Bumped

They just pushed Roo's scope out 2 weeks to January 19.  Seems Dr. XYZ who will be performing the scope has a meeting he cannot miss on Jan 6.  Our next option is the 19th.  Because what's another two weeks when there might be a mass growing in your child's esophagus?  Merry Christmas.

The search for a new team starts now.  Anyone have any opinions about Comer Children's Hospital (U of Chicago)?

Results? What results?

For those of you anxiously awaiting results from Roo's big polyp biopsy last month, you might want to get comfortable. In a sudden 180, the hospital now claims that no polyp biopsy was ever taken.  I beg to differ seeing as...

1. I spoke directly with the doctor who performed the scope immediately following the procedure.  He showed me pictures of the polyp and assured me that he took biopsies from the polyp itself, as well as the surrounding tissue. Results would be back in about a week. 

2. After calling to follow up for over a week with no results, our case managing nurse practitioner contacted the scoping doctor to be sure that he had in fact taken biopsies.  She reported back to me that he did, they were just taking a while in pathology.

3. Most convincing to me is that who in their right mind, while in the midst of scoping and taking biopsies from a sedated toddler's esophagus, upon discovering a foreign mass would choose NOT to take a sample of it?! Wait for another day?  Another round of general anesthesia? 

Well, anyway, that's the story I'm getting.  With back paddles splashing faster than a rafting team heading for a waterfall, our GI team claims that a miscommunication led to my erroneous assumption that a polyp biopsy was ever taken.  In addition, pediatric esophageal polyps are nearly always benign and it's no big deal because we'll take another look at his next scope.  And this time the one doctor who really knows about EoE will do the scope - you know, the one we wanted to see but couldn't get an appointment with because he gets really really booked up with the patients who opted into his research study on EoE?  Really?  Mind if I take a knife to your kid's throat repeatedly?  If I don't get what we're looking for, don't worry about it.  I'll call in someone who does.  It will probably be fine. 

I've had a couple of weeks to let this sink in now and the initial fury has dissipated to a more general seethe.  Basically we can't change anything at this point.  There's not exactly an abundance of brilliant, well-funded, pediatric EoE teams even in our booming metropolis.  I'm beginning to take a hard look, however, at what that brilliant team from the well-funded hospital is getting us.  Maybe small, independent, and kind of smart is more our speed.

Peaches and apples and beef, oh my!

Still no word on the polyp but not for my lack of asking.  In fact due to my recent, frequent repetition, the word, polyp, has officially lost all meaning.  Polyp.  polyp.  polYp.   But I digress.  The real reason for this post has absolutely nothing to do with, ahem, polyps. 

Patch testing rocks.  Aside from the mild discomfort, the 3 separate hour-long trips back and forth to the allergist's office all during nap time of course, and the gray rectangular tape marks that refuse to dislodge from Roo's back, I love patch testing. 

Care to join me in my beef dance?  That's a big fat positive to beef, baby!  Take that doctors who think I've lost my mind.  My boy is allergic - and I mean red, puffy, welty-skinned ALLERGIC to beef!  So aside from getting to gloat a bit about how I was right, the positive beef patch test gives me reason to believe that there's a chance, however slim it might be, that his next scope might be clean.  Regardless of the scope, clearly beef is not helping the kid out, so it's nice to have that matter settled.

The not so exciting, yet equally interesting piece of the puzzle is that he also tested positive to apple and peach.  Who the heck is allergic to apples?  Aren't apples one of the first baby foods you introduce?  Right after homemade organic butternut squash and pear of course.  So, yup, in retrospect, he's been having symptoms I can relate to apple.  Like, the frequent vomiting after drinking apple juice.  How did I miss that one?  I guess that fact that he adores apples clouded my judgment.  Well now I know.  And peach?  I can't even remember him having peach but I'm sure I offered it more than a time or two.  Nix peach.

So, as much as I loathe the ever increasing list of foods to avoid (peanuts, tree nuts, egg, milk, beef, apple, peach) I'm happy that we might be making some progress.  I'm thrilled that we might have an explanation for why his symptoms never subsided - namely because we started giving him copious amounts of beef following his one clean scope.  And, dare I say it, I think he might not be allergic to milk.  Yes yes, I get it, I know, don't get your hopes up.  But still, the patch was negative for milk.  Could there be hope?  Because I've got to tell you, if his body's open to bargaining, I'd trade milk for beef/apple/peach in an instant.

Wacky pathology jokes

At this point the pediatric pathology department is clearly playing a cruel joke, the butt of which is undoubtedly me.  I was mad at first but I guess if anyone needs a good laugh, it's those guys.

I checked in with our CNP in GI again yesterday and while she still has not received word from The Pathologist regarding the polyp, she did thank me for my patience.

So, after the obvious, did they lose the biopsies(?!) my question is this: Am I to believe that hidden deep in the recesses of one of the world's best funded hospitals for children there resides exactly one pathologist?  The backlog truly must be enormous.  With resources so strapped, is he working by candlelight?  No wonder there isn't time to reply to email since the time change.  Dusk comes so early these days.  Has anyone considered the idea of hiring a nurse? an assistant? how about an intern to answer emails?  Heck, maybe it's time to throw caution to the wind and bring in another speech therapist while we're at it.

The anxiety of the past two weeks is waning only because my body can maintain that level of stress for this duration.  Basically, I don't have that kind of time. 

Fortunately I've been able to refocus my efforts on trying to discern the strange bumps and blotches on Roo's back following patch testing this week.  For those of you unfamiliar with patch testing, imagine 30 tiny, dime-size cups of various substances (oh you know, chicken, green beans, fish, wheat, that sort of thing) adhered with surgical tape to your back for 48 hours (see Exhibit A).  Stinky? A bit.  Uncomfortable? A little.  Informative? We'll see.  Roo goes for his final reading with the allergist today.  To me it looks like something flared overnight, but as we all know, I've been wrong before.

Exhibit A

Not yet...

Still waiting on those polyp results.  Perhaps tomorrow?  Our CNP is contacting the pathologist to find out what's taking so long.  Fingers crossed.

My latest beef...

Roo's latest EoE scope results are in and it appears that "good" news we've been hoping for will have to wait for another week.  The eosinophils are still in full force.  Actually, they've reduced ever so subtly in the mid-esophagus but are thick as ever in the distal esophagus.  So, essentially we took dairy out of his diet (again) for seven weeks, sedated the kids, stuck a camera down his throat and now we know....absolutely nothing more than we did seven weeks ago.

Maybe milk isn't the culprit after all?  Or it's not the only one?  Maybe there's a new allergy?  Or allergies?  We have no idea.  We're no closer to an answer but it does help explain why Roo continues to vomit regularly.  There's still the lingering possibility of beef, but everyone I mention it to starts talking to me like I'm pushing a shopping cart down the highway wearing a bird carcass on my head. 

I am getting a thorough education in the ways my own body manifests stress...pimples, inexplicable exhaustion, my own GI trouble of which I'll save the gory details, living in gym clothes without venturing anywhere near the gym, constant overwhelming urge to drink milkshakes, and infrequent showering have all become par for the course because when you look good, you feel good.  

The polyp biopsies have been sent to a different lab for pathology.  We wont have them until Monday.  Until then all I really want to do is drink wine, eat chocolate, and sob quietly whenever the mood strikes.  Should be another stellar weekend.

RAST

RAST results are in.  New additions to the life-threatening list...

Walnuts
Hazelnuts
Pecans
Macadamia nuts

and of course...the dreaded peanut, which we already knew about.  Could really use a little good news this week. 

Same day. Different hospital.

Sooooo...let's just say things didn't go exactly according to plan yesterday.  We started out well enough with Roo and I both surprisingly chipper to be up well before dawn.  He was a regular bundle of cotton candy and kisses, spotting city buses with a commuter's precision, singing endless verses of The Wheels on the Bus, practically bursting the seems of his blue stripey pj's and woolen winter hat with incomparable cuteness.  It wasn't until we neared the hospital 30 minutes away that he started to wane.

"I want my Kaloo." 

Oh crap.  Kaloo.  Imagine my horror at realizing mere moments from IV insertion, that I had forgotten Roo's beloved Kaloo bunny at home.  I mean, we don't go to the grocery store without Kaloo.  Surgery?  Are you kidding?

Somehow we made it through the procedure but it wasn't pretty.  He had a rougher time coming around from the anesthesia than I've grown accustomed to, and the fact that he was hacking like a seal and spewing bloody saliva afterward didn't help matters.  That hadn't happened before. 

The immediate results from the scope were mediocre at best.

Good news: the GI doc performing the scope did not see evidence of furrowing or white plaques that were spotted last time.
Bad news: There's a polyp in Roo's esophagus and he has no idea what it is.

Obviously we won't know anything definitive until the biopsies are back late next week.  Until then, we wait.

