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.