Why we don't visit more

Along the lines of my recent post on declined birthday party invitations, we don't visit much either.  Friends, family, near, far, it makes no difference.  We are just not much for traveling these days whether it's across the country or across town.  It's not that we don't like you.  In all probability we really truly do.  After all you're sweet, charming, so very generous to invite us in the first place and (blush) you read my blog!  

But here's the deal.  Dinner parties stress me out.  As a fully indoctrinated Midwesterner the rules of politeness prevent me from coming right out and saying it, but most of the time, going anywhere there is food with my kids just plain sucks.

The preparation - yes, we feed them dinner before we leave even if the invitation says 3 pm, the packing (epi-pens, Benedryl, Tupperware or other vomit catching device, full change of clothes for Roo, soy milk, safe snacks, safe treats to deploy in case of meltdown, clean shirt for me, 2nd safe dinner to eat on location, the list goes on), the worry (Are there nuts in the house?  Does the pasta they made for the kids have egg in it? Do you still have the package from those crackers?), and the unknown - my kid could burst and vomit strawberries all over your plush white carpet at any moment.  It's just a lot to deal with.

Then there's the weight problem.  It doesn't matter what's for dinner, how adorable the plates are, or anything else.  Roo simply does not eat well away from home.  Maybe that's most kids, I mean, parties are supposed to be prime time for grabbing a couple of bites here and there and topping it all off with a yummy treat.  But that doesn't fly for Roo.  And unfortunately, he doesn't make up for it with a yummy calorie rich party dessert the way other kids might.  He wants a Dum Dum lollipop and a cup of water.  One poor meal for him means lost ounces.  And too many of those lost ounces are when the doctors start talking about g-tubes and strict elimination diets. 

So this is my confession.  Please forgive me for being an ungrateful guest.  I am trying.  I know it's not fair to always come to our place.  I know we've got to learn how to "live" with these issues, but in the interest of keeping my blood pressure intact, please do allow me my baby steps.  And to all of you who keep inviting us anyway and strive to keep things nut-free and Roo-safe when we're around, who trudge to our place through both snowstorms and heatwaves from near and far, and don't roll your eyes when I read every single one of your ingredient packages for the 5th time, it means the world.  Thank you!

Thanks for the invite, but...

I just received an invitation for a fun 3-year-old birthday party for one of Roo and Bean's little school friends.  The birthday boy is a sweet kid and I like his mom a lot.  Several of their friends will be there.  It's not too far away.  Doesn't interfere with nap.  Super.  Except that it's at an ice cream parlor.  A nut-crusted, egg-laden ice cream parlor.  So, as usual, we politely declined.

Yes if I really wanted that mom of the year award I could probably make this happen.  The routine would go something like this:

1. Call J's mom and warn her of Roo's allergies.  Plan to accommodate him while causing least disruption possible at party.  Reject her compulsory offer to provide a "safe" treat and tell her I'll handle it. 
2. Call ice cream parlor and ask about ingredients in ice cream as well as procedure for accommodating allergies (for example, changing gloves, opening fresh containers, using clean scoop, etc. to avoid cross contamination)
3. Bring back-up safe treat even if person on the phone promises on grave of loved one that none of their ice creams contain a trace of egg, nut, apple, peach, or beef (gross)
4. Arrive on party day feeling like my pants are lined with barbed wire at the prospect that a stray peanut or swipe of butter pecan accidentally migrated onto the table where Roo is sitting. Scrub table and chair with antibacterial wipes.
5. Ask person at counter AGAIN about all ice cream ingredients (usually we just stick with vanilla but it often has eggs in it  so we need to be flexible).  Possibly find a "safe" flavor. Ask for a fresh container to be opened, clean gloves, and clean scoop.  Allow irritated glares of busy counter staff to bounce off my skin like rubber balls.
6. Sing Happy Birthday to J
7. Hover over Roo as he eats exactly 3 tiny bites of ice cream, continuously examining his legs and belly for first signs of a reaction, and completely ignoring Bean, who by this time has surely climbed into her own oversize bowl of mint chocolate chip and is swimming in the greeny goodness. 
8. Leave party as quickly as possible to avoid the potential vomiting that's likely to occur after eating, allergies or not. 

So, yeah, I think we'll sit this one out.

Molars and more

Roo is back at speech therapy.  We've been fortunate to squeeze him in for one visit per month for now, down from the once a week standing appointment he used to have.  After a lengthy letter writing campaign from our Pediatrician, GI team, ENT, and our Speech Therapist, Cigna has agreed to cover Roo's feeding therapy after all.

All I'm going to say is this: Hey, thanks, Cigna, for coming around and seeing the light and not making us retroactively responsible for several thousands of dollars in therapy fees, but next time, it would be super helpful if we didn't have to cancel all our upcoming appointments and revisit the waiting list while you sort your sh*t out.  Now we fight to get him back on the regular schedule. 

