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.

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. 

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.