The geneticist wanted to run two genetic tests. The first test is a overhead view. Basically it is like taking an aerial shot of a town to make sure that all the buildings that are supposed to be there are there. This test would only take about a month to get the results.
The second test is a detailed, very specific test. Basically it is like going inside all the buildings of the town and seeing if all the boards, nails, floors, doors etc that are supposed to be there are there. This test would take about 3 months to the results.
So when we had Phoebe's blood drawn the end of November/beginning of December we figured that we would have all the results we would need by March, April at the latest.
At the end of January, we got the first test results back.
As the geneticist expected, all of the buildings that are supposed to be there are there. This proves that what is going on with Phoebe is happening on a deeper, more intricate level. These results would now be used as proof to the insurance company to show the need for the second (and more expensive) genetic test.
As of the end of January, insurance was still holding firm in their denial of covering this second test. (They also were still holding to their denial of the first test they had previously okay'd, and rejecting appeals that were sent in)
The lab will not start running the second genetic test until insurance gives approval.
So instead of having all of our results by March/April, we are waiting as the lab and insurance continue to fight it out, hoping insurance will finally say okay so we can start the test, and when they finally start the test, we will have a three to four month wait for results.
I emailed our genetic counselor on Thursday asking what could be done in regards to the second test getting approved and started, as well as what could be done in regards to getting the first test's denial overturned.
But when insurance is fighting you tooth and nail on everything, the only response I can get is "we are working on it."
I know the geneticist and genetic counselor are doing their best. They have been amazing this whole time. They have dealt with my emails and phone calls, calmed my nerves, walked me through their processes, answered all my questions (even ones I didn't think to ask) and supported me during my breakdowns. They want an answer and plan for Phoebe as much as I do.
But, what can I do? Tell me who to contact. Tell me what to say. Tell me what I need to send them. Tell me what to do. There has to be something I can do! Isn't there?