In other oral news, Roo is finally getting his two-year molars.  One is through the gums, one is visible and starting to poke through.  The two on top are yet to come.  Yes, he'll be three and a half in September, my little late bloomer.  At least now we know he has more teeth.

Voting for CURED

I'm not usually a sweepstakes kind of girl, but this one is near and dear to my heart.  On August 27 Vivint Gives Back Project will award 2.5 millions dollars to various charities.  

One of the charities in the running is CURED Foundation - a fantastic organization that has been working tirelessly to raise money for research on eosinophilic disorders since long before Roo was diagnosed.  They work closely with the Cincinnati Children's Hospital, which is at the absolute forefront in research on eosinophilic disorders, and where both Bean and Roo are currently participating in a twins study on EoE.  So, obviously, we would be thrilled to see them receive this generous donation.

Basically, the public votes for the next several weeks for their favorite charity.  On August 27, the charity with the most votes overall, will receive $250,000.  In addition, each charity that receives the most votes in its region, will receive $100,000.  Not too shabby, eh?

The top charity at the moment is located in CURED's region (central region) which means that if we can maintain enough votes to be in 2nd place in our region, CURED will receive the $100,000! The problem is, we're currently in 3rd place, but it's by approximately 30 votes?! Just 30 votes are separating my boy from a $100,000 donation for CURED foundation.  So please vote if you can.  Daily if you'd be so kind.  Yes, it makes you login to Facebook but the whole process takes 15 seconds.  Just click on the link below to get started. 

Vote for CURED - Vivint Gives Back

Summer break

In the event that anyone is still out there reading this after my 2 month hiatus, I'm still here.

I've received a few concerned phone calls and emails asking if things are either really really good or really really bad with Roo and if that's why I've been MIA for a while.  So to clear up any doubt, things are neither terrible nor great with us, mostly status quo, in fact.  It's just, the kids are on summer break.  And I've been trying to work out.  And honestly, that's about all I seem to be able to handle on top of the day to day.  

It's pathetic and perhaps selfish too, but I'm in a good workout groove and I'd like to stay here for while.  The downside of course, is that after warning the children repeatedly to interrupt me only in the event of a true emergency while I work out, then requesting further compliance so I can squeeze in a shower, it just seems terribly unfair (and unrealistic) to expect them to leave me alone for another half hour so I can answer emails and update the blog.  So I haven't.

What we have been doing instead is our own version of summer school, or as they dubbed it, "Mama School".  We're covering all kinds of topics from Spanish language to circuit training.  Turns out 3 and 5-year-olds are wired for circuits.  They adore 30 second intervals.  It goes something like this:

30 seconds each

• Frog jumps
• Sprint around cones
• Jumping jacks
• Crab walk
• Forward rolls
• Rest/water break
• Do it again

Don't worry, I'm not a drill sergeant.  We're having fun in plenty of other ways too.  Pool trips, playground, art projects, nutrition lessons and cooking class (strawberry picking followed by strawberry fruit leather making was a big hit), Simon Says in Spanish, etc., etc. We're trying something new every day and for the most part everyone seems pretty happy.  Love summer.

Medical Necessity

Well, that whole what to do about speech therapy question might get cleared up for us after all.  Just got a call that our insurance hasn't covered any of Roo's feeding therapy since the beginning of February.  They covered it up until February "in error" and fortunately they have not asked for their money back.  Yet.

Apparently Roo's feeding therapy is neither restorative nor medically necessary and to top it off they claim he has no underlying conditions which should impair his swallowing.  Like say, eosinophilic esophagitis or the laryngeal cleft the ENT found.  Forgive me but I'm about to send my puking, gagging, failing to thrive, hour and a half to eat a decent meal kid over to their offices for a quick demo.

We're appealing the decision but at $400 a pop for weekly sessions, this isn't going to be cheap if we lose.  If you need me today I'll be busy gathering letters of medical necessity from our slew of doctors.

Feeding Therapy

Our speech therapist thinks Roo has made big progress in the past few months and isn't sure she needs to see him anymore.  I agree that he often eats well in her office.  All the games of Connect 4, sticker charts, balloon timer, and the pretty young speech therapist provide exactly the level of incentive he requires to finish a decent meal.  She believes that at this point it's largely a matter of keeping him motivated.  He can eat.  He just chooses not to most of the time.  And she's right. 

