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...

Mayci...

I had my 3D ultrasound yesterday, it was really fun even though she wouldn't cooperate. She was moving around like crazy so we didn't have the best of luck getting many good face shots, but we did get alot of good feet shots! It was so fun to get to see her little features, I can't believe how big she is getting. We did find out that right now she is breech - her head is in my ribs and her butt is where her head should be....so if she would start working on a somersault that would be lovely. I still have time for her to flip - I am just 30 weeks, lets just hope she does it!!

Yet another informationless update...

So no new news yet again. We went to a doctor at the U on Monday who ruled out one of the possible autoimmune diseases which we were already 90% sure he didn't have, sadly it would have been one of the better autoimmune's but at least we checked another box off I guess. We flew to Vegas on Thursday for the other doctor's appointment, we weren't super impressed on Thursday but he had us come back in on Friday and he brought up some tests that from what he could tell hadn't been ran. So he is running a couple of virus tests and also a heavy metals test to see if anything like that is in his system - the heavy metal thing would be an amazing thing because he could just do a cleanse, but both Sean and I feel that its bigger than that and don't want to get our hopes up. So we should hear back on the viruses this week, the metals next week...we may not find a solution but at least we got an outside opinion on some different possibilities and we got to spend some time with Sesily, Trent and the kids which was a nice break!

Sean is scheduled to get another IVIG treatment on Thursday, I am crossing my fingers that it happens. It the middle of all of this our insurance has decided to be butts and not approve the treatments...not only are we fighting to get the $36,000 from September paid but more importantly trying to get him approved for this month's treatment so we can stay on schedule. Why can't things just be easy?? I am hoping things clear up for us there, I swear if its not one thing its 10 more. I think we are on track to get things worked out - its just a battle doing it.

So that's that for an update. Still sitting on the waiting list for Mayo clinic, and in the meantime hoping that this IVIG treatment kicks in. Sean's CPK levels (muscle enzyme) were down to 26,000 last week - which is still crazy high but just 10 days before he was at 37,000..so we are hopeful he is responding and its just a slower process than what we had planned. Still good news though! again, I can't thank everyone enough for all the comments and calls!!