Wednesday, July 1, 2009

Open Cup Trials, Day One

I realize the first three words of that subject line look totally random. "Open cup" means a cup without a lid, a Big Boy cup, a regular ol' cup like those from which most of the world consume their beverages. "Trials" as in trying something out, as in you hear of the FDA having a drug in "clinical trials".
We are trying Kittyboy, at the age of 2.5, on an open cup. No straw, no head-down positioning, just up, up and away with a totally open cup and his head aallll the way back so his airway's nice and open, so he can cough and aspirate all he wants and develop bronchitis or pneumonia in the middle of summer! What FUN!
Okay, so the majority of that last paragraph was sarcasm.
Kittyboy has drank through a straw for over a year. Prior to that, it was a bottle, thickened liquid only, with him on his side and the bottle propped at a goofy angle. He had to drink with his head down to protect his airway, because his lazy little undeveloped airway couldn't be bothered to protect itself. It would leak into his sinuses and occasionally into his lungs (not into his lungs so much after we switched from rice cereal to an actual food thickener). So when he started on actual food, his speech therapist (speech therapists address feeding issues as well as speech, since it's all the same muscles) started him on a straw cup. Head down, airway protected, all was cool, and it was a cup not a bottle. So that's what he's been using until now. He was slowly weaned off thickener, I posted last Thanksgiving about his last video swallow study showing that he was safe with thin liquids now. But he wouldn't cooperate at the time for them to test him with an open cup (a sippy cup would have been a developmental step backwards, straws are considered more advanced, so an open cup is the next step).
We tried open cups off and on, and water bottles and such, and it didn't go so well, mainly because he didn't have a halfway point between "head down" and "head all the way back", which totally opens his airway. When I got some old Tupperware sippy cups that had open spouts (not spouts with tiny holes), I decided we would just go to those cups only and see what happened. About a week after we started, he tipped his head AAALLL the way back, and totally aspirated. He had a cough that night - and the next day - and the next night - and three or four days later, he had verifiable bronchitis. The doctor's advice was that since you can't ask a disease where it came from (though he also thought the cup was the cause, more likely than not), stop the sippy/open cup trials and start again in summer, after cold and allergy season and before fall allergy season starts, so that if it happens again, we'll know for a fact it was his drinking and not something that he might have gotten anyway.
So today, July 1st, easy date to remember if we have to take him in with a cough, I pulled out one of the Tupperware cups again. He'll drink from it any time he's not in the car, because if he started gasping while in the car, I would have to park, get out, run around the car, get him out, just way more time involved than would be safe. He had a straw cup with breakfast, but his "big boy" cup at lunch.
And boy, oh boy, do I have a newfound respect for the expertise and patience of SLPs who do feeding. I'm teaching him the term "head up" (neutral position) as opposed to "head back" which is tilted definitely back, and that's going okayish, that'll improve with practice, we've only done one meal so far. He can practice head position by itself with the lid on. But mouth positioning without the lid? I'd forgotten all the body-awareness hassles when he first started drinking from a straw cup and would forget to close his mouth. Or firmly believe it WAS closed, and stare at you cluelessly as the whole mouthful poured down his chin while you said "Close-your-mouth-close-your-mouth-close-your-mouth, oh drat." Poor body awareness - he didn't know his mouth was open, or couldn't remember how to close it. We stripped him before all meals. He learned to keep his mouth closed after drinking through the straw, but now can't figure out how to close his mouth only partway for a cup. TOTALLY different skill set. And he stares at me blankly while I say, "Open more - close a little - no, don't bite the cup" while I try to MAKE his mouth do what it has to. I may get bitten one of these days. I tried kneeling next to the high chair so he could see from the side how Mommy drinks her coffee from her open cup, and that was when I saw that his tongue is totally in the way and he won't/can't keep it down. I believe we'll be starting meals with the vibrating toothbrush again, and "Tongue down and close your mouth dear" may be added to the list of things I will be saying the rest of his life, like, "Now chew and swallow before your next bite."
Fourteen years from now, we'll be hearing, "Mom, I can drive a car. Could you please, please stop telling me how to eat!"
But hey, the couple times he coughed, he recovered fine and there's no lingering cough yet. One meal down, many to go.

2 comments:

Pres. Kathy said...

Good luck!

Mimi said...

Best wishes.

I admit, your sarcasm made me giggle.