But I'm torn. He can eat when he sets his mind to it.  He crunches up Dum Dum lollipops like nobody's business.  He can eat raw carrots, Ruffles potato chips, pork, bacon, grape tomatoes, and all kinds of other foods that require ample chewing.  But without fail, he still gags on yogurt.  Muffins, most cookies, and soft breads, pancakes and the like are still off limits.  And while we know that his esophagus is clear right now, he still threw up after a single bite of ice cream with sprinkes this weekend.  My theory is that it was a textural issue...the mixing of tiny crunchy pellets along with soft, cold, mushy ice cream.  That kind of stuff still happens a lot.  

If we are to believe the scopes, GI's, ENT, and speech therapist, there's not really a physical cause remaining at this point for the frequent vomiting and general food aversion.  He still takes Prevacid because I think with or without the EoE he suffers from reflux too. I'm thinking of continuing the speech because I don't really know what else to do with him. 

Props for Grampy

Budesonide, or Pulmicort, if you prefer, is an asthma medication.  It comes in individual packets or respules dissolved in a couple of milliters of liquid that are meant to be used in a nebulizer specifically for inhalation to treat, well, asthma, of course.  For eosinophilic esophagitis, the protocol is a bit different.  You have to drink the stuff.  To make it more palatable and stick-to-your-esophagus thick, GI specialists the world over have recommended mixing it with a few packets of Splenda to create a sickly sweet sludge-like consistency which is supposed to adhere to the esophagus walls, thus maximizing the effectiveness of the steroid.  Anyone out there ever eat a whole packet of Splenda?  How about five at a time? 

A few months ago when we were first looking at a budesonide trial for Roo, we were dreading it.  See, we were the teeniest bit skeptical that we could get this kid, who at age three, has yet to ingest a dose of Children's Tylenol successfully due to a hyper-sensitive gag reflex, to swallow five packets of Splenda mixed with medicine.  Not once, but twice a day for eight weeks. 

As I was hemming and hawing about how to make this happen, and whining just a bit perhaps about the unfairness of it all over the phone to my parents, my dad, Grampy to Roo, Bean, and Looly, devised his own brilliant solution.  Sorbet.  Roo can't get enough.  It's thick, tangy, sweet but not too sweet, icy enough to dull the flavor, has few ingredients, and let's face it, way more fun to eat than Splenda.  After one horrifically unsuccessful attempt with the Splenda, I nervously approached our GI team with Grampy's idea and to my surprise they agreed to let us try it.  Roo literally ate it up.  For what ended up being more than ten weeks due to scheduling difficulties with the scope. 

And get this, as it turns out, our GI team is now passing along Grampy's new recommendation to other families starting on budesonide for EoE.  Turns out sorbet is the new Splenda.  And Grampy is the Man!

Free and clear...for now

The biopsy results are in and Roo is officially a responder!  Following a ten week trial of drinking budesonide respules stirred into a tablespoon of lemon sorbet two times a day, his esophageal tissue is healed up and eosinophil-free, at least for the moment.  Psyched is an understatement.  Apparently, about 70-85 percent of people do respond to the steroid treatment, but can you blame me for not being terribly optimistic?  This is the best news we've had for a while.

He's off the budesonide now until symptoms reappear (not that they've exactly disappeared, but more on that another time).  Plans for a feeding tube are on hold as he's put on a little weight.  In fact, he jumped up slightly on the growth chart.  He's still below first percentile for weight, but he's closing in a bit.  He hit 25 pounds for the first time this week!  After more than eight months of stagnation, he grew almost an inch and his height is back tracking around the 5th percentile.  We're starting to retire the size 12-18 month pants.  And as if that's not enough, one of his two year molars is finally peeking through the gums.  Yes, he's nearly 38 months and just getting his two year molars.  Bean's had hers for about a year now. 

We're keeping dairy in his diet bringing his list of forbidden foods is down to:

• peanuts
• tree nuts
• eggs
• apple
• peach
• beef

Now we wait and see.  His symptoms will probably return as the allergens we haven't yet discovered continue to eat away at his esophagus but we can put him back on the budesonide then.  He's still vomiting sometimes, doesn't have a huge appetite, loathes many various textures in his mouth, probably has some environmental allergies, and obviously still struggles to gain weight but this was a big step.  I'll be enjoying that champagne now.

Cautious Optimism

Surgery on Friday was a raging success. In terms of Roo waking up after anesthesia, coming home without having to be admitted to the hospital, and no Stridor-induced trips to the ER, things couldn't have gone any better. 

On the EoE front, the physical appearance of his esophagus was everything it ought to be - clean, bubble gum pink, free of white plaques and furrows, and best of all, remember those pesky little bumps and polyps that had us on edge for three months?  They are no more!  We're still waiting on the biopsy results which should be back some time this week but the physical evidence was encouraging.  Ultimately the biopsies will tell the full story but it's looking like the budesonide (aka Pulmicort) might be working for him.  I still don't quite believe it.  As we know, shoes tend to drop around here when we least expect it.  I'm not popping any corks until the official results are in, but there is a little ginger in my step that hasn't been there in some time. 

