Disney! And a few other things

The countdown has begun, four weeks to go!  We are going the week of Thanksgiving.  The kids are excited but it still doesn't seem real to them, I don't think.  I am REALLY looking forward to it, though!  We all need to get away and do something fun.  We booked a really nice kennel for Romeo, too, so he'll be getting a vacation too (even though I am going to feel bad for leaving him there...but I'm sure he'll be fine!) 

I am a little frustrated with some people on the PPMD message boards (which I think are public now, in case you are ever bored and want to read up) with the whole Ataluren thing.  I don't understand how someone could read that press release and say things like, "this is not news," and "I am losing hope with this one."  Did they read the same thing I did?  Because it looked to me like they were going to try to get it approved...there is a PPMD staff member whose role is mostly related to research, and even SHE seems to think that...she said, "there is precedence for drugs being approved on different endpoints after re-analyzing the data. That's why it's been so quiet over at PTC for so long--they've been frantically compiling evidence for the new drug application based on the low dose data (about 14,000 pages worth)."  I guess I understand that there are a lot of ups and downs when it comes to research, but this is the closest any med has ever gotten and I refuse to believe it's not going to get approved.  Hopefully that doesn't mean I'm in for a huge letdown.  There are people on there who post every new research tidbit, and it seems like people get more excited for the drugs that are in infancy stages and most likely will never even GET to human trials than for this one that is SO CLOSE.  Anyway.  Just a vent.

Another frustration, just with the disease in general-a boy who I think used to be a patient of our office that had DMD died in the last few days, he was 23.  I had never even met him, but everytime I hear about someone that has passed away, I think, "23...that's 15 years away for Seth."  And that's not enough time.  Hopefully we will have more, but it really gets me down, even though I shouldn't let it.  But it's impossible not to think that, to be hopeful and focus on the moment ALL THE TIME, as much as I try to.  And I am successful most of the time, I really am.  I was listening to a podcast interview with a lady whose twin sons have DMD and the interviewer said something to the effect that she just couldn't imagine, and how did the lady pick herself up off the floor?  And I was thinking, "you just do.  You HAVE to."  Even though your heart is broken and you feel so powerless, you have to get on with life. 

So this was supposed to be a happy post about Disney...but I wasn't feeling super happy, so there you have it.