Having conquered the beast that is toddler surgery, Mufasa and I were all too happy to turn into bed early to face the polyp issue with clear heads in the morning.  Our sweet dreams were soured, salted, and stewed at 2:30 am when Roo awoke barking, sobbing, vomiting, and gasping for air.  I've experienced the Stridor of Croup a few times in this motherhood stint but this was different.  The kid couldn't catch his breath, his stomach was sucking in so far in with every breath I swear I was seeing his spine.  He was throwing up and choking.  Then his lips started getting a little blue.  Off to the ER.

Two breathing treatments, a second IV in 24 hours, plenty of steroids, more vomiting, 2 rectal temps, and 4 and a half hours later we came home.  He's bruised, coughing, exhausted, and covered in medical tape he won't let us peel off, but as usual, still smiling.  So hoping tonight is less eventful.

Zoo pals to the rescue

At the urging of our new allergist, Roo's MedicAlert bracelet has been ordered.  It's supposed to help protect him in the event of an anyphylactic emergency, among other possible catastrophes.  Basically, we spent $30 on a mesh strap decorated with zoo animals.  He's supposed to wear it on his wrist at all times.  Engraved on it are the words SEVERELY ALLERGIC TO PEANUTS. Egg and Milk Allergy. And a 1-800 phone number for the MedicAlert hotline.  So that's all great and everything, but what are the chances he keeps it on in the first place?  And call me a cynic but in the event of a true emergency, as he's wheezing, swelling, and gasping for air, who pray tell, with the possible exception of a well-seasoned paramedic team, is going to think, oh, what a cute bracelet!  I should see if there's any info about this kid's medical history engraved on it.  Anyway, I ordered one.  Marketing ploy to play on parents' worst fears is highly effective. 

We've been busy on other fronts as well.  Pre-op physical - check.  RAST blood draw - check.   Four vials of blood in exchange for a stuffed animal camel.  And alas tomorrow's the big day for scope #5.  That's all for this week.  The little ninja gets a brief reprieve next week, then we're back to 3 a week allergist appointments for patch testing.  And so it goes.  I'll post scope results when we have them next week.

November Social Calendar

Roo had the pleasure of a 3 hour appointment with his new allergist this week.  She seems qualified and knowledgeable, she pricked his back 32 times and injected various poisons looking for hives...the usual.  We didn't test for nuts to avoid another exposure but he's still very positive for eggs - both yolks and whites but no new culprits appeared on the prick test, so that's positive.  That and he didn't throw up even while the nurse and I pinned him to the table, pricked his back and forced him to lay face down in a puddle of his own snot for 20 minutes.  On the other hand, now she has me freaked out that he probably has asthma too. 

Still to come this month...

- Pre-op physical with the pediatrician
- Surgury (5th Upper Endoscopy to date to check for eosinophils since re-eliminating milk)
- Blood draw for RAST for peanuts and tree nuts
- Allergist (patch test application)
- Allergist (patch test removal)
- Allergist (patch test evaluation - all separate appointments, of course)
- Flu-shot testing
- And eventually, we hope, one flu shot, rather than the series of 4, but remains to be seen.

Can barely wait to see what's on tap for December!

Vomitathon

For a while there I thought we might be trending toward less retching and spewing.  Four times this week!  One crying induced choke when the babysitter showed up, one regular old-fashioned gag on the very last bite of an hour long dinner session, one middle of the night milk disaster, and one inexplicable couch vomit that even he had no idea was coming.

What gives?  He's off milk.  Off eggs.  Off nuts.  Off any bites larger than a dime.  He's working on his chewing and maybe even starting the get the idea, if not the hang of it quite yet.  He doesn't seem to be in pain.  He's happy - often immediately before he pukes and almost always immediately after.  There's the runny nose factor, which always makes his feeding and throwing up worse, but if that's going to be the deciding factor, there's no recourse but to move.  Runny noses are a way of life here until mid-April at least. 

The thing is, I don't even care about the mess anymore.  It's rather like changing a diaper - though I wouldn't mind giving up that gift of motherhood soon either, and despite the thousands of changes I've performed, I would still opt against doing it on the table of a crowded restaurant.  It's all the work that goes into it.  After an hour of helping to spoon tiny nibbles of hearty gnocchi in oil-rich marinara and fluffy egg-free, dairy-free meatballs into his mouth, he gives it all back on the last bite.  Last night, he put away nearly half a chicken breast, couscous, and a few green beans.  Happily, he fled the table, played with his beloved Silly Bandz for ten minutes, then puked all over the couch.  He explained that his tummy never even hurt.  He didn't know he was going to throw up. It surprised him as much as the rest of us.  At least it was bath night.

Maybe the EoE's still bothering him.  The next scope's set for November 5.  In the interim, there's the allergist appointment, flu shot sequence, and pre-op physical preceding the scope.  It's a laugh a minute for this kid.

Boycott

Roo's on strike, and since he's a one man union, I don't know who to contact regarding negotiations because he's not talking.  Bored and irritated with my my cheek prodding, chew tube thrusting, and constant encouragement to "move it to the side", he is refusing to participate in mom-imposed speech therapy sessions.

We're at an impasse marked by lengthy standoffs where he holds lumps of soggy chicken or rice in his mouth while ever enthusiastically, I prompt him to move it to the side, and chew chew chew a hundred times or so.  When that doesn't work, we pull out the mirror and I show him how disgusting it looks oozing out of his mouth - okay, I don't tell him he's disgusting, but it doesn't mean I don't think it.  The mirror's supposed to help him see where he's moving the food.  He prefers smearing food on the mirror to see how that looks.

I am a broken record.  Move it to the side, Roo.  Use your tongue.  Use your tongue to move it to the side like this.  OK, good try, now use your teeth.  Chew it here on your back teeth.  Feel it there by your cheeks?  I see the food in the middle of your mouth.  Can you move it to the side?  Now chew like a lion!  Like this, see?  Swallow your bite.  Did you swallow it?  You did?  Vigorous applause, stickers, and a three ring circus ensue when a bite is eventually swallowed.  The poor kid.  Even I am annoyed with me. 

Is he going to outgrow this oral delay?  I mean, aside from the food allergies, EoE, oral delay, and failure to thrive, he is, ahem, healthy.  His gross motor skills are on track - if not outright advanced.  Can most 2.5-year-olds do the monkey bars without assistance?  Maybe if they weighed 22 pounds they could.  His kids' gym class teacher recently recommended a "real" gymnastics gym for him after witnessing his superior balance, strength for size, and fearlessness.  Of course she probably thinks he's one.  He talks like a champ...for example, "Actually Bean, we watched Yo Gabba Gabba earlier.  How about we watch Ralph? It's your favorite!"  or "That was a little bit whiny, Bean.  I don't like that.  Say it again in your regular voice".  Aside from the obvious exploitation of Bean for his own benefit, these are adequate sentences for toddler boy, no?  He walks, he runs, he jumps, he sings, he dances, does somersaults, and flips, he builds Lego towers, pees in the toilet, and has mastered my iPhone.  The kid is like a tiny ninja, so why the heck can't he chew a bite of pasta?

Wait Listed

No surprise here, but Roo has an oral motor delay.  He doesn't lateralize his tongue properly to move food where it needs to be in order to chew.  His jaw is weak and uncoordinated - no rotary chew pattern here.  He exhibits a "palate mash" in which he uses his tongue to smash food against the roof of his mouth rather than actually chewing it.  He has a narrowed palate (probably caused by the incessant thumb sucking) that makes it difficult for him to deal with thick liquids and purees (and yogurt, apple sauce, soup, mashed potatoes, etc.)  Coupled with a raw, red esophagus, it's no wonder the kid gags all the time.  Happily, his diagnosis is once again official, twice monthly speech therapy should help, and our insurance should cover it. 

Unhappily, we've been wait-listed by the speech therapist.  I guess I should have coached him better to let the food dribble out of his mouth or not to stick out his tongue when prompted.  Either that or we should have sent him to speech therapy prep classes to get his chewing scores up for his applications.  But no.  Too late.  Wait listed.

In reality, The List is not based so much on level of need as it is on who signed up first.  I'm not sure which way is more fair, but either way, we are not at the top of the list.  The scheduling nurse did offer to let me give them a call every month or so just to see if there might be an opening.  I'll be sure to send her some flowers for the generosity. 

So, I'm checking out those nifty early intervention programs I've heard about.  The danger again is that there's a waiting list and in less than 6 months Roo will no longer qualify for early intervention when he turns 3.  We're also open to a local speech therapist that is not associated with our hospital.  Any recommendations around Chicago/Western Suburbs?  We need a facility that offers feeding therapy.  It looks like there are lots of speech options, but many don't do feeding.  

For now I'm the therapist.  I'm reading everything I can find on oral delays, feeding therapies, etc.  I've got my Nuk brushes, my chewy tubes in varying colors and hardnesses, and this terrifying vibrating maniacal clown that Roo has deemed, "Helper Boy".  Helper Boy gives kisses on his cheeks and then he can bite Helper Boy's hands to wake up his mouth and get him ready to eat.  Disturbing on many levels, I realize.  I'll bring down the mirror because it's supposed to help him to be able to see where he puts the food.  We're practicing biting on the side, using molars, and chewing up and down like various animals.  As if we didn't have enough to worry about at meal time, right?  I'm just keeping my fingers crossed that this helps.

