I must have made it up....

So, I have been preparing myself with a list of questions to FINALLY ask Con's genetics's doctor face to face. This Friday, July 1o, has been marked on my calendar since June 10.

I emailed his genetics counselor today to confirm the appointment and she emailed me back stating that she spoke to the appointment office and CONNOR HAS NO APPOINTMENT FOR JULY 10. WHAT THE FUCK? (Excuse me). I have been waiting for a month to finally see this doctor face to face and get some freaking answers as to why he is missing a piece of chromosome and why it has trans located itself to another chromosome.

They had absolutely no compassion for my situation which made me even more upset and more angry. I was in tears screaming at this woman on the phone accusing me of never calling for the appointment. I finally said, "so your saying that I am making this up"? She proceeded to tell me she never spoke to me. I guess I must have mysteriously marked it on my calendar and both Eric and I took an extra day off of work just for kicks.

I am appalled by the lack of bed side manor these folks have. I tried my hardest to explain how useless it is for me to receive these results over the phone and then play phone tag for weeks just to get answers to my questions on my answering machine.

I told the genetics counselor that she needs to fit me in on Friday, July 10 and she told me they were booked to capacity. Yeah, booked with Connor's appointment.

Connor's new appointment is SEPTEMBER 8. We will see the doctor and the cranial facial team that same day. They emailed me and told me that if there is a cancellation we will be the first to be told about it. OK, and that does what for me?

Connor's MRI will go on as scheduled this Thursday at 8a.m. At least I know his pediatrician will phone us with the results and let us know weather or not we are looking at Leukodystrophy or not.

I can honestly say I have never in my life been so angry at a doctors office. I don't know why it is that some offices have no feelings what so ever for what families might be going through.