Pieces of the Puzzle: A Josh Health Update Part II

As noted in my last post, I haven’t blogged much about Josh’s health issues lately. Perhaps this is due in part because all was pretty quiet in September and October. It was kind of nice to get a few quiet months for a change. If you read the Lord of the Rings trilogy (for this isn’t in the movie version), I’ll liken those months to a stop of at Tom Bombadil’s house, where Frodo was able to relax, refresh, and recharge. Still, he always knew that the time would come for him to move on and complete his quest. In life, we all get some Tom Bombadil periods, a few tranquil months here and there. But things tend to pick up again. And here we are again, back on the open road, an unknown path spreading before us

Josh trick or treating at his school.

During the third week of November, an Occupational Therapist evaluated Josh. She was a marvelous woman and perhaps one of my favorite medical professionals that we’ve yet encountered with Josh. And, somehow, in the small time we were with her, she gained Josh’s trust enough to eat a few Cheetos (Organic and Natural, but still Cheetos) with him. After watching Josh eat for just a short amount of time, she told me that Josh only chews on the right side of his mouth and that his tongue cannot even make it over to the left side of his mouth to clear food. I watched Josh chewing later that afternoon and she’s right. How did I miss this fact? She told me that Josh is such picky eater because he is eating to protect his airway. Even the food he does chew, he can’t always do a very good job with and so it can hurt when he swallows. Wow! That makes so much sense. In essence, she told me Josh has actually been very very wise about his eating and carefully selects the food he allows to go into his mouth. I guess sometimes a picky eater is picky for a purpose. (Oh, this is for Erica. The OT goddess also told me that a strong gag reflex is a good thing. It actually means that they are able to protect their airways. It always scared me when Josh was gagging, but I guess now I know it was a good thing–even though he was also showing us he was incapable of eating the things we were giving him).

We are now adding an OT session to our weekly schedule of therapy so that Josh can learn to work with what he has (even, perhaps, using his fingers to help clear the food in his mouth). So when ENT #2 told us, in passing, that Josh had some paralysis on the left side of his mouth, he was right. But, when I asked him if this could be impacting Josh’s feeding and he told me point blank, “No, he’ll eat when he’s hungry”–well, he was just plain wrong. Oh, and then when our genetic doctor told me Josh would eat if I gave him noodles with butter on it?? Well, no. He wouldn’t, he couldn’t (and besides, didn’t she know I’d already tried that along with 14 other variations of noodles? Sorry, I know I’ve mentioned this before, but it burns me now even more, given the latest puzzle piece about Josh). In fact, given Josh’s paralysis, noodles would be a very scary food for him to eat. And then, when this genetic doctor told me the problem was that I needed to wean Josh (Josh was 15 months old when she told me that), I went home feeling tormented and conflicted for a day or two. I ultimately decided to not wean Josh. I was listening to that mother intuition. I even said to Chris, “What if Josh, for whatever reason, is eating wisely to protect himself?” (I was thinking more along the lines of food allergies, but still!) “And what if he really needs this breast milk to supplement his meager diet?” Our genetic doctor even said to me “You’re not a cow.” I didn’t answer her back, but I wanted to say, “No, I am not. But I am a mammal and mammals nurse their young.” I learned that back in Mr. Wenzel’s 7th grade Life Science class, and I am assuming she might have picked up that knowledge along the way too. Cows should drink cows milk. Baby humans should drink human milk if at all possible (and I fully realize it is not always possible). And I am still nursing Josh and I am ready to wean but he is not. And now, I am a bit reluctant to push Josh until we make some progress in OT. Thankfully, Josh has never had any low weight issues in spite of his eating problems and I am, at this point, thanking the breast milk for that whether or not one of our trusted doctors indirectly accused me of contributing to my son’s eating issues by “still” breast feeding him at 15 months. Gasp!

Yep, once again. Trust your mother’s intuition. At this point, I am asking my mother’s intuition to guide me as I look to wean Josh. We’ll get there and hopefully, when we do, Josh will be eating more than 25 different kinds of food (that doesn’t include 15 varieties of crackers).

Josh will sometimes use his potty chair. No huge effort on my part yet though. We've got enough on our plate right now.

4 thoughts on “Pieces of the Puzzle: A Josh Health Update Part II

  1. DEFINITELY trust your mommy intuition! I can’t believe the genetics doctor told you that you were “not a cow.” Seriously? Has that doc updated his education in , let’s say, the past THIRTY years? The WHO recommends breast feeding for two full years! My biggest regret with Nolan was weaning him at 11.5 months because that was the “accepted age” for breastfeeding. Guess when he fell off the weight charts? Yep. One year. He lost the good stuff and his reflux worsened. Live and learn, I suppose – but the nerve of some doctors really surprises me sometimes!

    I’m glad you found out about his eating issues and facial paralysis. Now you can find “Josh foods” that can help him grow while not causing him difficulties. Ironically, it was the speech therapist doing Nolan’s feeding evaluation at about Josh’s age that suggested reflux as a cause to his texture aversion issues and inability to swallow. She was totally right – but it took the docs another six months to confirm it!

    1. The amazing thing is that our Genetic doctor is a female (the one who made the cow comment) and not all THAT old. Well, maybe in her early fifties (maybe). I wondered if she didn’t breast feed because it was too difficult with her chosen profession back then and so because she didn’t do it herself, she doesn’t see the value of it maybe?? Anyway, we like her in other ways and think she is pretty darn effective when she keeps her professional advice focused on genetics, so I guess we’ll keep seeing her for Josh’s annual genetics visit (which, I realize now is due this month and I haven’t yet made that appt.). Yesterday, our second day with the OT, we got another diagnosis. Mild sensory processing disorder–so I guess that is impacting the eating too.

  2. I know that this post is old, but I am appalled that your doctor would make such an ignorant comment. I am a Certified Lactation Counselor and the WHO recommends exclusive breastfeeding for 6 months and then continuing breastfeeding along with complementary foods for 2 years and beyond, till mother and baby desire. I’m not sure if you’re still seeing this doctor that you tell her she seriously needs some continuing education and clearly you are better off changing doctors if this is the kind of advice and criticism you are getting from her. I hope you did follow your mommy intuition and not fall into societal pressure from people who clearly don’t know the facts.

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