One Luft Balloon

With one kid, the doctor's office is all fun and games.  Let's read a book, sit on my lap, the doctor's going to listen to your heart now, I'll hold down your arms straight-jacket-style while the nurse impales you with a couple of needles and we'll go home with a sticker and a lollipop.  With twins, you see, it's not so easy.

2.5 year check-ups for Bean and Roo yesterday.  Allow me to set the scene...two hyper, diapered 2-year-olds, roused prematurely from their naps, chase each other around the examining room vying for my iPhone, which as it turns out, is the only mode of suitable (though somewhat questionably so) entertainment I've remembered to bring along.  Bean, being the bigger and stronger of the two, rips the phone from Roo's hands with ease and positions herself facing a corner.  Roo, smaller, but much scrappier and utterly fearless, climbs onto the plastic chair that is positioned too close to the examining table, scampers onto the table, and with a running leap jumps directly onto his sister's head from a height that is greater than either of them.  The phone crashes to the ground, two toddlers wail, the doctor knocks, and we're just getting started. 

Fast forward to vaccines.  Flu shot for Bean, Pneumococcal conjugate for both (Roo gets his special egg-free flu shot at the allergist).  Imagine you are 2 years old and your greatest fear in life is that you might one day need a shot.  Now, imagine that not only is your mother requiring you to submit to this horrendous and seemingly inexplicable form of torture, but first, you must watch your sister suffer.  When she stops writhing and sobbing long enough for me to get a hand on you, guess what? Your turn!  And oh yeah, I forgot the lollipops, so Bean gets the soggy half-chewed ring-pop she started 3 weeks ago.  Roo, one linty organic pop from the bowels of my purse coming right up. 

Feeling guilty about my lack of pre-planning for the appointment, I attempted to regain the love of my children by stopping at the grocery store for balloons on the way home.  Having been brainwashed by their father, they both bypassed the princesses and superheroes in favor of football balloons.  With mylar footballs in hand, shots were forgotten, Mom was forgiven, and all was well with the world.  Until of course, in all her enthusiasm to show Daddy her Chicago Bears balloon, Bean managed to shake hers right off the string and away it went.  One luft balloon filled with unspeakable sadness.

Off the Sauce

The verdict is in and while it wasn't what we wanted to hear, at least we can begin healing up Roo's welted, pus-ridden esophagus now.  I still have no idea how or why we didn't notice any change in eating habits, behavior, etc. with the reintroduction of milk last spring, but I do know that all those cheddar goldfish crackers and ice cream cones this summer were not as innocuous and they seemed.  Aside from the white plaques and pus, his eosinophil count was back up to 20-30 hpf (per high power field in the microscope).  Normal is zero.  Chronic GERD sufferers can have up to about 5.  Our hospital makes the EE diagnosis with 20 hpf, some places diagnose anyone above 15 hpf.  So, it could be worse since his initial count was 70-80 hpf a year ago, but needless to say we've eliminated dairy once again.

Believe it or not I'm still waiting to hear what our official course of action is from the doctor's office.  We've been instructed to take away all the milk, whey, casein, etc. and we've made the switch back to soy infant formula with much less kicking and screaming than I anticipated.  I'm guessing we'll need to rescope in 8-10 weeks to see if he's clean but don't know for sure.

We're heading back to speech therapy for a new evaluation on Friday.  I can hardly wait.  I am so looking forward to a day when every meal takes less than an hour to consume.  He tries but he's just so painfully slow, and then of course, there's the constant threat of the gag.  He threw up Saturday night moments before the babysitter arrived, and gagged on a chick pea at breakfast this morning.  I don't know what I was thinking with the chick pea.  Just got a little ahead of myself, I guess.  Depending on how the new evaluation goes, we might need to start looking into some early intervention programs for the oral delay.  Hmmm...why do I feel like I've been here before?

Still Waiting

They wouldn't make us wait and wonder over the weekend, would they?  Still waiting for the call...

White Plaques and Furrowing

Roo had his third upper endoscopy yesterday.  As usual, he was a total trooper.  I ripped him out of bed at 5:15 am, slapped a clean diaper on him, and pushed him out the door in his PJ's before he'd have the chance to ask for a drink, which of course, he couldn't have.  The procedure went well overall.  He was a little hesitant to go along with the nurses at first but the "little something to relax him" that the anesthesiologist gave him did the trick almost immediately.  He was all grins and giggles, watching the trails from his fingers, and driving his hospital bed back to surgery complete with "beep- beeps". 

Now, I don't condone substance abuse at any age but man how I wish I had a little bit of that happy juice in the fridge to administer to the kids from time to time.  Looly's hysterical because she scraped her elbow?  Happy juice.  Bean's on another biting spree?  Happy juice.  Roo's chucking Legos at the cat and crying when the poor thing seeks shelter in the basement?  Happy juice.  Accidental shopping spree?  A little happy juice for Mufasa's water bottle while handing over the receipts.  Okay, I guess I'm starting to see why they don't dole out gallon jugs to the parents...

Anyway, we won't have the official results for another day or two but I am ceding victory to the know-it-all GI doctor.  I honestly still can't believe it but the results of the scope were not good.  For the first time ever there was visible evidence of allergy cells (eosinophils) in Roo's esophagus.  Essentially, the doctor could see, and provided me with photos, of the inside of his esophagus complete with nasty little white plaques (pussy groups of allergy cells) and mild furrowing (kind of like little ridges) - two of the tell-tale signs of EoE.  The worst part is that in his previous scopes he never had any visible evidence of EoE.  The biopsies revealed EoE, but his esophagus looked healthy.  Seems like it's gotten significantly worse this year. 

I am beyond bummed.  I so thought he was tolerating the milk.  I'm so sorry that he has to be experiencing pain whenever he eats or swallows for that matter.  And selfishly I'm dreading the return to a dairy-free existence.  I'll save the true lament for once the biopsy results are in but it's not looking good folks.  In fact it looks worse than before.  Maybe I could sneak just a tiny bit of that happy juice for me?  Feel like I could use it.

EE strikes again?

Roo had his annual GI check-up today and in all my naivete I was considering it a non-event.  I was planning to blog about how his EoE is under control, he's eating a wider variety of foods, starting to gain weight here and there, doing great.  Right? 

His original GI doctor moved away this spring.  Then, I found out his allergist is no longer at the hospital we use.  So today we met with a wonderful nurse practitioner we saw once last year, a new doctor, a nutritionist, who, no offense intended, but I could give suggestions for increasing caloric intake at this point, and no allergist.  I would love to be witty about the appointment but I just don't have it in me.

Roo needs another scope to check up on his EoE.  That wasn't a surprise.  The part I did find surprising, was the new doctor berating me for reintroducing dairy.  The new doctor is convinced that Roo's allergy cells are back and that the premature reintroduction of dairy is to blame.  Did I mention that it was a flipping GI specialist in the very same hospital who told me to give him dairy back in April!  This is not a huge department.  Given the fact that the new doctor is the department head I'm guessing doctor number two, who told me to put dairy back into the diet, is about to get a workplace whooping.  Unfortunately it still doesn't make me feel any better. 

New doctor argues that the evidence is clear - Roo isn't growing or gaining weight according to the chart, his appetite is meager at best, he vomits, wakes at night, and still seems uncomfortable at times.  Well, I'm not convinced.  He was absolutely, exactly the same when he was NOT eating dairy.  And thank goodness for the blog for giving me a documented history of what he was doing while he was off dairy, namely, vomiting, not eating much, not gaining weight, and waking up at night.  Just like now.  The kid has an oral delay.  He gags.  He has reflux too but let's save that story for another day. 

Ugh, I am so frustrated.  The thought of taking him off dairy again, and this time for longer, makes me want to puke myself.  Maybe the kid just won't eat because his diet gets completely revamped every few months.  I just got him to tolerate some nice buttery, creamy, lusciously high-calorie foods.  Either way, the scope won't lie.  Here's hoping I'm right.

Still alive and kicking...for the most part

In case there was any doubt, it turns out life without childcare is somewhat more hectic than life with it.  July was a blur and I'm still not quite sure what happened to August, but here we are solidly into September.  School is in session and I have found myself with a moment to spare for what feels like the first time since our Au Pair packed her bags back in the middle of July.

Forget family dinners and monitoring weight gain, I'm just thankful to be here to tell the tale.  Granted not every summertime situation was handled with Claire Huxtable's knowing poise and endless good humor but alas, the kids and more importantly, Mufasa, are still talking to me.  The gym, the blog, and inspired meal planning took a back seat to using every ounce of my will power not to smack anyone - Looly for telling me she didn't like me and wanted a new Mom on my birthday, the lady who used her extra inches to nab the last container of Similac Go n' Grow at Target even though I was clearly reaching for it first, the librarians who continually accuse me of not returning books I never checked out, Roo every time he spits out food he's eaten a hundred times before claiming he doesn't like it now, and so on.  I required a couple of mandatory mommy timeouts and didn't make it to 5 pm every day before popping the Viognier but nobody got hurt.  It's all about managing expectations. 