In addition to his regular upper endoscopy, Roo also underwent a bronchoscopy this time around.  In a strange twist of fate I almost forgot all about the scope results because I was sure that the budesonide wasn't working.  I was more focused on the bronchoscopy first because he'd never had one and second, because the Otolaryngologist or ear, nose, and throat specialist (yes, we've added yet another specialist to "The Team") warned us that Roo would likely need to be admitted to the hospital if he wasn't breathing well following the procedure.  The rationale was that he's already had lots of breathing issues - namely acute Croup and Stridor - following his regular scopes, and that a bronchoscopy would cause even more trauma to his airway thus increasing the croupy response.  Fortunately that didn't happen and now we think we now why.

As it turns out, Roo's airway is especially small.  He's obviously part Lilliputian to begin with and based on his actual stats of a whopping 24 pounds and 34 inches, the ENT said his airway is about 50% of the size he would expect it to be.  How this comes as a surprise I'm not sure.  I mean, his entire neck has the girth of a garden hose.  Regardless, the breathing tubes used during his previous procedures were much too large and essentially tore up his wind pipe...hence the coughing up of blood and tracheal spasms.  But seriously, is Roo the smallest 3-year-old they've ever seen in the Children's hospital?  I'm once again left wondering how this went unnoticed by the anesthesia team in a hospital devoted specifically to very sick children.

Well, enough of that because the reality is that no matter how we had to find it out, I'm thrilled that there's a reason for his bad reaction to anesthesia that doesn't involve another allergy or a tumor.  Things could be much worse.  And now they know what size tube to use.

So, just waiting for the phone to ring.  Not chiming any victory bells yet but the mallet's in my hand.

Praising Francesca and Chipotle

As you might imagine we rarely eat out as a family.  Far too many restaurant meals have ended in a table full of vomit to fully enjoy the experience.  Lately, however, the urge for some normalcy and let's be honest, a break from the kitchen, has been looming.  Gladly, Roo's on an upswing at the moment and seems to be tolerating food unusually well.  Time to capitalize on our good fortune, because who knows where we'll be after the next scope. 

Saturday night on a whim we headed to one of our favorite and historically most child-friendly and allergy-accommodating restaurants,  Francesca's Al Fiore, in Forest Park.  Now despite the awesome pizza, this is no pizza joint.  With white tablecloths, real napkins, great food, and a fully stocked wine cellar, it was almost like date night, plus three.  As usual the staff was exceedingly patient and understanding about our plethora of questions regarding the ingredients and the waitress event went so far as to declare that we have most charming children.  They were remarkably well behaved and quiet, almost like we do this all the time.  Ranked among our top 3 meals out as a family.  Ever.  Hands down.   

So today while Looly was on a field trip leaving the little ones and me to run errands, I was struck with a sudden surge of bravery.  Lunch out.  Just the three of us.  While I realize that grabbing a quick lunch with the kiddos is commonplace for many families, we are not one of them.  On top of the constant threat of anaphylaxis, have I mentioned that Roo vomits in restaurants?  Take it from the lady who travels with an empty tupperware container and a dish towel in my purse, just in case.

Bring on Chipotle.  Did you know that Chipotle is a completely peanut and tree nut-free establishment?  I didn't until all too recently.  No egg either.  Their allergy information is super accessible and again, the staff was well-informed and incredibly accommodating.  No grimaces or sighs as I asked my slew of questions.  The lady even asked me if I'd like her to change gloves because I had asked about dairy cross-contamination.  Fortunately, with Roo's dairy trial underway, he had plenty to choose from.  Chips, guacamole, cheese quesadilla, rice, black beans, and more shredded cheese on top.  Technically he could eat the chicken and carnitas too, but they were a little spicy for both kids.  Now if that meal can't put some weight on him, I don't know what will.  Of course, if we lose soy next week after the scope, we're totally screwed.  But today is a good day.  

This oughta sum it up...

Warming Up

After more than a week without heat, we've finally ditched the layers and freed ourselves from a fixed family huddle around the gas fireplace.  For several days we rarely left the confines of the five by eight foot rug directly in front of our sole heat source.  We played board games, held concerts, read books, had "picnics" and did periodic jumping jacks to keep warm, while outside temperatures hovered in the low 30's.  It actually wasn't all bad, especially for Looly Ingalls Wilder.  She enjoyed the snuggle time and imagining just how cold that Long Winter really must have been for Laura, Mary, Carrie, and the gang.  In any event, the boiler is rolling again and the kids are down to one pair of pajamas at night. 

