For weeks the countdown to the next CF clinic appointment has been on.  Angel and Brandon both had their blood drawn for the full genome sweep to determine their CF standing.

While yes, I’ve been in a panic about Brandon’s…

I’ve also been secretly worried about Angel’s.  Despite everything, I wondered if it would actually come back positive.

Don’t get me wrong. I know everything we’ve been through. I remember the past three years clearly.

It’s because of that that I’ve been worried.

In case you don’t remember, our Journey to CF (Part 1, Part 2, Part 3) was not a clear, direct path.  In fact, it wasn’t until May of 2010 and 1 positive test result that our highly experienced and dedicated, CF specialty, Pulmonary doctor said without a trace of doubt that this was CF.

So, in the back of my mind lingered that bit of doubt. Wondering, worrying what the test would show.

Tomorrow was supposed to be the day.

The city is covered in ice and the appointment has been CANCELED.

When I got the call I asked for the nurse to call me back. “Brandon is freaking out” was my excuse – but in truth, so am I.

They had to run Angel’s test first so they knew what to look for in Brandon’s.  So….her results are in – his are NOT (oy).

In short, Angel has CF.

In length, the two defects that create her CF are VERY RARE.  She’s a mutant of a gene mutation.  She’s…unique. (we always knew that).

We don’t know the full extent of what this means for her. Or if it means anything at all beyond her having it.

We have to meet with the doctor for that.

So we’re back in a holding pattern. Our next scheduled appointment is the 23rd.

We’ll be looking for and hoping for answers for Brandon before then. The CF nurse is keeping an eye out for us. If I don’t hear anything by Wednesday of next week, they haven’t got them in.  I’ll call again the following week to see. If they still don’t have anything, the next week will be our appt.

So…all we know now is that our little Angel is a weirdo.  Unfortunately, this isn’t really news. (But it is a relief to have genetic confirmation that her strain is unusual, and we haven’t struggled to reach an answer that was false).