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....

Rant on Valentine's Day

So next week is Evan's 1 year appointment at CHOP.  I'm not nervous persay but I'm definitely on edge.  Compounded on top of this is the fact that I have to go to this appointment with Evan by myself.  I go to plenty of doctor appointments with the kids alone.  Michael has been to the pediatrician MAYBE 2 times in 3 years.  I went to every ultrasound appointment by myself when the boys were being diagnosed for Pyloric Stenosis.  This isn't the pediatrician's office.  It's an apointment in a huge city hospital where sick kids are all over the place fighting terrible diseases and it makes me anxious.  And it's about our baby who will have to have bloodwork done and I can't fathom how I will stand to hold him while they stick his little arm to get the blood.  After having two baby's need difficult IV's for severe dehydration from PS and 2 sweat tests I knew enough that Michael had to be the one to accompany Evan in the 3rd sweat test and any blood work he may need in the future.  It's just terrible to hear your baby scream and not be able to do anything about it.  Dads have to do that stuff. 

Last week I told Michael that this appointment was coming up and he needed to make sure he had off from work which several months ago he assured me that this wouldn't be an issue.  Well it's an issue and he cannot get off.  I was so angry.  Angry because in December he was able to get off for numerous Mummers events and New Years.  Angry because he said he didn't want to ask off back then because he was asking  for all those days off and didn't want to look bad but that it wouldn't be a problem come the new year.  I got that.  But he waited a month and a half to find out and of course something was scheduled for that day.  I am so angry i haven't even told him I'm angry.  That's how I know I'm really mad. 

So I asked my mom if she could go with me.  She has been watching my niece while my sister is home and since my sis will probably have ot go to NYC next Thursday and Friday and my dad isn't comfortable with staying with the baby all day long my mom can't go unless she brings the baby.  Well I don't want the baby to go to the hospital and fear her catching some kind of bug lingering around there.  Plus that kid can cry.  It's not just any cry, it's that high pitched screech that only estrogen can cause.   It makes me thankful that I had boys...they don't have those octaves even as infants! 

Anyway, this is just my vent about constantly being the parent who has to be "on".  I'll put on my big girl pants and do it, of course, but I don't have to like it.

Hope everyone is having a fun day today.  This day last year I was miserable.  We had the new possible CF news in our heads 24/7 and a vomitting baby and a doctor refusing to let me get Evan an ultrasound to rule out Pyloric Stenosis....because in her mind there was no way we would have 2 babies with PS and we were probaly just looking at reflux.  Well she was wrong.  In two days it will be 1 year since Evan's PS surgery which was followed by the worst PS recovery ever (in my mind!).  Glad those days are long behind us and these are exactly the reasons that keep me from having the 3rd baby I always wanted (aaaand that girl baby scream I referenced earlier helps with that feeling as well).