We're not quite back up to speed yet but the three glorious hours per day I've reclaimed while the little ones are at school are helping me feel human again.  Showering has resumed as a near daily event.  My gym card is back in rotation, and at long last I'm blogging.  We've hired not one but two competent babysitters who, for a fee, tolerate Bean's ceaseless screeching while we are away for a bi-monthly date night out.  The little kids are transitioning to new teachers, new friends, new rules, and most importantly being dropped off at school.  By transitioning, of course, I mean full-out wailing, writhing, spitting, hissing, and attaching themselves to my leg until their teacher pries them off with a crowbar.  So the gist is, we're getting there.

End of an Era

Sigh.  As of Thursday, we will be saying goodbye to our dear Au Pair, friend, and pseudo-big sister, Wiebke, aka ViVi.  For the past year she's put up with all of our family's idiosyncrasies and ridiculous demands.  You think I jest, but just try watching Yo Gabba Gabba reruns for hours at a time every time you sit down to "enjoy" a meal without throwing the toaster through the television. 

She has snuggled and fed, read and sang, danced and played.  She has diapered stinky butts, band-aided bloody noggins and slathered vats of Vaseline on Roo's lizard legs (if only we could make a handbag out of him!).  She's built countless Lego and block towers only to have them destroyed by three-foot-high vigilantes at the final precarious moment.  She's cleaned up hair-balls, live mice, and kept a sense of humor on rare occasions when the cat mistook her bed for the litter box.  She's instilled a sense of fear in our children (in the best possible way) so that upon hearing footsteps at their closed door during nap time, the little ones dive instinctively into their beds and bury their heads amidst cries of "Vivi's coming! Vivi's coming!"  She has manned solo trips to the swimming pool with all three kids in 90 degree heat, moderated mortal combat between twins, caught toddler vomit in her bare hands, and lived to tell the tale. 

Without her this blog wouldn't exist.  She's provided me with the opportunity to pursue projects outside the realm of child-rearing, knowing all the while that my little ones were in capable, loving hands.  She's given me a year of sanity, date nights, relaxation, and the ability to go to the gym.  I could not ask for more.  Thank you, Wiebke.  It's been a pleasure. 

It is with heavy hearts and eager passports that we say goodbye.  We look forward to a reunion on the other side of the Atlantic.  Farewell, Vivi.  You will be missed.

Good Tidings

A fortuitous week all around with lots of good news to share!

1. The new kitchen design is working out beautifully.  We're still waiting on stools but the little kids have taken to standing on kitchen chairs pulled up to the island to watch me cook.  Better yet, they like to stand there and eat a snack while they watch.  Even better still, good, fatty, nutritious guacamole is becoming a favorite.

2. Though we continue to discover more annoying molluscum bumps on all of the kids, ZymaDerm appears to be working.  Roo's worst (and most obvious) patch of bumps is clearing up.  It didn't happen in the 30 days promised by the ZymaDerm guarantee, but they are exploding and vanishing now, about 6 weeks into treatment. 

3. Summer is here.  Our first CSA vegetable box of the season arrives today!  According to Angelic Organics, we're scheduled to receive purple and white scallions, various squash and zucchini, broccoli, oregano, cilantro, lots of cooking and salad greens, and the treasured single harvest garlic scapes.  I can hardly wait to get started.  Fresh organic greens salad with flank steak tonight, baby!

4. Last but certainly not least, Roo has reached another milestone recently - 21 pounds!  Dairy continues to agree with him and while it's still not his favorite food group, the addition of cheese, butter, and cream to foods he does like seems to be helping him pack on the ounces.  He's still no hulk for sure (but please don't tell him, especially if he's wearing his Incredible Hulk t-shirt!), but the pediatrician gave us the go ahead to wait and see before we have to go back to the food aversion specialist.  His next pediatrician appointment is in early July.  Do I hear 21.5 pounds? 

Not a bad start to summer.  Here's hoping the good tidings continue.

New Kitchen!!

Okay, we're waiting on the counter stools, the tile backsplash is still pending but here it is before...

And AFTER!!

Back in Business

Phew!  After a week of more strategic than usual meal planning, hectic restaurant outings where nobody actually ate anything, and doing dishes in the bathtub, our "minor" kitchen remodel is nearing completion.  This weekend we regained use of our countertops, new extra-deep, single-bowl sink, two stylish new faucets, and a brand spanking new garbage disposal in the island sink. 

The troops will be back today to finish up some patching and painting, to haul the debris and by god, I hope, to reconnect the dishwasher.  As it turns out, putting the endless stream of sippy cups into and out of the dishwasher is not the monumental chore it once seemed when compared with the alternative of carrying them to the river. 

The kitchen is glorious.  Opened up floor plan, glossy granite, shiny sinks, leak-free faucets, a sprayer that actually sprays, countertops that no longer grumble and shake in protest when we run the garbage disposal - marvelous!  Of course now we can't afford groceries but still totally worth it, don't you think? 

The very best part is that with our new super-island, the kiddos can get their hands into the batter without getting in the way.  At least that's the theory.  I'm looking forward to making dinner without three little butts propped on the counters between sharp knives and steaming pans.  I can't believe no one's lost a finger yet.  Now they'll each have a clear view from their own safe little perch on the other side of the island. 

I'll post some before and after photos when it's finished, with any luck later today.

Eosinophil Awareness

Pull out your party hats, it's National Eosinophil Awareness Week!  I haven't written much specifically about eosinophilic disorders lately because Roo's been doing so well.  His last endoscopy in November 2009 was clean, meaning he had no eosinophils (white blood cells) hanging out in his esophagus wreaking havoc on his digestive tract.  

Like so many of these crazy allergic diseases, Eosinophilic Esophagitis was pretty much unheard of until the 1970's.  Since that time, there's been a rapid increase in cases and no one knows exactly why.  The disease is more common in boys than girls, by the way, and while cases appear all over the world across all nationalities, it seems to have a particular affinity for Caucasians.   

We are the lucky ones because we've been able to manage Roo's symptoms through simple diet modification.  Many children are not so fortunate and experience chronic chest and stomach pain, failure to thrive, vomiting, dysphagia (that's when food gets stuck in the esophagus and needs to be surgically removed or regurgitated - one of Roo's big symptoms) from staggeringly long lists of foods and environmental allergens that no one else seems to think twice about.  Can you imagine?  And that's not even taking into account the emotional and social impact these kids suffer.  For many the only "safe" nourishment is specialized amino acid formulas delivered through feeding tubes. 

So, in an attempt to spread the word and garner support for finding a solution to this crappy condition, please visit the American Partnership for Eosinophilic Disorders.  This organization is not flashy but it's incredibly informative, well-organized, accessible, supportive and serves as a fantastic resource for our family and thousands of others dealing with eosinophilic disorders.

Jinx

I came home yesterday to the kids playing "throw up".  Each of them had their own infirm stuffed toy and a bowl.  They took turns making wretching noises while Baby Iris, Broby, and Elmo hung their weary heads over their bowls and presumably hurled.  Then, Looly, Bean, and Roo dutifully carried the imaginary contents to the toilet where they dumped it and rinsed out their bowls in the sink.  This kept them enraptured for half an hour at least. 

So it only made sense that after all of my rejoicing on the dairy trial results, Roo threw up his real dinner last night.  He ate well and even fed himslef about half his plate - turkey meatballs, elbow macaroni pasta (egg-free of course) in butter and ground flaxseeds, and buttered corn (Looly's choice of vegetable last night). 

To celebrate I gave the kids chocolate chips for dessert.  They've had the same dairy-free chocolate chips lots of times but typically I buy the mini-chips.  This time the grocery store was out of mini's so I picked up a bag of regular sized chocolate chips - still dairy-free mind you.  Wrong decision.  Roo gagged on a chip, spit it out, followed by the entire contents of his stomach. 

I'm positive it had nothing to do with dairy and was just another inevitable event in the world of reflux and oral delays but still.  The sad truth is when it happens my mind is not really on my poor suffering, vomiting child.  Instead I'm silently calculating the caloric value of each heave as it exits his body.  Last night, 300 calories at least.  Ugh.

Oh yeah.  The cat threw up yesterday too.  Special thanks to Vivi for cleaning up that one.

Record Week

After much anxious breath holding and hand wringing, I am officially ready to declare Roo's dairy trial....a SUCCESS!!  He's been eating dairy laden foods for a few weeks now and appears to be suffering absolutely no ill effects.  Pizza, ice cream, cream cheese on toast, real yogurt, cream sauce, cereal with milk, and anything with "natural flavoring" have been making regular appearances on his plate.  I am ecstatic.  I'd consider buying a cow to tie up in the backyard but our town probably has an ordinance against that. 