Oddly, the deep freeze seems to have agreed with Roo.  He's been vomit-free for over a week and has eaten surprisingly well.  Well, maybe not well in the traditional sense of the word, but not bad for him...few bites of breakfast, fine lunch, adequate dinner and a little milk for consecutive days.  A good day is always good but I sort of hate when this happens because it starts to get my hopes up that he could maybe, possibly, perhaps, just the tiniest bit be improving.  But, we've had these happy spells before so I'm not holding my breath for any miracles.  But I am trying to enjoy the good days while they're here.  With the next scope fast approaching, they won't last long.  April 15.  Mark your calendars.

Happy Birthday

So, I admit it.  I've been avoiding the blog.  It's not that I haven't had anything to say.  In fact it's rather the opposite.  Anyway, I'm so exhausted my left eyelid is twitching as I look at the screen but I'm sucking it up, along with a Starbucks iced coffee, in honor of my 2 brand-spankingly new 3-year-olds.

Yes, Roo and Bean are 3! Presents at the breakfast table were a big hit.  Thanks to Nana and Grampy for St. Patrick's Day head gear and embroidered t-shirts but it was downhill from there.  Only a couple of kids showed up to preschool to celebrate with Bean and Roo and share in their hand-dipped chocolate-sprinkle coated pretzels.  Now I think I know why. 

Poor Bean developed a killer earache immediately after lunch.  Then the fever showed up.  Tylenol did little to ease her pain and the poor kid had absolutely no interest in her presents.  It was so sad.  Roo posted a lackluster performance at feeding therapy highlighted by gagging on a piece of salami without actually following through with a full-on vomit.  It's the little things.

Already sleep-deprived and hungry since he didn't eat his lunch, Roo opted out of nap which resulted in general 3-year-old debauchery and me screaming at him on his birthday and putting him into a lengthy purposeless time-out.  Stellar parenting, I know.  I did apologize later and draw him a chalk birthday cake but the damage was done.  Think he's the only one who's sleep deprived?

We capped off the evening with take-out pizza, avoided all happy birthday phone calls, and skipped dessert.  No singing of happy birthday or anything.  We are truly ba humbug parents but it just wasn't in the cards this year.  Mufasa and I spent the vast majority of the night trying to comfort Bean.  Turns out she had something to cry about.  The pediatrician confirmed a double ear infection this morning and her temperature was up to 103.5.  That was with tylenol.  Poor birthday girl.

Just when we thought we were through the woods and the sky was showing signs of life, Looly awoke this morning with a bloody nose.  Now her cheeks are turning pink like Bean's, a sure sign she's next in line for the fever.  She's been complaining about headaches a lot lately and I don't know what to think. 

Phew.  With that off my chest, let's talk about fun stuff.  Bean and Roo received so many sweet well-wishes from friends, family, and classmates yesterday.  My favorite was listening to the two of them congratulating each other on another year.  They really are best friends.  Ear infections pass but the loving support system they have in place is remarkable.  They got some really cool gifts including an awesome Cozy Coupe car that Mufasa grumbled and slaved over, I mean happily assembled, for Bean, a slick royal blue real guitar for Roo, Magna-tiles (my personal favorite!), hand-painted bowls with their names on them, whiffle balls and bats, umbrellas, various adorable new duds, books, etc. Roo was thrilled with his gifts and Bean will be too once she's feeling better.

Last but not least, Roo's scope is finally scheduled for April 15 - hallelujah!  More on that another time.  And did I mention is was 65 degrees and sunny yesterday?  The big birthday party with their classmates is slated for this Sunday.  Let's hope the amoxicillin works it's magic fast.

Our Lady of Perpetual Vomit

I have a wild fantasy that one day I will sit down to a family meal without fear that my child will start puking at any minute.  I won't cringe every time he jumps off the couch or rough houses with his sisters because there's a chance he'll get hurt, cry, and puke.  Maybe there will come a day when I'll prepare spaghetti sauce without the slightest apprehension that a tiny slip of onion might have migrated into the sauce only to end up in the final bite of Roo's plate thus obliterating what was just a moment ago, a nutrient-dense, high-calorie meal.  The baby scale will become a relic of the past.  As will the baby bottles, 1 AM feedings, 4 AM feedings, constant meal-time television, songs, and other distractions we employ to sneak in a few more bites before he can realize what's happening. 

Needles to say, it's a far off land I'm dreaming of.  We're almost 3 weeks into the Budesonide and there's no change, at least on the vomit front.  If anything, he's vomiting more that he was a month ago.  Gagging triggers it.  Unfamiliar textures and flavors trigger it.  Being full triggers it.  TMI, perhaps, but straining with bowel movements can trigger it.  Today a yogurt-induced stomachache triggered it.  Sometimes nothing at all triggers it and he goes on playing like it never even happened.  But most of all, crying triggers it - and when you have a 2-year-old (on steroids, I might add) that you're afraid to let cry, it leads to some interesting behavioral scenarios. 

