Ask and you shall receive......at least until the insurance company decides not to pay anymore

Jaggy got a new toy:). Well, not exactly a toy but it shakes him and he seems to like it so far. It's called the vest and it helps loosen secretions so he can cough them up, keeping his lungs clear and hopefully with additional TLC pneumonia free. Jagger always loved vibration so when I saw this thing, I told Sebastien we need to get it for Jagger. Thanks to Sebastien and his desire to network with many mito families we found out about this device from one of his facebook friends/ mito mom. We don't really see doctors and our nurse although good is a hospice nurse so she deals with his pain and not so much preventive care. So thank you Facebook and Twitter and for all those who share your stories. Honestly, we get more useful information on how to care for and treat our son from other families than from our doctors. I don't mean to discredit anyone, we do like our doctors as they have provided great care, however to all of them it really is just a big guessing game. Our mito doc (dr ke) is excellent but mito disease affects everybody so differently there really is no such thing as a standard treatment protocol. And now let's go shake shake shake the baby......well gently:)