Roo's horizons have been broadened exponentially and whether he realizes it or not, he's eating a little more.  Granted eating more includes handfuls of goldfish crackers, cheese puffs, and these strange sugar yogurt crisp things - the cumulative nutritional value of which I am sure sums zero, but still, he's chewing food and swallowing it.  Victory is sweet. 

In fact, I hesitate to write it for it seems every time I do we begin to regress once more, but our baby scale has been creeping up.  Roo had three new weight records this week!  The ultimate was a reading of 20 pounds, 12.5 ounces last night.  Yes he chugged some water, ate a good dinner, and then drank a couple ounces of milk, but you know my theory.  We're all about extremes.  I don't care how he got there.  He got there.  A few more ounces and we'll be staring 21 pounds down the barrel. 

And no, I still haven't called the doctor to figure out our next steps but I think I'll wallow in the glow of this moment for just a little longer before I do.

Molluscum Contagiosum

Besides the crusty, red eczema that plagues his legs and arms, Roo has this nasty patch of hard little bumps around his ankle.  Typically it doesn't seem to bother him but it is unsightly - imagine a patch of twenty or so little warts, mostly flesh toned but every so often with a red oozer or two.  We saw the pediatrician a few weeks ago and she took a look.  Add another ailment to Roo's cirriculum vitae: Molluscum Contagiosum.

Molluscum are not warts exactly.  They are caused by a virus and are apparently, quite common in children.  They are harmless, or so I've been told, and the general consensus is to let the Molluscum run its course and the papules should go away on their own.  Sometime in the next few years, that is. 

In case you missed the implications of the name, Molluscum Contagiosum are well, contagious.  If you have them, you're not supposed to share towels or baths to avoid infecting others.  Of course, I found that out after we discovered a few papules on Looly's legs, and one on Bean's chest. 

We go to a gym class one day a week where the kids go barefoot.  Roo was in shorts last week and while no one was brave enough to broach the topic outright, I did catch a horror-stricken mother staring at his ankle.  I smiled and she gathered up her well-nourished, satin-skinned toddler and carried him to the uneven parallel bars at the opposite end of the gym.  Wonder if they'll be back next week? 

Ok, I'm being insensitive but it does beg the question, what am I supposed to do for the next several months (years??) until these things go away?  As a 20 pound 2-year-old boy who can't eat birthday cake, he's enough of a pariah as it is.  I can't keep him cloistered away forever.  On the other hand, I don't blame other parents for getting freaked out for not wanting their kids to contract ugly warts. I don't want to deal with them either.  We have been assured that the risk of infection is minimal.  But since our other two kids have them too, how minimal can this infection risk be?  Aside from lancing them off or burning them (neither of which is recommended for children his age) I'm not sure what our options are.  Has anyone else dealt with these?  Do I need to keep him covered and in seclusion?  How about the community swimming pool?  And I was looking forward to summer!

Dairy Trial

Last week's appointment with the "Feeding Team" was disappointing due to a critical miscommunication between the new GI doctor/food aversion/feeding specialist and me.  When we went through the basic "what's he eating?" drill, it appears as though he somehow missed the crucial part where I said that Roo drinks soy baby formula that has been fortified to 30 calories per ounce.  I swear he must not have heard that part because his advice was as follows:

• Reintroduce dairy on a trial basis (woo hoo!!)
• Change his formula to Bright Beginnings soy formula because it has 50% more calories
• Buy the book "Food Chaining" (written by said doctor, I might add)
• Bulk Roo up a few pounds and return to meet the rest of the feeding team in July once he's not so "undernourished" 

Wha????  So, I'm trying to keep my PG rating but seriously?  Bulk him up?  Isn't that why we're here?  If I could get the kid to eat, we wouldn't need the feeding specialist. 

I walked out of the appointment truly believing that Bright Beginnings must be some sort of super-fortified miracle formula with 50 calories per ounce that we had overlooked.  Of course, Bright Beginnings is a more expensive version of what we're already giving him - fortified soy formula.  It's 30 calories per ounce with roughly the same nutritional values in all areas.  Sweet. 

Call me crazy but I'm not switching his formula.  The Bright Beginnings is sweet and vanilla flavored - two things Roo loathes, and offers no benefit other than putting the poor kid through yet another formula overhaul. 

I'm allowing myself a cooldown period and then I'll broach the subject with the doctor.  Or maybe I won't.  I haven't decided yet.  In the interim I'm considering asking our pediatrician for a trial Zantac prescription because he is definitely refluxy and can't eat at all in the morning.  Today's breakfast - one bite of plain yogurt, one eighth of a strawberry and a sip of milk.  I'm full just thinking about it.

Okay, feeling a little better now.  Onto the good news.  We got the go ahead to do a dairy trial and so far it's going as smooth as Chantilly cream.  He's had real butter, cheddar cheese, a few bites of real yogurt, cheddar goldfish crackers, cheese pizza, chocolate pudding, and macaroni and cheese.  No Chantilly cream yet, but he's no worse for the wear with the new additions.  I am so happy for him.  And for us.  We have been liberated.

He doesn't love everything.  Yogurt, pudding, and other squishy stuff he's happiest smearing on the cat, but the other night be ate a whole square of pizza.  Looly and Bean cheered and shouted for him the whole time and he actually enjoyed it, I think.  I don't know if it was the cheering section or the pizza he liked more but either way, he ate a whole piece.  That's a veritable feast for him. 

The girls are so sweet and have been adjusting to Roo's new loosened food restrictions.  Several times Looly has reminded me that Roo can't have goldfish (or real cheese, or butter, etc.)  When I remind her we're doing a dairy trial she gets all smily and hugs her brother and congratulates him on his new options.  Honestly she is more of a help in this process than several doctors have been.  Bean too.  Our conversations go like this:

Bean: "No Roo eat pizza."

Me: "He's trying it tonight Maisie.  We'll see if it gives him a tummy ache."

Bean: "No tummy ache, Roo. Eat more pizza, Roo."

My sentiments precisely.

Just the Flax

About a year ago, Looly started getting scaly red patches in the creases of her elbows, on her legs, and behind her knees.  They were round and itchy with well-defined borders.  We took her to the pediatrician who diagnosed eczema.  It was a welcome relief as I'd been suspecting ringworm or a flesh-eating virus.  Her spots flare from time to time - usually worse in cold, dry winter, but we seem to be able to control them fairly well with frequent applications of Aquaphor and Vaseline. 

Roo, as usual, is another story.  As an infant, his perfect milky baby skin was tainted by crusty pink patches in the creases of his elbows.   Over his first winter, his legs were much dryer and scabbier than Bean's no matter how much we moisturized.  His skin improved that summer but the beast came back with a vengeance in the fall and hasn't left since.  Today, he has perpetual red flaky patches of skin all over his legs, as well as full blown crackly, bloody welts that plague the creases behind his knees.  His stomach and back are covered in a bumpy, spotty, rash that looks a lot like prickly heat but stays whether he's dry or wet, hot or cold.  He's constantly pulling at his shirts and pants, trying to get a good scratch.  We try to keep him covered because when he does get a hand in, he typically breaks the skin with his zealous scratching.  Not pretty.  We slather him in Vaseline a few times a day and use a steroid creme to manage the worst of it.  Rest assured no one wants Roo's hand-me-down clothing.  Most of the time he looks like a miniature auto mechanic. 

To date Bean is clear but I don't think we're out of the woods since Looly's first symptoms didn't appear until she was closer to three.  Time will tell. 

Then this winter, I discovered a couple of patchy spots on my hip and recalled a conversation I had with a massage therapist two years earlier when I was pregnant with the twins.  She noiced them and thought it looked like eczema.  I told her I don't have eczema and chalked it up to yet another malady of pregnancy.  Hmmm...

A few days ago I ran into the mother of a fellow allergy- and eczema-sufferer, at Whole Foods (where else?).  She suggested that flaxseed has been instrumental in clearing up her now 6-year-old son's eczema.  So what the hay, we're giving it a whirl.  I'm throwing ground flaxseed into pasta, yogurt, sauces, cereal, smoothies, veggies, and so far, surprisingly, no complaints.  I'm dousing cooked meat and veggies in flaxseed oil and even stirred some into ketchup.  Keep in mind you can't cook with flaxseed oil because it has an extremely low smoke point, but you can add it once food is cooked or reheated.  My kids are so used to getting everything drenched in oil or margarine, they haven't complained about this either. 

As usual, I am wary of the miracle cure for anything allergy-related but figure it can't hurt.  We'll see how it goes and I'll report back in a few weeks.  I realize now that I should have taken pictures for a before and after comparison.  Perhaps I'll do that tonight for some concrete evidence.  In the mean time, if anyone else has any flaxseed success (or horror) stories to share, I'd love to hear them!

Spring Break

Our superstar Au Pair, Wiebke, was on vacation last week, which just happened to coincide with Looly's spring break.  In the spirit of full disclosure, the prospect of five solid days home alone with my under-four brood was not exceptionally appealing.  Judge me if you will, but really, one of the best things that's ever happened to us is the Au Pair program.  Wiebke, and her predecessor, Debbie, have undoubtedly saved us countless hours and dollars in family therapy, visits from social services, and booze.  You think I'm kidding.  Sadly, come July, we will say goodbye to Vivi, as the kids have affectionately dubbed Wiebke, and move forward as a family of five, not a happy six, as we are now.  I don't like to think about it but in essence this was a preview of the rest of our lives and the thought had me terrified. 

