Tag Archives: pulmonary aspiration

A Spoonful of Applesauce


Today’s Headline News: Caroline ate a few spoonfuls of applesauce. Big news, right? Well, it is if you haven’t had anything to eat with your mouth in over six years! After Caroline’s diagnosis of Rett syndrome, one the of first procedures we had … Continue reading

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With a Little Help from My Friends


Last week was nutso. Gateway dropped Caroline’s Primary Care Physician (PCP), which disrupted her Medicaid insurance. What does this mean? Well, in the insurance world—particularly in the Medicaid world—you must have a PCP to get anything done. The PCP is the doctor who writes referrals … Continue reading

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Make-A-Wish: If Wishes Were Kisses, Our Face Would be Wet


I think we’ve all heard of Make-A-Wish Foundation, the national nonprofit that helps out terminally ill children by granting them a wish. I’ve mostly heard about it in references to popular culture, where it’s apparently hugely popular to parody. If you look at its Wikipedia … Continue reading

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The Cofflator: I’ll Be Back


Recently I asked Tony about a picture of Riley using a cofflator machine (pictured) on Caroline. I already know of the huge risk  aspiration is for Caroline. What I didn’t realize was all the work requried to mitigate the risk. Part of her daily treatment requries clearing … Continue reading

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I HAVE A MOUTH AND CANNOT EAT: Managing Food with Rett Syndrome


I am struck by the list of simple tasks that my niece, Caroline, can’t do for herself. Somewhere in the promotional material for the upcoming golf event, it says she can’t “sit, crawl, stand, talk or eat.” Can’t eat? I know … Continue reading

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