Update...

So Sean was officially declined from getting his IVIG treatment this month. I was on the phone at least 4 times a day with our insurance company and the doctors office, etc. Nonetheless they officially declined it. I hate how an health insurance company can determine what is best for someone - even though the doctor is stating how bad he needs to treatment. They are ultimately having problems because Sean doesn't have an exact diagnosis so they feel we are being experiemental....so because of that Sean is set for ANOTHER biopsy next Thursday because now we are desperate for a diagnosis. Its unfortunate because Sean was slowly responding to the treatment, his levels were going down. But heck, why in the world should we keep doing a treatment that works right?? All I can say is at this point I am grateful we aren't involved in the health insurance business...

This next biopsy is going to be pretty intense. They are going to ultrasound his muscles, go in with a wire that I believe shocks the muscle, hook the wire around the damaged muscle and then have a brain surgeon go in and remove that exact spot. Little intense ey? they said that they have only had to do this type of thing once or twice before - gotta love being the anomoly right?? Sean likes to keep it exciting.

So there is an update on Sean, we will probably be another 2 weeks before the biopsy is done and the results are in. We pray they find the diagnosis so we can just get on board for treatment. Mayci's deadline is fastly approaching, we hope so bad that he is on the mend by then.

Thanks for all the calls and comments again, people have been doing the nicest things for us. One of our customers yesterday brought me flowers just because, it was seriously the nicest thing ever! I about start crying while he was here but didn't (I held out until after he left), the simplest gestures can make the biggest difference in someone's day. Just another thing to learn from this experience...he not only made my day but my week! We will definately be better people from all of this...