We still don't know for sure if the Budesonide is having an effect but the signs are less than encouraging.  On one hand, he seems a tad happier especially upon waking from naps and first thing in the morning.  He used to be inconsolable at those times and now, he's generally chipper.  Beyond that, however, no increased appetite.  No improvement in the oral delay.  No decrease in vomiting.  No weight gain. 

Cheese!

Giordano's pizza party Wednesday, veggie-feta pasta topped with Parmesan last night, good Wisconsin cheddar, lactic acid starter culture-laced salami, real buttered toast, and plans for Valentine's Day ice cream sundaes.  I don't know about the kids but I'll be kicking and screaming if and when we're forced to return to our dairy-free ways.  So much fun.  I might make macaroni and cheese for lunch and I don't even like macaroni and cheese.

Growth Charts and Milkshakes

We had our big appointment yesterday with our GI team including our CNP, GI doctor, nutritionist, and various researchers and residents.  Overall, the meeting went better than expected.  Aside from parking garage chaos and Roo's buffoonery which included repeated diving off the examination table, pilfering and eating 3 Dum Dum lollipops from my purse - mostly in front of the nutritionist, and running head first into a porcelain sink that happened to be at his eye level, things went OK.

We're now about 10 days into our Budesonide trial.  I still can't tell if it's working to clear the EoE, but we're cautiously optimistic.  The team gave us an approximate 80 percent chance that the meds will work to clear him up, however temporarily, and said it could take a few weeks before we start seeing results.  I would be a lot more comfortable with 99.9 percent odds in our favor, but I suppose it could be a lot worse than 80.

Exciting for us, though not as much for our CNP, was that Roo tipped the scales at 11.1 kg.  That's 24.4 pounds!  Yes, he was fully clothed, but his shoes were off, so how much can a pair of sweatpants and a long-sleeved t-shirt really weigh?  The CNP was discouraged because he was "down a little bit" (maybe a few ounces - but they weighted him WITH his shoes!) from his last weigh-in at the January scope.  But, as Mufasa and I studied his growth chart in detail, we were happy to point out to her that he is up almost 2 pounds since early November.  In fact, that gap between him and the bottom of the growth chart has closed up quite a bit.  He's still not exactly on the chart, but he's more of a finger width away now, rather than an entire finger length as was once the case. 

We talked about what if the meds don't work, what if they do, NG-tubes (nasogastric - the kind through the nose) versus gastronomy tubes (g-tube - the kinds directly into the stomach).  We talked about his behavior issues and steroids are likely to blame, at least to some extent.  And we have decided to reintroduce dairy to his diet.

According to GI, if the Budesonide is working, he should be able to eat any of the foods that are causing his EoE.  We've opted not to go so far as to put beef, peaches, or apples back into his rotation since he has had at least once positive allergy test to those foods.  Eggs and all nuts are still strictly off limits because they are IgE mediated allergies for him (he reacts immediately).  Dairy, however, has always been questionable.  The prospect of opening up his diet to include dairy is a beautiful beautiful thing.  The fat, the calories, the variety, the possibilities!!  On the other hand, we might be doing more psychological damage here as we allow the kid to indulge in macaroni and cheese, pizza, milkshakes, and full fat cheddar cheese only to take them all away again in a couple of months if the Budesonide course is unsuccessful.  So, where there's an up, there's always a down.  Seven weeks to the next scope.

Roid Rage?

Roo's been taking his Budesonide-raspberry sorbetto slurry two times a day for just over a week.  The first few days were bad - vomiting, crying, food refusal, the gamut.  The next few days were a little better, meaning, he didn't vomit.  A couple of times in there he even acted ravenous.  Then, yesterday he was back to his old tricks.  He didn't eat much, just wanted to sit and suck his thumb.  He did not vomit but he did give us the old shivery-faced pucker that usually indicates he's about to spew after taking a bite of something that's not agreeing with him.  In this case it was chicken, one of his usual favorites.   

Then there's the part where he's become sulky and angry, throwing things both generally and at human targets, insomnia - his, and as a result, ours.  Oh, and plenty of blatant disobedience.  It's unclear whether he's experiencing some sort of toddler Roid Rage or if he's just being a 2.5-year-old boy who had 4 days off from school last week.  Either way it's out of character and I won't be sorry to see this phase end.  Soon. 

This course of steroids will last 8 weeks and then he'll get another scope to determine whether or not it worked.  Of course, I've been scouring the Internet - always a highly recommended activity when attempting to self-diagnose - and it appears as though many (most?  all?) EoE sufferers who respond to the Budesonide treatment respond fully within 2 weeks.  Fingers crossed.

