Rett Syndrome expert herself just called to give me the mother-of-all-tongue-lashings. She told me she actually "left her clinic where she has really sick children who desperately need her" - as opposed to our C. who clearly doesn't rate-in order to blast us. Our crime? That we asked her secretary to hold on to the blood the hubby just delivered yesterday while we decide whether or not to proceed with the MLPA test.
As I wrote, this single test will now cost us about $150 more than the expert had originally told us. She reminded me that it had taken us months to get C.'s blood samples to them for this test. Then for good measure she noted that they are "doing us a big favor" by arranging this test.
I didn't dare remind her that her team had drawn vials of blood from C. just five months ago and subsequently claimed that they "didn't have enough DNA"! I didn't dare inquire about the status of that blood.
No, I didn't dare because this medical monster is the only pediatric-neurologist-Rett-expert in the entire country. More to the point, she is our only chance of getting C. into the full exome study if the MLPA test results prove negative.
So I sit here blogging away, choking on rage and feeling my blood pressure climb (but afraid to actually test it).