dmoffatt1 ... I don't know anything about Texas medicade, but your local ALSA (ALS assoc.) rep should be able to help you manage the paperwork jungle. Also ... have you connected with Muscular Dystrophy Assn? (Jerry's Kids). They fund treatment for ALS patients, too. One of these organizations should come through for you.
Kevin ... yes, the US health care "system" is a cruel joke.