They just don’t know…

Sep 17, 2007 | Hypotonia

We have reached that terrifying point. The doctor’s are baffled…the therapists are baffled. We ALL know there’s an issue…but not one person can pinpoint what that issue is.

The issue is with K’s swallow. She chews GREAT. Her tongue lateralization is perfect. She goes to swallow and everything falls apart. You can see the struggle on her face to swallow. She blinks, winces, and sometimes even tears up. We reached the breaking point over the weekend.

Thursday I tried to feed the girls some PopTarts (they are an FTT parents dream – but that’s another post), as I have been for weeks. M was eating away happily. K was eating away happily, but then it all came tumbling down. K must have had a terrible swallow…because suddenly she was screaming top of her lungs. I turned my full attention to her and she’s spitting out a bite of PopTart. I try to comfort, and she refuses most of it. I try to offer her more PopTart, she screams again. We finally get settled and I try to offer her more PopTart. She takes a bite out of instinct, but the minute it hits her tongue the screaming starts again…like I’d poured acid on her tongue. She refused any further bite of it.

We switched to yogurt, and she was fine. Since then my nearly-18-month-old has been on BabyFood alone. We tried a nice soft cheese sandwich with her sister on Sunday and didn’t get halfway through before she was gagging and spitting it out. She just can’t eat solids anymore. We’re back on stage 3 babyfood diet. We’re using duocal to boost its worthiness and praying for answers.

As of this point the GI doesn’t know. Our speech therapist and occupational therapist are at a loss. The GI is scheduling us with the ST of the children’s hospital (since we’d had swallow studies done just within the past six months w/o any answers)…and hoping that we’ll get answers that way.

So…we’re now at a point where there’s no answers…and none too close in sight. It’s…an uncomfortable place to be.

Sarah

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