Somewhat surprisingly we all came out of the week mentally and physically intact despite four prolifically runny noses,  three hacking coughs, and little sleep.  In our house, and many others I'm sure, sick kids mean no sleep.  In our house, it also tends to mean lots of vomit.  Fortunately, the sleep and vomit did not overlap this time around, so that was a bonus.  I hate changing sheets and kids in the middle of the night.  No matter what, it's just twenty times worse cleaning up a sobbing, stinky child in the dark in your pjs.  Minor setbacks become the apocalypse after 2 am.

As for the success of the week, Mother Nature gets credit on this one.  What a freakin' incredible weather week!  If global warming means eighty degree temperatures in Chicago in late March, I am all in.  My air conditioners will run year round.  I will drive to the corner store in my enormous gas-guzzling minivan for plastic single-serving water bottles.  I will rack up frequent flyer miles left and right.  I'm converting the recycling bin to an ash tray.  Okay, perhaps not, but I have been tempted.  How much can a few measly degrees hurt?  (Please no comments from those of you residing in low-lying coastal communities.)

Regardless of the reason, we took full advantage and played summertime.  Shorts, t-shirts, and sandals all around.  Playground, walks to the park, picnic lunches, popsicles, open windows, stories on a beach towel in the backyard.  The water table was out in full force.  It was awesome and we all had a blast.  Yeah, even me. 

Lessons learned from the week: My kids can get along for more than five minutes.   Fingerpaint comes out of silk/rayon blends splendidly.  Vaseline does not.  Drinking standing rain water from the top of a paint can won't kill you.  Shouting out the colors of cars as they zoom past is a great way to distract a couple of grumpy toddlers.  I don't mind playing restaurant for the fiftieth time in a day as long as it's under sunny skies and light easterly breezes.  Obviously, the main takeaway from this experience is that as long as we live in perpetual summer from here on out, everything will be just fine.

Preschool Nirvana

Today was parent-child work day at Looly's school.  I got to stay with her after drop off and she got to teach me how to do all of the work she does each day.  Now excuse my gush.  After all, Roo gets most of the space here so how about a shout out for my big girl, right? 

Looly goes to a small Montessori school for all you locals who might want to check it out) with just one primary classroom  for kids age 3-6 and one toddler room for two-year-olds.  The teachers are amazing and somehow manage to have 25 kids working quietly, happily, and independently throughout the room on different tasks at any given time.  The children are so sweet and respectful to each other.  The room is airy and sunlit even on the grayest of days.  There's always the scent of fresh baked nut-free muffins or cookies wafting from the kitchen and the walls reverberate the soft giggly murmur of preschoolers discussing their work. 

Looly couldn't wait to show me everything from her pink coat hanger to the soap dispenser in the bathroom.  She was distraught momentarily as I didn't have indoor shoes to change into but eventually she let it slide when I pointed out that none of the adults had changed shoes.  She made sure that I greeted all of the children and her teachers by name and reminded me to do so when I accidentally forgot someone.  My face-burying leg clinger from long ago is now little miss manners spreading good mornings, waves, and smiles to the world.  So proud. 

When it was time to work she gathered her supplies and set up her own paints and water to paint a pig.  After laying her picture to dry and thoroughly cleaning her table, she cut patterns in paper.  We colored an Easter egg together and practiced writing numbers on a chalk board.  Perhaps most impressively,she read a bag full of words to me.  No pictures, no rote memorization - these were straight up type written words on plain white cards and she was sounding them out.  She's only three and a half!  Hot, not, got, lost, and rock, just to name a few.  Last we had a lovely breakfast together with her friends and some of the other parents.  She cleared plates for both of us like a proper hostess.  I have to admit I was sad to say goodbye but Looly was more than ready to get rid of me.  Because after me, it was Mufasa's turn.  Daddy!

Happy Birthday!

Bean and Roo are two today!  This morning we went to Make a Messterpiece where the kids had a blast making a mess, I mean art.  They colored, painted, played, made bubble canvasses, and wore full rain gear to bang on huge drums full of paint in a plexiglass room.  So much fun. 

We celebrated some more tonight with make your own sundaes (coconut milk ice cream for Roo) topped with dairy free chocolate chips, fresh strawberries, crushed cookies, and sprinkles.  Happy birthday, little ones! 

GI Update

Thanks for all the well wishes for Roo's Friday GI appointment!  Overall things went as expected with a few surprises. 

As far as the GI doc is concerned, Roo's growth is following a curve.  He's not following "The" growth chart, but he is growing.  He weighed 20 pounds 15 ounces and that put him on a tiny slanting upward arc from where he was three months ago at 19 pounds 10 ounces.  Forgive me for not mentioning to the doctor that the previous weight was taken while he was naked and this one while fully clothed and diapered.  I was all too absorbed by the fact that his height has increased to 32.5 inches which is, drumroll please......officially on "The" chart.  In fact, it's 10th percentile for his age on the chart.  That's non-adjusted for prematurity, regular old 24-month old American boy height.  Yup yup.  Take that size 12-month pants!  We're moving up to 18-months...as long as we can find adjustable waistbands. 

The general consensus is that the eosinophilic esophagitis is not causing his vomiting anymore.  Unless we alter his diet drastically, which we have not, the EoE is not likely to be causing many problems at the moment.  There is no clear single cause for his eating issues and food aversion but rather a combination of EoE, regular food allergies, oral delay, reflux, and his learned avoidance behaviors. 

The recommendation is to see a feeding team.  We have a referral for a different GI doctor who specializes in food aversion.  He works as a team with a gaggle of other specialists - speech therapist, occupational therapist, nutritionist, psychologist, etc.  While Roo has seen all of these therapist types before, the beauty here is that they are all part of an integrated team.  We'll see how it goes. 

Roo will return to his old GI team for an EoE check-up and allergy testing in about six months.  Until then it's status quo for his diet - no eggs, nuts, milk, or beef, and full steam ahead trying to get him to eat, enjoy eating, keep food down, gain weight, and grow.  No problem I'm sure. 

The final surprise of the appointment was that our current GI doctor is leaving Children's Memorial.  I'm not thrilled since he's been good to us, and the fact that he is young, Indian, and has little twins of his own didn't hurt his reputation in our house.  In retrospect, however, I'm not so sure how I feel about him performing Roo's last surgery a couple of weeks after bringing his own newborns home.  Anyway, he's heading out of state to a clinic that currently has no EoE specialist.

Countdown to GI

Roo goes to the GI specialist this Friday.  So much for our 6 week challenge.  It seems we have failed miserably yet again.  He has gained a measly eight ounces in the three months since his last endoscopy and boy did we work for it!  We were doing so well there for a couple of weeks but as usual it's three steps forward, two steps (sometimes many more) back. 

He is twenty pounds.  Exactly twenty pounds.  Did I mention he'll be two next week?  All I'm hoping for now is a small, but acceptable, increase in height, since we've been accused of stunting his growth.  Okay, maybe not "accused" persay, but I wish they'd stop bringing up his shortness as a concern.  I mean, have they looked at Mufasa and me?  And technically, he is on the chart for height.  Nothing wrong with third percentile.  Nothing at all.  Besides, his pants look a little shorter, though they're gaping at the waist more than ever.  Thank goodness for adjustable waistbands or he would be sporting a wardrobe full of dresses and tunics.  At least they'd match Looly's sparkly shoes he loves so much. 

In a final effort to plump him up an ounce or two before the big weigh-in I've been focusing on some old favorites this week.  Pasta with turkey bolognese, rotisserie chicken drenched in dairy-free margarine, dairy-free mini-chocolate chips, heavily "buttered" rice, avocado in what else, olive oil dip, and strained raspberry coconut milk yogurt with scoops of soy formula stirred in.  Anyone care to join us for dinner?

Chicken pot-pie earlier this week was a hit.  As it turns out, Pillsbury ready-made pie crust is vegan and nut-free.  Very exciting news in our house.  I put it all on the line last night, however, with some citrus mahi mahi that was not well-received by anyone under age four.  Tonight it's lamb tagine, but I will safely serve plenty of oily couscous and buttery broccoli on the side.  In case of an emergency I have some meatballs at the ready in the freezer.  Keep your fingers crossed.  We have 45 hours and counting to give it our all and keep that dreaded feeding tube at bay.  Chants, vibes, wishes, prayers - whatever you've got to encourage "no more vomit!" are greatly appreciated.

Reflux too?

The somach flu, sloppy and violent as it was, went as quickly as it came, with Looly its lone victim.  She was a trooper.  Countless hours of PBS, snuggles from Nana and Grampy who were visiting, and a get well soon balloon surely sped along her recovery.  I'm still trying to figure out how Bean didn't succomb, given the sheer number of times she reached her hands into Looly's stainless steel throw up bowl.  Nice.  While Roo struggles, her immune system is ironclad.

