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We did our follow up swallow study yesterday, and while the results were still basically the same, we have the go ahead to be a little more aggressive in working on things
We were also able to try a wider variety of textures, since he is eating more now that he was at the last study. He still failed every swallow of thin liquids
but he cleared them all pretty well; either the penetration pulled immediately back or or he coughed well on aspiration and cleared it out ok. We were able to check with a straw this time; he refused the thin liquids in his bottle but since the straw looked pretty much like the bottle with it last time, it was probably the same. He did fine with all the other textures, but he did have some premature spillage and coughing of some crumblier cookie toward the end (we've noticed "break apart" textures seem to be a little harder for him and he coughs more) and he ate about a normal meal's worth for him during the study. She said his chew, tongue control, and bite looks fine.

So here's the plan--she thinks we can thin his bottles a little from where we are at right now; she said thin until he coughs and then go just a little thicker. We also have the go ahead to work on thin liquids, mainly water, with a straw taking small controlled sips just until he coughs once, then no ore, sicne he cough was really good. Controlling the straw by pinching it looks really easy until you try it! but there are these neat sip tip one way straws that control how much is sucked up at a time that she recommended we try. We can then switch to thickened water/etc after after that to continue to work on straw stuff (using our new slightly thinner texture that will go through a straw
), but she is also not concerned about getting him off his bottle. As far as the eating, although he handled all the textures that we tried ok overall, she wants us to continue to use gravy, cheese sauce, etc. to bind his food since he did have some issue with the one bite of cookie, and she feels he "fatigues" quickly with eating and gets a little sloppy with his swallows. She thinks that is why he eats so little at a time (a couple of tablespoons at a meal is pretty decent for him). So we are also to try to offer him solids every 2 hours to build up strength and endurance, and well as up his amount of calories of solids. She's not sure if the fatiguing is related to anything else he has going on, or because he started solids so late, that he is following a regular learning curve that puts him about 8-12m after intro of solids. Continue on the pediasure until we can get a better amount of solids in him.

Overall--I feel pretty good about the visit. I knew he was still going to fail the thin liquids--when he has gotten ahold of brothers' water bottles, he always chokes after a few sips. I wasn't sure how we was going to do on some foods, and the concerns were exactly what we had seen at home. I liked this SLP better than the one we had at the children's hospital, even though she doesn't normally work with kids and has no kids herself. She got a lot more cooperation from him, gave us more practical tips for progress, and I was able to hold him during the whole exam. She and the radiologist also were able to coordinate their actions so he had only the exact moments of bite/swallow with the fluoroscope on, so we got more swallows for the the amount of radiation. She and the radiologist discussed trying a chin tuck swallow but she's like he's not going to cooperate with that
But that gives me an idea of where they are thinking at this point for the future. Obviously, this is not a maturation issue like the first SLP suggested, this is likely to be long term. Whether it is related to CF stuff or not, no one is willing to venture a guess. I'll be curious to see what the dr thinks with the follow up as far as being related--he wasn't sure last time either, but we got a lot more complete picture this time, so he may be willing to hazard a guess this time.

Well, this got really long, so if you hung in this far, thanks
 
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