I reached out to Phoebe's immunologist at CHOP in March, and within a few hours they wrote a letter of necessity to be sent to insurance and contacted her geneticist to see what more they could do to help get the testing covered.
Before we went away on our vacation, Phoebe had an appointment with her lead doctor, the immunologist in Berkeley Heights. He reached out to the geneticist as well, to see if there was anything he could do in regards to the testing. Since the blood for this test was drawn in November/December, we should be getting the results now, not still waiting for the test to start.
We need this second genetic test to, 1) hopefully give us answers to what Phoebe has and what she is facing down the road and 2) give us a treatment/maintenance plan for Phoebe. From the way insurance is acting, it looks like the only way to get this test done soon is to try to pay for it ourselves, and with how much it costs it is definitely putting a lot of stress on us.