Happy Birthday X 2

I have been crazy busy at work this week leading up to this conference I am leaving for on Saturday.  I will be gone until next Thursday, so I am praying that there is no downward baby movement while I am away since I likely wouldn't be able to get back in time. Kind of freaks me out to leave for this long at this stage in the game, so I am trying not to think about it a whole lot.  It will be even harder to not be able to see Ari for that long too.  We will be talking on Google Video Chat every night, but it isn't the same obviously.  One of the many reasons I love  technology.

Teri has been feeling the stress of late pregnancy.  The Vanco and lipids are still helping in that the vomiting has subsided, although she still has a cough that looks painful given her large belly. All I want for her is a good night sleep, which unfortunately will not improve when the baby actually comes out and into our lives. I am actually really looking forward to having this baby so Teri can fully focus on her health and the doctors can treat things more aggressively not having to worry about the baby.

Speaking of treatments, there was very exciting news recently about a new CF drug that was approved by the FDA called Kalydeco.  The drug is described as "a new oral medication for people with CF with the G551D mutation of CF. It is the first drug available that targets the underlying cause of CF – a faulty gene and its protein product, CFTR."  This is an extremely ground-breaking medication for CF, however Teri does not have the G551D gene so it would not help her.  There is hope though, because there is another similar drug in the pipeline (currently in phase 2 of 3 trials before gaining approval) that does the same thing for the F508del gene (aka Delta 508) that Teri has, along with over 90% of CF patients. Based on how long it took for Kalydeco to be approved, it will probably be approved by the FDA around mid-2013 assuming all goes well (which it is so far).  Really exciting stuff, but we'll see how much it costs.  Right now they are saying Kalydeco will be $250k for a month's supply... yea, insane.  I guess that just gets passed on to the insurance companies if prescribed, but seriously, that is a problem. 

Last but not least, it is both Teri's and my mom's birthday today!!  Having these on the same day makes it way easier for me to remember every year.  I gave Teri her gifts last night, and we are going to dinner and a movie tonight to see "The Vow" (her pick).  We got VIP seats at a new theater nearby, so we'll be in the back behind glass so you can't hear everyone chomping on their large troughs of popcorn, and we get reclining leather chairs.  I thought it was funny when I went on facebook this morning, I saw this in the top right corner as another reminder...

Enjoy your weekend everyone. I'll probably have some pics of Atlantis in my next post, so stay tuned.