Thrilled as I am the Roo didn't get sick, I'm now on a quest to figure out why (why oh why!) he won't stop throwing up.  He's off the suspected allergens (milk, eggs, nuts, beef) and the improvement was been dramatic in the past three months.  He is more active, more comfortable, more enthusiastic about coming to the dining table and generally jollier than he ever was before.  All good, right?  His clean scope in November indicated that he was indeed on the mend.  So why the heck won't he eat, keep his food down, and by all means, gain some weight? 

He ate a great dinner Friday night, drank a super cup of fortified soy formula, got in his pajamas, brushed his teeth, read stories, threw up vast quantities of soy milk, hotdog, veggies, and rice for a few minutes, then was perfectly happy to get his pj's changed and head off to bed.  Repeat the scene Sunday night with chicken, broccoli, and french fries.  I am so frustrated.  Is he still allergic to something or is it *just* gagging from the oral sensory delay? 

Or is it reflux?  He does not seem uncomfortable until the moment before he vomits.  As I'm sure I've made abundantly clear, he does not love to eat, but he does not seem uncomfortable while he's eating anymore either.  In general it's in the evening, after dinner, while drinking or soon after drinking and by some evil twist of fate, he's much more likely to vomit after a good meal than a poor one.  Vomit.  Everywhere.  Then, he's off to get a towel to clean up after himself (breaking my heart), and happy to change his clothes, go play, take a bath, go to bed, or whatever else is planned.  I know it's not a behavioral vomit.  He's not doing it to avoid anything.  Crying makes it worse - or more likely to happen.  A runny nose is our worst enemy (after peanuts and eggs).  I am so confused.  And so tired.  Ugh.

Onto the Stomach Flu

Looly was taken by surprise this morning and has been feverish, writhing in pain, and whimpering ever since.  Poor little munchkin. She is miserable and we've yet to turn the corner.  The rainbow of mini-popsicles I got for her seemed to help for a moment but were a mistake.   Now I'm keeping my fingers crossed for containment. 

But, Roo and Bean ate a good lunch for their Nana this afternoon while I huddled on the couch with Looly.

Phlegm Fest 2010

We had a good run going for a while there but the runny noses returned with a vengeance this weekend.  You know the oozy, droozy, constant flow that leaves that little divot between upper lip and nose (philtrum - if anyone's wondering) chaffed and raw.  We've got it here times three.  Sure there are worse fates than the common cold but the frequent gagging that accompanies Roo's runny nose is not helping our cause at all.  He's lost a few ounces and we can't seem to keep him properly hydrated because he coughs and chokes while drinking or immediately afterward. 

So I'm wondering, does anyone else have a phlegm gagger?  Is this a common kid thing or are we just especially fortunate in the vomit department?  If it's not one thing it's another it seems...

Lucy's at Starbucks

Since my daily trek for coffee is absolutely required to avoid fits of foot-stomping, hair-pulling, and whining - all mine of course, my children are intimately familiar with Starbucks.  They frequently flop a shopping bag over one arm and scamper toward the front door asking me for my coffee order in our version of play shopping.  Looly whips up grande non-fat lattes and triple caramel machiattos on the pink plastic kitchen stove.  Bean and Roo know no greater object with which to whither away fifteen blissful minutes in the stroller than a green plastic splash guard.  Yeah, we're regulars. 

As the kids have grown, they're no longer satisfied with Mom's coffee run being just for Mom.  They've come on strong with ever-increasing demands of their own. 

Looly: "I want a vanilla milk."

me: "You just had milk."

Looly: "Can I get a scone?"

me: "Do you know what a scone is?"

Looly: "No."

me: "Why do you want one if you don't even know what it is?"

Looly: "I'm dying to find out!"

How can I resist such reasoning? And honestly, who am I to argue with my Starbucks Black Card in pocket and steaming cup in hand?  So imagine my delight that Starbucks is now offering a selection of milk-, egg-, nut-, and gluten-free cookies!  They're called Lucy's and they're not half bad.  The cookies are a bit crisp, so Roo just sucks on his more than actually eating it.  The real beauty is that now I can satisfy the girls with "Starbucks snacks" and not worry about who left theirs in the stroller, or who dropped crumbs that might migrate to Roo's mouth somehow.  He can scavenge for bits and pieces all he likes and it's perfectly safe.

Week in Review

Happy Valentine's Day!

We boasted a relatively successful week.  Tacos, pork chops, and pork/tofu fried rice all received glowing reviews from the articulate members of the family.  The little ones took bites so I take that as two additional thumbs up.  The lemon-dill halibut was popular with the adults, but Looly refused to touch hers.  Looly ate a few bites by force and Roo protested the best way he knows how, by vomiting his back onto the table.   

I'm proud to report that in the continuing effort to expand our allergy-free horizons, I whipped up a hefty pot of vegan potato leek soup last night.  It was pretty good, though I did add some grated Parmesan and a few splashes of Tabasco sauce for the grown-ups.  Fortunately Looly can't read this because I told her it was cheese soup since she doesn't like potatoes.  She stirred in some broccoli and claimed it was just like Panera.  Uh, thanks.  I think. 

Tonight I made falafel and tabouleh which went over better than I anticipated with the kiddos.  Looly actually liked the tabouleh and ate some of her falafel.  Bean, my carb girl, loved her pita bread and Roo choked down most of one whole falafel and a few diced tomatoes.  The big hit, however, was the chocolate fondue for Valentine's Day dessert! 

Still on tap for this week...barbecue chicken, pasta with meatballs, turkey burgers, and one of my favorite (easy!) standbys, rotisserie chicken with ginger-salt dip, edamame, and brown rice.

Good News Bad News

The good news is Roo hit the 20 pound mark on the scale Monday night! We've been anticipating this milestone for oh, I don't know, 14 months now, so this was huge. In all fairness, we weighed him at the end of the day, after drinking several ounces of milk, and the scale teetered between 19 pounds 15.5 ounces for several seconds before finally settling at a beautiful, perfectly round 20.00. Still. So proud of the little guy.

Disappointingly, the afterglow was short-lived.  He's throwing up again and needless to say, the 20 pounds are no more.  It started a little over the weekend, a couple of spit up episodes early this week, then a full-fledged vomit last night, again after breakfast today, etc.  So it goes. 

To complicate matters, I can't think of a single new or contaminated food he's eaten lately, but with our infrequent floor sweeping, who knows for sure. He has a runny nose, which tends to make him gag when he eats and drinks or then again, maybe it's the other way around. Perhaps he ate something that's giving him the runny nose. Now the best we can do is wait to see if his eczema flares to verify my hypothesis of an allergen exposure. Good times.

Last but not least, the night waking is intensifying.  Last night he was up often -drinking milk, crying, contorting, and eventually vomiting.  The two of us finally rendezvoused in the guest room for a few hours of unrest.  I can't figure out if it's the recent transition to a toddler bed, a stuffy nose, an irritated esophagus, stomachache, or a combination of everything that's waking him up and making him sick.  Regardless, we are both surly today.

Menu Planning

Each week I plan our dinner menus. I've been doing this for years, since long before we had children. I have a much loved green binder full of magazine tear-outs and photo copies of hit recipes from the last ten years. My green binder is not getting much play these days. Who knew how central a role both cheese and nuts played in so many of my old favorites?

In my abandoned stash I have a great slow cooker recipe for Thai peanut pork stew. I make a mean feta and spinach tarte. And I'm dying to make this gorgeous, rich flourless chocolate cake for Valentine's Day but will save it for Mufasa's birthday instead. When it rolls around the first week in March I will pour seven ounces of molten dark chocolate over eight freshly cracked eggs, a splash of amaretto, and whip it into a frenzy without the tiniest bit of guilt that Roo can't have even a taste. We'll savor it once he's in bed and throw away the sponge when the dishes are done. Don't worry - the kiddos will get their turn with dairy and egg-free cupcakes a couple of weeks later for the twins' birthday.

These days the menu planning is about necessity rather than experimentation. Instead of my old green binder, I've been relying on my own ingenuity and a couple of decent cookbooks that address Roo's allergies. Unfortunately the cookbooks leave a little to be desired in terms of creativity. What's to Eat? and it's sequel, What Else Is to Eat? both by Linda Marienhoff Coss, provide quick, generally family friendly recipes that are completely milk, egg, and nut free. These have been helpful and were a great starting point when we first received Roo's diagnosis and I was facing the grocery store with much trepidation. The recipes are largely made up of what my Indian husband affectionately refers to as "white people food" - meatloaf, roasts, sauteed chicken breasts, homemade barbecue sauce, tuna salad, you get the idea.

Now that I'm starting to get more comfortable reading labels, substituting, etc. I'm getting a little bored and while they've been kind enough not to shout and pump their fists in protest, I imagine that everyone else in the family is too.

