A recent visit to the ER for my son Nicky powerfully reminded me how much power we have, as parents of children with rare diseases, to control the situation. To control how we are treated. To make sure we are listened to. We are, after all, the experts on our kids! Nicky may be 21, but he’s still MY kid. Speaking up for my son, especially  if something doesn’t sit or seem right is now a way of life. No one knows their child like his parents. Even so, parents are often treated by doctors in general in a dismissive and condescending way. It’s up to us to make sure they understand that it’s our job to tirelessly fight for our children’s health. It’s up to us to make sure that those who work FOR us acknowledge the validity and credibility of our point of view. But, it didn’t start thatRead More →

One would think that after all these years of dealing with the Insurance, Medical Groups, Doctors, NPs, Referral and Service Personnel and the Medicalese involved, I would no longer have to deal with the insanity and run-around of people telling me completely different things, but I suppose I am no immune to ignorance. Just because I’ve dealt with stupid people before, that does not mean it’s not going to happen again. Ugh. Late last year the company that provides us with Nicky’s g-tube supplies (Lifecare Solutions) left me a message to let me know that the company was moving out of the state and that so-and-so company would be taking over. So far so good. No problem. In the past, the referral was automatic, so to speak. The new company would take over the monthly re-supply order of the pump, the bags and the various supplies that sustain Nicky andRead More →