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....

Day 6 came and went

So February 1 was the anniversary of Day 6.   Day 6 was the day that the words Cystic Fibrosis came into our lives and would forever change our landscape.  Looking back on those dark days last year I remember thinking that life would never be normal.  I was so scared to breathe.  I would wake up in the middle of the night to feed Evan and hope that I was waking up from a nightmare...each and every time.  Thankfully today I have come to terms with our "grey area" status.  I am fine with it for the time being becasue Evan is healthy. I also know that should he start to get CF sick some day that I will be more emotionally equipped to handle it.  I know more things and have educated myself on the topic enough that it makes sense now.  It's all going to be ok.  Took me a year to get here but I'm here and that's all that matters. 

Yesterday I took a leap and told some family members of Evan's journey in the last year.  I was nervous to upset them especially so because my family has suffered some unfortunate events in the last couple months.  Both of my grandparents passed away within a day of each other right befroe Christmas.  One expected and one very very unexpected.  My aunts mother had cancer related surgery and my dear sister is going through some very tough times in her marriage.  Needless to say I didn't want to pile on but thought that even though initally they might feel sad that in reality (given all that is going on) Evan's status isn't that big of a deal right now.  After the tears were shed they realized that he is A OK and we moved on.  It felt good to let that go.  I hated having to hold it in but we didn't want to upset my grandmother, god rest her soul. 

The reason I finally disclosed this information is that Michael and I signed up for the Great Strides Walk in Philly in April.  So I'm going to be putting a blast on the Facebook and send a group email to friends and family for support and I didn't want to blind side them and THEN have to explain. 

As for Evan he is currently with a runny nose and a bad attitude.  I can't tell if he's teething, has a cold, whatever.  He does have a cough at times and it usually comes after I hear congestion in his chest.  Sometimes I want to call the CF clinic at CHOP and cry to someone because I feel like he's been sick for so long and i get myself scared that it's a CF cough.  I try to remind myself that the doctor told us to be concerned for a cough that is present with no signs of a cold.   He's never going to be able to just be sick.  He had his 1 year well visit (oh that's right he turned 1 on jan 26!) last week and the pedi said his lungs sound clear and he didn't sound junky even though it was the height of this particular cold.  He weighs 22.8 lbs, and is 30 inches long.  His head is 18" in circumference.  Pretty much in the 75th percentile and doing well.  He still does not eat a whole lot of table foods but we've certainly made improvements in the last month or so in foods he will eat.  Sill mostly carbs and fruit cups.  We have an appointment at CF clinic on Feb. 22.  I'm interested to see what will happen there and I'm dying to know if they will diagnose him with CRMS at that time or if we'll just keep him under evaluation.  That's all that's going on with us for now.