Now this is a story all about how...

...I have a blog!  And I stink at writing in it.

I've been going  back and forth on whether I wanted to continue this blog.  No one really reads it so what's the point?  But then I remembered why I started and it wasn't to have a big readership but more for my own therapy and if someone happens to google CRMS or Evan's mutations DF508 and R1162L and somehow this blog comes up and gives them hope then I've done my job.  While I don't write often when I do write a post it feels like I'm getting something off my chest so I'm hoping to keep up a bit more since I feel like I can't write this whole "CF grey area thing" off completely.    So let's back it up to February.

I scheduled Evan's 1 year follow up with his CHOP Pulmonologist.  I took my mom for moral support since Michael couldn't go.  Overall the appointment went well and when Dr. K walked in he actually wondered why we were there since he thought he had told us not to come back when we spoke on the phone about the normal sweat test result.  I don't recall those words coming out of his mouth and I'm sure I would have remembered that!  So we talked about his illnesses in the last 6 months and the current dry cough he had been experiencing since his last cold.  Based on this information he concluded that Evan probably has allergic rhinitis and ordered an allergy medicine.  Since we weren't "symptom free" he told us to come back in August for a biannual follow up rather than waiting a year.  I asked about Cystic Fibrosis Related Metabolic Syndrome and he said he wasn't going to go there just yet since he doesn't have enough "clinical" information to go on.  From there I told him about the woman in Poland with Evan's same two mutations and that the only symptom of CF she has had was that she had difficulty getting pregnant and they had to use IVF.  This put the idea in his head to refer Evan to the Urology dept to check for vas deferens.   Basically we're going to tick away on a list of tests to see where the road takes us.  Again, this was a very good appointment and since I was expecting bloodwork to be done and possibly a chest xray and sort of thinking that we would be walking away with a CRMS diagnosis I was on cloud 9!  Mom and I took Evan to lunch and to the mall for some much needed shopping! 

More later on the vas deferens check, a Disney vacation and a cough that wouldn't go away....