Thursday, April 15, 2010

The roller coaster of CF.....

I'm happy, I'm sad, I'm hopeful, I'm defeated, I'm determined, I'm overwhelmed.......and so goes the CF ride.

So lets see whats going on around here....I got my first Great Strides donation!!! I am SOOOO excited about that. It gives me a new resolve to get out there and find more people who are willing to give for others. I can't lie, I nearly fell off of the sofa, I screamed so loud that I woke up Justin who was sleeping on the sofa next to me...I couldnt help it, I had gotten so accustomed to seeing the same 0's every time I logged on....oh how that made me smile. Hopefully many more smiles to come before October.

On another note, Today Sarah goes on a unfathomable journey to discuss advanced directives, intubation, hospice....ugly ugly words when they are in regards to anyone, and atrocious when in regards to a little one. My heart is broken for her, I know that Ive said that before, but its true, I'm sad for her, I hurt for her, we're just praying that somewhere, something can be done....Also, Happy Belated Birthday to her little Conner. He turned 7 yesterday.

Then there is the whole pharmacy thing, its Thursday and I still don't have a refill for Natalie's Periactin. I called the nurse, she said she hadn't gotten anything, I called the pharmacy, they said they sent it, gave them the fax number again and they refaxed but then the nurse says that she wants to send a whole new Rx....they're killing me. Sometimes I think technology will be the downfall of mankind...I mean what ever happened to picking up the phone and saying, "Hey, this patient needs this med, at this dose, at this frequency" and hanging up, so much quicker than what we're dealing with right now, I mean this is 3 days....Not that its a huge missing link in our medication regimen. Its absence is barely noticeable and her appetite remains the same...soooo right now my complaints are simply based on then maybe i shouldn't be complaining at all....ahhh the revelations and conclusions that come from typing out your thoughts :)

On a happier note, Emily from the Rock CF foundation tweeted that her pft's are up 20% since October after starting the Vertex Clinical Trials.....ohhhh the glorious high that comes with hearing news like that...the idea that my baby will have the opportunity to have such drugs as these....the hope that comes with news like that, the need to keep yourself grounded and realistic, just in case something goes wrong in the trials....but I just cant help but feeling fantastically hopeful....and then I think about Sarah....why cant her baby have it now? There goes that roller coaster thing I was talking about earlier...

So much to process, so little time.

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