So, I'm hereby making a commitment to experiment more. I vow not to fear the dreary box of egg replacer that is lurking in the recesses of my pantry. I'm opening my heart and my oven to lamb in all its various forms. Rice cream sundaes? Why not? Hominy? Here I come. And really, who doesn't appreciate the sheer versatility of polenta?

Admittedly, this week's menu is rather bland, but will provide a glimpse of how I've stagnated at the moment. I hope to expand our family's taste repertoire over the next several months, while continuing to increase Roo's caloric intake without poisoning him. Yikes!

Here's the week in a nutshell:

Saturday: Chicken tacos were a huge hit. The kids loved all the colors (tomatoes, avocado, black olives, lettuce, chips, salsa, etc.) and everyone ate well, including Roo. Major success!

Sunday: I took a pass on cooking due to a Superbowl party and lots of snacks. The little ones ate leftover taco meat with corn and bread and butter when we got home. Pathetic, perhaps, but it is what it is.

Still to come...

Monday: Pork chops, brocolli, and hashbrown potatos
Tuesday: Leftover pork and tofu fried rice using Trader Joe's prepackaged vegetable fried rice (love it and it's vegan!!)
Wednesday: Lemon-dill halibut, brown rice, edamame
Thursday: Chicken breasts, corn and black beans, couscous
Friday: Date night! Kids will eat leftovers or chicken nuggets and fries, or some other equally deplorable (and easy) option.

Here's hoping for healthy appetites.

6 Week Challenge

Roo had a weight check this morning at his pediatrician's office. While his doctor might have been slightly less than enthused at his gaining 5 ounces in the past 2 months, I was ecstatic. The little guys tipped the scales at a whopping 19 pounds, 15 ounces...so dangerously close to 20 pounds I let out a whoop and raised my hand to high-five the nurse right before she furrowed her brow to let me know this was not what we were hoping to see.

Fortunately I wasn't the only one who embarrassed myself. Bean wailed hysterically throughout the entire appointment despite the fact that she didn't even need to get undressed.

Roo was a great sport but as soon as we were out of there he proceeded to fill his diaper with what surely constituted more than a few ounces. I didn't care. It was in him at one point and my boy might hit 20 pounds before he turns two. Rock on, Roo. Rock on.

His next appointment is with the GI specialist on March 12. The official plan is to continue to keep him off all the dairy, eggs, nuts, and beef, and to work on his food aversion as we've been doing for the past couple of weeks. We're all anxious to see this magical catch-up growth everyone keeps talking about. We have six weeks to bulk him up and really wow his EoE team at Children's Memorial. I'm game. I hope he is too.

Despite all the good news we did have one minor setback this week. We have these fancy European Stokke highchairs because they were the only type we could fit three of at our kitchen table back when all of the kids needed them. Anyway, they feature a removable plastic rail for babies and we've been a bit lazy about removing them. Lately both the twins have taken to climbing into their chairs on their own using the plastic rail to hoist themselves up. It's a precarious maneuver for sure but the physical challenge seemed to make them happy to come to the table so we let it slide. Yesterday, Roo had an accident. While climbing into Bean's chair he got one foot stuck in the straps, lost his grip, and you can imagine the rest. Major tear-fest that ended with the regurgitated contents of his stomach on our kitchen floor. So, off come the rails. My babies are growing up, even if they're not exactly "growing".

And this weekend...big kids beds. Wish us luck.

Poor Eaters

Book review time.

A few weeks ago I searched for books on the topic of food aversion and didn't find much. After reading a couple of enthusiastic reviews I doled out the 20 bucks for a stuffy looking paperback called Poor Eaters by Joel Macht, Ph.D. My expectations were checked by the amateurish geometric cover design and the fact that it was published almost a decade ago, when EoE cases were far and few between. If our pediatrician, pediatric GI specialist, nutritionist, and speech therapist couldn't give us the magic formula to get Roo to eat, how could this old book possibly help? Well Mr. Macht, please accept my sincerest apologies! Poor Eaters might just save us from the g-tube yet.

To be honest, I hesitate to write this entry for fear that the progress we've made in the past couple of weeks will suddenly shatter if I dare call it that - progress. Still, we've seen changes in Roo in the past 10 days that are more encouraging than anything we've accomplished in the past 10 months. He's eating. Not always enthusiastically, but he's eating. In fact, I think he's even bulked up (gasp!) a few ounces. 

I should mention that the book emphasizes eliminating any physiological issues related to eating before attempting any of Mr. Macht's techniques. For us this is an ongoing struggle. We think we've identified the allergens that affect Roo's esophagus and have eliminated them. He's off all nuts, dairy, eggs, and beef. A clean scope (upper endoscopy) at the end of November, indicated that our dietary changes were working but we are still careful when introducing any new food. And he still surprises us with a projectile vomit now and then so we just don't know for sure.

As is turns out, there's no magic formula. We were already doing many of the suggestions in the book - using contingencies, finding the success points on which to build, ending meals on a positive note, etc. Somehow tweaking our methods, having a clear, measurable path for progress, and being able to relax in knowing that other children have come through this has made all the difference. So thank you, Mr. Macht. Thank you.

Beyond Picky

I have been reading a lot lately about picky eaters. I've heard many stories from other parents about their problem eater kids who refuse entire food groups, those who dissolve in a puddle of tears at the sight of vegetables (any vegetable!) and even one who subsisted for an entire year on grilled cheese sandwiches, blueberry yogurt and starfruit. "I swear," his mother assured me "it gets better." Well I certainly hope so. The thought of my son entering the junior high boys locker room at his current 19 pounds and 30 inches is a bit worrisome.

After all this reading, the stories, the sharing...I sympathize, I do. No one feels good that their child won't embrace veggies. Nobody wants to fight over the shred of cheese that inadvertently contaminated the plate of otherwise perfectly acceptable pasta and marinara sauce. Let me assure you, however, that Roo's eating issues go way beyond picky. One blueberry, sans skin, does not a breakfast make. Unfortunately until about a week ago, that was a typical meal for Roo. And that one blueberry? It took effort to get it in him.

I imagine there are others out there dealing with severe food/eating issues with children of all ages. The failure to thrive kids. Those who cringe at the sight of a spoon. The g-tubes. In fact I KNOW that you are indeed out there. But beyond our medical team of a nutritionist, GI doctor, and speech therapist who all specialize in eosinophilic esophagitis, I have had a heck of a time finding resources and support for dealing with more generalized food aversion in young children. So here I am.

Feeding Frenzy

I used to love to cook but this whole thing is wearing on me.

My husband, Mufasa, is sneaking cold cheese curds at the kitchen counter and my 3-year-old daughter is in tears over a denied request for a peanut butter sandwich. The fact that it's almost dinner time has nothing to do with it. My 22-month-old son, Roo, has severe food allergies. No peanut butter for Roo. No cheese curds either.

After nine excruciating months of unexplained food aversion, weight loss, vomiting, and frantic night-waking, Roo was diagnosed with Eosinophilic Esophagitis (EoE). Simply put, EoE is an allergy that causes inflammation in the esophagus to the point that food can become lodged there. The worst part is that my baby suffered silently for months, always hungry, yet unable to eat due to the burning in his tiny throbbing chest. The good news is that now that we know, we're dealing with it.

Roo's EoE is food-based. He follows a strict elimination diet including no traces of dairy, eggs, nuts, or beef. Thankfully the diet seems to be working and we are thrilled that he hasn't needed more invasive measures such as tube-feeding. Still, the impact his diet has had on his appetite and our family in general is tremendous.

No more peanut butter sandwiches for my preschooler, no weekend breakfasts out at our favorite dive, no macaroni and cheese, no more “real” cheese at all. This last bit is particularly difficult for my husband who is pre-diabetic and until recently, considered cheese the mainstay of his diet.

As the daughter of a chef and a restaurateur, these concepts are completely foreign to me. I like to cook. I love to bake. I live to eat. My own childhood was spent napping under the candy counter at our family's pizza shop, baking peanut butter cookies with my mother, and sticking my fingers into all sorts of mysterious and no doubt egg-laden sauces.

Through both of my pregnancies I worried about all sorts of nightmarish scenarios, some completely rational, others not so much.  I lost sleep over the prospect of scalding bath water.  I had visions of inadvertently poking a sharp object through the soft spot on the top of my newborn's head. I feared my own borderline childhood obesity would manifest in my children. I suspected each smiling store clerk of being a knife-wielding maniac who cut babies out of pregnant abdomens.  You get the idea. Never once did I fear that I wouldn't be able to nourish my children. I had trained my whole life for this. I couldn't wait to nurse and eventually to make my own organic baby food.

I have cabinets bursting with cookbooks featuring luscious frittatas, creamy stews, and cakes iced slicker than seal skin. Food is my gig. I never dreamed that I would struggle to provide healthy, delicious, satiating meals to my entire family and the fact that often I cannot is crushing. I pour over allergy-free and diabetic-friendly cookbooks looking for that one allowable, nourishing, crowd-pleasing meal. Thanks to frequent substitutions and specialty grocery stores, I'm getting better and learning as I go. For now, however, I assure you I have the best fed garbage can on the block.