Big Leaps Forward... We Hope

This morning Asher had his evaluation at the Feeding Disorders Clinic at the Children's Hospital.  Four occupational and speech therapists observed him play, eat, and babble for two hours while they asked me questions.  The women were very nice, but it was still an intense and stressful visit.  Two hours of questions like, "Is he always this quiet?" - "Does he always do that with his head when he eats?" - "Does it always take him that long to swallow food?" - "Does he usually move his legs like that when he chews?" - "Does he always pocket food?" and on and on and on and on.  I honestly felt like a hunk of steak someone was taking a tenderizer to.  Here I am, this is me as a parent, now just beat the crap out of me.  (P.S. that was a very 'Ben' thing for me to say right there, he is a lover of colorful language ;)  After spending an hour in the playroom, messing around with toys and scampering around on a mat, we moved to the kitchen.  

I was already a little emotional ('little emotional', like there is such a thing when it involves your kid...) by this point because I could tell from their questions that we were not going to have an evaluation that showed everything was fine.  We sat down at a table and Linda pulled out a new piece of paper.  "What are your goals for Asher?" she asked me.  Without putting any thought into it I responded immediately, "I want him to be able to drink a juicebox".  And then I started crying.  Asher, who was watching me intently, yelled "Mama!" and threw a piece of watermelon at me. We spent the next hour watching Asher eat.  And by that I mean we spent the next hour watching Asher take things in his mouth, squish them around, stuff them in a cheek, and then eventually spit them out.  I watched them taking notes and trying different things, wondering what they were going to tell me at the end.  When Asher was done eating/playing with his food he waved both hands in the air (his signal for 'all done') and that was that.  The next twenty minutes were spent reviewing their findings and making a plan.

So the good news is that he isn't totally terrified of food.  They expected him to be more afraid and reluctant to eat. More good news is that he has learned how to protect his airway ten ways to Sunday (is that a thing?), which is really impressive for someone so little (...maybe I should stop calling him goldfish brain? At least to his face?).  The bad news is that he doesn't know how to chew, a skill babies start developing around 6-8 months of age.  He moves his mouth like he's chewing because Ben and I spend so much time modeling how to eat for him, so he knows what it should look like, but he isn't actually doing it.  The therapist told me that when they would see him start to actually try to chew, he would rock back and forth, which shows that he is working really, really hard; so hard that in his little baby brain he thinks that if he moves his whole body he will be able to do it.  The therapists agreed with our pediatrician and pulmonologist, that when Asher should have been learning how to eat he was battling back-to-back viral infections and had untreated reflux, all of which contributed to him not developing normal strength, coordination, and confidence required for eating and drinking safely.  Take Home Lessons Here: 1) Make sure your pediatrician doesn't suck, 2) Make sure your pediatrician doesn't suck, 3) Make sure your pediatrician doesn't suck.  

We have a long list of exercises to do with Asher at home to teach him how to actually chew.   In addition he is going to need weekly therapy sessions to work on strengthening his jaw and improving his coordination.  They told me that just from their time watching him they can tell he is still aspirating on liquids, so we need to continue thickened liquids (no juiceboxes for now).  They did agree with our preference to not have another barium swallow study done right now, so at least he won't need any more procedures for the time being.

My new full-time job just became teaching Asher how to eat.  Stay posted, this can only be interesting and most likely hilarious.  

Waiting to see the therapists, checking out the fishies.