2014….seven and a half years since my twins were born. Eighty-seven months since my son was diagnosed with a terminal disease and we were told he wouldn’t see his first birthday. And today, of all days, we opened a letter from CVS/Caremark telling us that his pulmazyme, a drug that helps to keep his lungs clear, will no longer be covered by insurance because there is no proof that it works on SMA kids. No proof? How about the fact that he hasn’t been sick and in the hospital on life support in life FOREVER! Or the fact that sinus infections don’t turn in pneumonia. I think what is most frustrating about this is that they, the all knowing insurance agency, look at the $900 a month price tag and think, “This boy is costing us $10k a year from this drug and there hasn’t been a $5million dollar clinical trial to prove it works, so why should we pay for it?” My response is that we have never come out of a winter/spring sickness that has had him hospitalized in the PICU and on a ventilator for less than $150k, and since we have been using pulmazyme we haven’t had one of those illnesses. But what the heck do I know? I am simply the Mom who has to go to the hospital and tell them how to use his medical equipment because most of the nurses and RTs haven’t seen a cough assist since school; I am the Mom who gets them the SMA intubation/extubation protocol and helps them follow it so he gets to come home from the hospital; I am the Mom who has kept him well and alive six and a half years past his prognosis; I am the Mom who has flown and driven him back and forth across this country to get the very BEST medical support we can possibly get; I am the Mom who has read EVERY piece of information about SMA; I am the Mom who has talked to so many other moms to learn what they do for their kids to help them thrive; however, I am NOT the insurance guy who sits behind a desk and decides who gets what drug. And because of this, Jake and I will be trying something new. I am hoping and praying that his doctor’s suggestion of hypertonic saline works as well as pulmazyme. If it does, the insurance company can save some money and Jake can continue to stay healthy. If it doesn’t, we may be fighting illnesses again. Knock on wood that we can keep our healthy streak going. And thanks, Caremark for making the start of 2014 just flippin’ fantastic!