going on with her vocal cords.  While I am all for scoping if there is a purpose to it (such as:  if we don't scope her will we miss seeing vocal cord nodules or polyps that are dangerous to her) but not necessarily keen on scoping for the heck of it.  We've finally given up the habit of vomiting around here (I think we can count on fewer than two hands the number of times Hallie has vomited this year) and we don't want to do anything to set off a bout of reverse peristalsis any time soon. So I made the appointment with some trepidation.  Hallie was none too thrilled with the idea of going to see "Dr. K..." but a judicious bribe (it cost us the price of a pair of very large helium-filled Mickey and Minnie Mouse balloons and a couple of packs of princess and Tinkerbell silly bandz) sealed the deal.  So it was off to the ENT with Hallie last Friday morning.

Anyway, I think the appointment with ENT went really well.  Hallie was very cooperative in producing the sounds that she needed to for the speech therapists (they are electronically assessing kids' speech at CHOP, which apparently no one else has done thus far) and couldn't have been better behaved.  We had some real qualms about scoping Hallie given all of her issues with food/swallowing that are in no small part related to her history of long term intubation and OG tube usage (on some level I think she 'remembers' the 9.5 weeks she spent on a breathing tube and the even longer period of time she was OG-tube fed and that this helps explain some of her eating issues).  Happily, the doctor in charge of the Voice Clinic at CHOP concurred and did not insist on us doing this.    So we avoided having Hallie vomit all over the professional staff and us and having to deal with the trauma that all of this would have brought to everyone involved.

But the really good news is that there are things that we can do to improve Hallie's voice now and that we need not wait until puberty (or close to puberty) to do so.  As I suspected, the scientific research that is already out there and published is dated.  While it used to be the case that doctors did not surgically bulk (by injecting materials like collagen or teflon or one's own autologous fat, which in Hallie's case would be a bad idea since she has so little to spare) the paralyzed vocal cord and maximize the voice that way, now they are doing this.  Or, more correctly, they are now doing this at CHOP.  This procedure is done under general anesthesia for kids (for adults and probably adolescents, it's often done under local so that the ENT/Speech pathologists can ask the patient to produce sounds as they bulk the cord.  This gives them optimal voice output.  But clearly the trauma of having a doctor bulk your vocal cord via a robot that is attached to a camera that you have swallowed is a bit much for kids so they do this under general for them.  This was a relief to hear, really).  The upside of this is that the procedure carries only a small risk with it (that of anesthesia), involves no incisions and no bleeding/heeling, and allows the patient to go home that day after recovering from the anesthesia.  So it's only slightly more invasive than ear tubes.  It also means that the voice sounds better immediately (not normal, but better).  The downside is that the fix is quite temporary (may last a year or two) and will have to be repeated quite frequently.

The other option is nerve reinnervation.  This should restore the nerve that controls Hallie's paralyzed vocal cord's function.  The non-functioning nerve is first tested to make sure that there is no chance that it is working (that there's no electric impulse in it) and then ENT severs it.  She then cuts a functioning but non-essential nerve and reattaches it to the vocal cord.  Over time that nerve should take over some of the function of the non-working nerve.  While the vocal cord won't operate completely normally, some function should be restored to it and the vocal output should be near normal and the fix should be permanent.  The downside of this is that it takes month for the new nerve to take over, and so ENTs tend to bulk the vocal cord while they're doing the surgery so that the voice will sound better immediately. And the other, more important downsides are:  1.  This is a real surgery that involves an incision, scar, and hospital stay and more potential complications in terms of healing and infection.  The scar should be small and certainly Hallie has other scars, but this one will be fairly visible.  And obviously it is emotionally very hard to decide to have your kid's throat slit open.  2.  This is a new surgery for kids.  There is a long literature on this surgery for adults (it was pioneered over 20 years ago at UC-Irvine) but there are only ten kids who have ever received this surgery and it's being done at only one place and by one pediatric ENT-- the person we see at CHOP.  The youngest child she ever operated on was 2.5 and she would not do that again and the oldest was 8 and there have been a bunch around Hallie's age. But still there are only 10 kids who have had the surgery.  We know that it is quickly becoming the state of the art choice for adults and has overtaken bulking because it's a permanent fix, but still.... 

We can certainly wait and see.  Hallie's voice will not get any better, though.  And there is the very real potential that she will do it lots of damage (she basically screams to be heard and this can cause polyps and nodules and other nasty stuff, as well as teach her bad habits that will make her worse even worse in the long run).  Speech therapy for increased vocal production will likely not be of much benefit to her---her voice is pretty much what it is.  If she does develop nodules or bad habits, that will make the outcomes of any reinnervation surgery less positive.  Thus, doing nothing does not completely appeal to me (though Sharon and I have yet to fully discuss this).  And I'm not thrilled by the idea of repeated bulking surgeries, either.  But, like I said, it's hard to make a decision to slit your kid's throat.

So, in the short - term the goal is to call the mom of one of the kids who had this done (and who is willing to talk to other parents) and find out what she thinks about the whole procedure in retrospect (caveat:  we know she's pleased).  And I am sure we can ask to speak to other parents (I'm not sure they'd want to speak to us, though).  And we can read up on this procedure and learn more about it (I somehow find more knowledge comforting).   And we can always take the middle road and fence sit a bit (historians LOVE to do this):  we could do one bulking and wait a couple of years until this surgery has been done on more kids (even if it is still just being done by this one doc at CHOP).  From what I've read, there is little chance that it will ever be performed laproscopically (you simply have to see too much and check on too much when dealing with isolating and cutting tiny nerves in the neck) but still, more experience is probably a good thing.  That said, both Sharon and I find ourselves oddly at ease with this particular ENT and for whatever reason really trust her (this is not our first experience with her---she has seen Hallie a few times over the past four years and was the first ENT that ever scoped Hallie after we sprung her from the NICU).

Anyway, that's all for now.  If anyone has any opinions, do weigh in.

And, like I said, there will be more (can there really be fewer?) updates soon and some pictures of the kids, who are both doing great, soon.