Snow Day #3

The twins had a dentist appointment on Tuesday morning which prevented them from attending school.  Then The Blizzard (Snowpocalype, Snownami, Snow My God, etc.) hit Tuesday afternoon and the wee ones are yet to return to school.  Needless to say it has been a very long week. 

So I made these.  Egg-free, dairy-free, nut-free, and apple-free but you'd never know it.  Too bad I have to share with the kids. 

Oh Puke

Why is he still puking so much?  Once last night.  Again this morning, at the dentist I might add.  Incidentally, he's been asked to refrain from all food and drink prior to dentist visits from here on out.  And again tonight at bed time.  How awesome will it be if he's allergic to Budesonide?  Is that even possible? 

Sweetening the Deal

The biopsies are back and lo and behold, Roo's eosinophil counts are worse than ever.  How the heck?!  I have no idea.  Lot's of theories but no answers. This seems to be a trend with this nasty disease.  He's up to 60-70 eosinophils per high power field.  I think his highest count before that was in the 30's so this is not encouraging.  The diagnosis is anything above 15 per hpf. 

Our current theories for the spike include everything from a tomato allergy to a brand spanking new soy allergy to the mold-infested humidifier we diligently placed by his bed following the infamous croup episode after his scope in November.  Fortunately, none of these are relevant at the moment because they are all giving me a headache.  Or maybe that's the mold.

Roo is nearing his big 0-3 birthday and while we'll be sure to mark the occasion with "Under the Hill" balloons and allergy-free treats, he still tips the scale at 23 pounds and at almost 34 inches, he hasn't added height in months.  It's time to take his treatment to the next level.

We've opted to medicate him with Budesonide (the generic name for Pulmicort - a hot topic on the EoE scene these days!).  Twice a day for 8 weeks he supposed to drink a slurry of asthma medicine mixed with multiple packets of Splenda.  Please disregard the "For Inhalation Only" warnings on the box.

As you might imagine, given the oral delay, sensitive gag reflex, food aversion, and pure hatred of anything too sweet the Splenda slurry is not really working out.  Raspberry sorbet on the other hand, seems to be doing the trick.

So, we've been mixing his meds with about a teaspoon of sorbet.  He is on board with his am/pm ice cream treats and I am stunned that we found a way to get him to take it.  The one potential for disaster here, of course, is that I just emailed our GI team to let them know I'm using sorbet, not Splenda.  I expect the phone to burst into flames at any moment.  Fingers crossed.  Taking it has to be better than not taking it, right?

So from here, once again, we wait and see.  If it works, the budesonide is a way to mask symptoms not cure the condition but we're hopeful that if we can make him comfortable for any length of time and get some weight on him, we'll be better prepared to address his diet once symptoms return.  We're taking the first tiny steps toward embracing the idea of a g-tube should it come to that.  And above all, trying our best to focus on the good stuff.  Like raspberry sorbet.

Law of Attraction

We're still waiting on the biopsy results from the last upper endoscopy but as I mentioned, the scoping doctor already crushed any lingering hope we might have had that Roo's improved.  So, I've been sitting here stewing for the past week trying to wrap my head around the idea that this EoE crap isn't something he's going to simply outgrow.  The allergies continue to increase with no signs of outgrowing anything.  I'm preparing myself for the placement of a g-tube.  I've joined a couple of online support groups for families dealing with eosinophilic disorders.  I'm thinking about how the rest of us will continue to take meals when Roo is the pariah with the tube.  I've put all our air travel plans on hold until the little kids are in college. 

Before this latest scope, Roo was doing better.  Really better.  He was eating enthusiastically, trying new foods, gaining weight for crying out loud.  He was happy, enjoying school, running around like the crazy 2-year-old he's supposed to be.  Then, all it takes is one scope where some doctor we've never seen before in our lives tells us that he has made absolutely no improvement and we are worse off than when we started.  Now Roo's suddenly acting uncomfortable and grasping his throat when he eats.  He's vomiting again.  He still has the remnants of the croupy cough he developed from the breathing tube.  He's waking up several times at night.  We've increased his allergy suspect list to include:

tomatoes
corn
fructose
food dyes
cinnamon
yeast
lentils
peas
lamb
soy
wheat

(in addition to dairy, egg, peanuts, tree nuts, apple, peach, and beef of course)

I'm spending countless hours re-imagining our lives as a family - no unnecessary travel, few - if any restaurant meals, limited play dates, private school (home school?) since I can't trust the public school (or maybe ANY school) to provide a safe eating environment for him let alone prepare food he can actually eat.  And it sucks.  We sit and wallow and wait for the next shoe to drop because while I thought we'd lost our best pair months ago, it looks like we're dealing with a centipede. 

