Keep Dancing, Mariah

July 19, 2008

Friday’s speech therapy was challenging and rewarding.  For the first hour, she tried several types of assisted communication devices, none of which were perfect and all of which hold some promise. A common approach is to use a computer screen to display a matrix of letters, words, or pictures. The computer slowly “scans” down the rows, highlighting them one at a time, and the user depresses or squeezes a switch when the desired row is highlighted. Then scanning happens along the row in a similar fashion. But Mariah has trouble initiating movement quickly, so halting a scan at just the right moment is sometimes hard for her. The therapist proposed to try a 2-switch approach: one to allow her to advance the scan one step at a time, and the second to select the highlighted object.

For the second hour, she endured a swallow study, ingesting different types of liquid and semi-liquid food laced with barium so as to be visible on an X-ray movie. The first test resulted in liquid going down the wrong pipe and Mariah coughing it up and onto the technicians and therapists huddled about her. (When asked later about her “epic hurl”, she laughs with gusto.) Subsequent trials went better, and the decision was made to give her ice chips and nectar-like liquids next week. Inspired by a story about the delectable sausage Mariah ate at a Red Sox game this spring, her therapist promised her pureed bratwurst at the earliest opportunity. Hmm…

Mariah and Chai Tango (Ft. Meade, 5/2008)

Mariah and Chai Tango (Ft. Meade, 5/2008)

Back in her room and waiting for the kinesiologist, we danced to disco music from her wheelchair, jitterbugging and spinning, arms akimbo and her face all lit up with laughter. That’s the picture I’m holding in my heart as I work from DC this weekend while her Mom serves as her “non-medical attendant” (one a time, please).

Keep dancing, Mariah, our hurling dervish.

– Dad

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