Kintropy In Action

As Hannah downsizes her technical supports: the trach tube, the ventilator, and other equipment, we are (often) asked what Hannah's prognosis and diagnoses are.  The prognosis one always stumps me.  This question is often code for exploring Hannah's worst possible outcomes.  Will she ever walk unassisted?  Will she ever talk in a way that people other than her parents can understand?  Will she eat by mouth rather than by g-tube?  Are you parents being realistic about her life's trajectory?

Of course, Janette and I usually answer this question by pointing to Hannah's love of music.  Her prognosis, we hope, is to become a rock star (rather than a groupie).

The diagnosis one, once we get through the transparent diaphragm (corrected), the cleft palette (corrected), etc., is really agenesis of the corpus callosum.  This is the condition that will inform Hannah's life, but not define it.  Hannah's wonderful nursing company's director, B., referred us to a podcast and webpage called A Day In the Life... Meet the Ingersons.  Natasha Mitchell's blog about her podcast interview and about the diagnosis include additional information and links.

The podcast interview is wonderful.  Janette and I found ourselves comparing notes, finding similarities and differences in the Ingersons' experience, but recognizing many of the same themes.  In addition to the Ingersons' narrative, I appreciated Dr. Sherr's excellent layman's explanation of agenesis of the corpus callosum.  I learned more from that explanation than from any of Hannah's doctors-to-date.

Anyway, if you are interested in learning more about the Ingersons' experience (and, indirectly, Hannah's), I encourage you to check out the podcast.  I found it invaluable, and I'm sure I'll be punching through many of the resource links on the All in The Mind page, too. 

-- Dad