I must have been Hitler in another life....

I was once told by a very good friend of mine that I must have been Hitler in another life. That's the only way she could think to explain my less-than-great Karma. And on Friday, the story wasn't much different.

Don't get me wrong. I don't think my life is horrible, or that there aren't others much worse off than me. Through all this, the one thing I have definately learned is that there are always kids who are much more sick than Jack whose parents don't necessarily have the resources to help them.

My dear dear Cousin Rick (bless his heart) is often quoted as saying "I couldn't make this stuff up", and Friday's activity definately falls into that category. I left work early to pick up Jackson and take him to the Hopkins lab for a blood draw so they can run the genetic test for Angelman Syndrome. I had to stop at the pediatrician's office first to pick up the lab form which was no big deal since the lab was in the adjacent building. After saying our "hello"s to the girls at the front desk (who have come to know us well), we picked up the form and off we went. After arriving at the lab, I handed in the form and was immediately asked for the usual documentation. Insurance card, Hopkins orange plate (it's the equivalent of a frequent flyer card). I fumbled around and handed over my cards (never leave home without them). The guy at the front desk then informed me that they don't have a contract with my insurance company. He then suggested that unless I was willing to pay for this very expensive genetic testing out of pocket, that I might want to try going to Labcorp. So I shoved my cards back into my overstuffed bag and started out to the car.

As I was walking down the hallway to the lobby, I thought it might be best to call the Pediatrician's office to make sure I don't need another form. Nothing would be worse than going all the way to Labcorp, only to find out that they won't take the Hopkins form. I plucked my cell phone out of the bag and called (they're on speed dial). Sure enough I would need another form. No problem. I hadn't left the complex yet so I just walk back up there to pick it up.

Once back at the pediatrician's office, one of the other physicians (not our usual Pediatrician) came out to talk to me. Apparently it doesn't seem like, or at least no one could be sure, that Labcorp is actually capable of performing this test. And with that in mind, we might have to fight the insurance company to pay the lab they don't have a contract with. But for now, we were told to just "sit tight", and we would hear from our usual pediatrician on this topic on Monday. Again I thought, no problem. The test takes 2-3 weeks for results anyway, so what's another couple of days?

Except now, I've stewed about it all weekend. The Hurry-Up-and-Wait is about to Hurry-Up-and-Kill-Me. It seems never ending. Day after day, week after week, month after month. It isn't bad enough that the test takes so long for results but now I know it may take longer because now we have to duke it out with the insurance company. And who knows how long that will take?

Any romantic ideas I had (not that I had that many) about the medical industry have been completely obliterated. Nothing happens like it does on ER or Gray's Anatomy. There are few conditions/diseases/syndromes or whatever that can actually be diagnosed with a simple blood test/xray/ultrasound. Most diagnonsis are arrived at by exclusion, meaning that you start at the top of the list and cross off the ones that don't seem to apply to your situation. The problem with this is that it can take years and years to properly diagnose a person. Our Genetic Neurologist once warned me that it may take 10 years for us to put a name to Jackson's condition (assuming there is one). There is no test to tell us that he's absolutely fine and will catch up developmentally. And there's no test to tell us that he won't.

I do however have to say that most of our doctors have been outstanding. I mean really outstanding. Our Pediatrician has us on speed dial. She's given me her home and cell phone numbers and doesn't hesitate to book our appointments for 45 minutes as opposed to the usual 15 minutes allowed for most patients. And she is patient with me, oh so very very patient. Our Genetic Neurologist calls me almost immediately after reading one of my frenetic emails regarding my lastest suspicions. He's actually won an award for Outstanding Compassionate Care. And so far none of them have called me crazy (that I know of).

So until we get more "clues" to help solve the mystery that is Jackson, we just have to "sit tight". Right, bound and gagged. Anyone have some duct tape?