Leaming the ropes
One mother explamed 'It's a matter of leammg the ropes'
to deal efficiently with the health care system Her
18-month-old child with myelomemngocele expenenced
nme surgical operations smce his birth She noted 'I've
learned a lot and I'm leammg to get it nght' One mother
of a child with a complex seizure disorder learned to call
the doctor or the nurse practitioner or to alert the epilepsy
team that her child was commg mto the emergency department
In so domg, she did not have to wait for hours and
recite the child's history to a resident or a doctor who not
only was unfamiliar with the child but who may not understand
the uniqueness of the child's regimen