The more we sit at the hospital doing tests, the more research I do, the more EoE families I talk to, the worse Roo's symptoms seem to become.  This cannot all be in my head.  Every time he takes a small step forward someone comes out of the woodwork to take it away and push him back down and I'm so tired of it.  I know it's a long road but we've been at this for over 18 months now.  He has earned the right to some forward progress. 

Yes, it may be a bit flaky even for me but I'm totally buying into the Law of Attraction here.  If you're unfamiliar, the Law of Attraction is this metaphysical, unsubstantiated, Oprah-endorsed theory that basically rests on the belief that like attracts like.  If you have positive, happy, healthy thoughts then positive, happy, healthy things will come to you.  On the contrary, when you sit in the doctor's office attached to a bunch of tubes and wires being told how unbelievably sick you are day after day, you're likely to feel sicker. 

Our biopsy phone call should come today or tomorrow. 

Tomatoes?

I know it's not going to be terribly productive to start blindly eliminating more foods but I'm having an overwhelming tomato suspicion at the moment.  Over a year ago Roo wasn't eating much tomato...perhaps here and there.  That could explain the "clean" scope.  These days he's a regular ketchup lover and has recently taken to those luscious little rubies otherwise known as grape tomatoes.  

Tonight, while dipping his fingers into ketchup and licking his fingers, I swear he got a little rash on each cheek.  It was slight and Mufasa wasn't here to verify, but it was there.  And it hadn't been there a minute ago.  It eventually went away but then he threw up tonight after dinner.  This one seemed like a clear reaction to something...no oral delay or gag to speak of.  So, I'm left wondering.  Maybe it's the tomatoes.  Then again, patch testing to tomatoes was negative so...ugh.

Scope 5

Once again things didn't go according to plan.  I don't know why I keep setting expectations for these things anyway.  The EoE is still there.  There were clear visible signs in the photos and Super EoE Doc informed us he's very well versed in judging the photos and well, the EoE's still there and active.  Of course the official biopsy results will be back some time next week but it doesn't really matter. 

The polyp is still there but on a bright note, today's physician claimed it is not a polyp but rather a "bump", which is great since now there are more of them.  He claims they are associated with EoE and are further evidence that the allergy cells are still alive and thriving.  He took a sample of the biggest bump just to be sure. 

To add to the excitement, Roo is once again experiencing croup following the breathing tube and anesthesia.  He seems to have a reactive airway which means we got to spend a couple of extra hours in recovery while he coughed up blood, received nebulizer treatments, and got some steroids via IV.  We're keeping our fingers crossed that it helps prevent another ER visit tonight. 

We're crushed.  Had big hopes for this one.  He's off everything he was off when he got a clean scope over a year ago so we're back to square one.  We're still a step away from tube feedings but this is a dangerous path we're on.  I fear we're just really getting started.

Big Day

Barring any unforeseen, or, since big sister is infected with some sort of hack-inducing bug, foreseen complications, Roo's long awaited 5th scope is tomorrow morning at 7 am sharp.  So, in order of preference, my wish list goes something like this:

1. No more polyp or other strange masses
2. Assuming wish #1 doesn't work out, polyp biopsy comes back negative for anything truly nasty (assuming they remember to take one this time grr....!)
3. EoE scope is clean (i.e. no allergy cells in the esophagus)
4. No emergency room visit tomorrow night
5. Massive rapid weight gain over next several months
6. Successful reintroduction of dairy in 6 months or so followed by...
7. Outgrowing of additional current allergies and no new ones ever

They reminded me that I have to bring him his own juice to drink in recovery since the standard offering is apple juice.  Even on The Island of Misfit Toys we're misfits.

Vague Intentions

Happy New Year!

Typically I'm a resolutions girl.  I love a good, measurable, finite challenge.  Resolutions past include:

• Lose 25 pounds
• Run the Chicago marathon
• Try a new recipe every week 
• Learn to play tennis
• Take more writing classes
• Become licensed massage therapist
• Start a blog
• Publish something...anything

With the exception of a few minor pitfalls, (still "working" on my novel, inactively seeking out an opportunity to coach a field hockey team and longing to learn how to play guitar) I've been successful with resolutions.  This year, however, the air is filled with far too much uncertainty for resolutions.  There are too many scopes, doctors appointments, new allergies, A1c tests, constant dietary manipulation, stomach flus, skin rashes, vomiting episodes and other surprises around every corner for any kind of focused marathon training.  Keeping everyone alive and fed is still a top priority. 

So a slacker's list it is.  My vague intentions for 2011 are not revolutionary by any means but they all lean toward achieving some semblance of personal balance that's been lacking since, well, I suppose since I got pregnant with twins in 2007.  Write more.  Sweat more.  Eat more good stuff and less bad stuff.  Spend less.  Play more.  Worry less.

Roo threw up carrots at school yesterday.  Next scope is 1/19.  Baby steps on that worry part.