8 Hours/day

So - Our Pediatrician had the peer-to-peer with Dr. Freid (the Aetna Medical Director) today and after an apparently frustrating conversation Aetna agreed to grant us 8 hours of Skilled Nursing per day. That is good. :) However, it is not what we were shooting for. :( Anyway, we have some potential relief so that is a blessings. Continuum Nursing is going to be staffing our needs and they have been VERY helpful and eager to do what they can.

Even so, we are in the process of getting an appeal letter together. There is an incredible lady in NC, Andrea, that has decided to help SMA families by writing Letters of Medical
Necessity (LMN) and appeals for these types of situations and I guess her letters have been pretty successful in getting services. Dr. Freid must not be very interested or informed about SMA b/c he had all kinds of excuses for why we didn't need nursing, so that is what we are up against. Some people just don't get it.

Anyway - it IS great that we are getting 8 hours, and we are thankful for that -- But I'll tell you that my heart didn't jump when I heard "8." We are hoping for at least 16.