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  1. missing my daughter jessica

    I don't usually post...I only read.Today is the 4 week anniversary of the passing of my daughter Jessica.She was 20 yrs old and I miss her so much.I was holding her hand when God called her home.She went peacefully with morphine and in no pain.I guess ilthat is the best we can expect for the end.My hope is that these new meds will help everyone soon.
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  3. Annual Review

    We were a little late sorting Sophies annual review as I had to reschedule her appointment. All in all things are looking great!

    Height and weight are steadily increasing and her chest sounds good.

    Lung function left a little to the imagination because Sophie appears to have forgotten how to actually blow into the machine lol We've worked so hard on getting her to take a big deep breath before actually blowing, that today, she took a huge breath and held it-bless her ...

    Updated 08-17-2014 at 04:22 PM by ChrisBaldwin

  4. Cystic Fibrosis News - Week 33

    by , 08-15-2014 at 07:01 AM (Chris Baldwin's Cystic Fibrosis Blog)
    I am spending considerable time researching, studying and gathering CF news items and sharing important findings on our Facebook and Twitter pages. I want to start bringing in the main items of interest into a weekly blog with outbound links to the different news sources. Please like and share on your social media profiles and let me know if there are any specific topics you would like me to focus on. Any feedback, ideas, suggestions are all welcome! So please feel free to comment and share your ...

    Updated 08-15-2014 at 10:43 AM by ChrisBaldwin

    CF Weekly News Updates
  5. Cystic Fibrosis Might Be 2 Diseases

    by , 08-12-2014 at 02:57 PM (Chris Baldwin's Cystic Fibrosis Blog)
    A must read for all:

    Drugs that help cystic fibrosis patients may also relieve this form of pancreatitis. If the number of patients with the syndrome turns out to be large—Whitcomb suspects it is more than the number with classic cystic fibrosis—then the market for those drugs will grow, and the drugs themselves could become more affordable. The cystic fibrosis drug Kalydeco, for example, currently costs
  6. Where to receive the best care - Stanford or Mayo Clinic?

    Quote Originally Posted by TamaraLynn View Post
    My 2 week old Granddaughter was just diagnosed with CF. I've been reading as much as I can about the condition and feel completely devastated for my daughter and grandbaby. I just found out yesterday so I still need some time to digest it all.

    Medical conditions are, unfortunately, nothing new to my lil family. I have 3 daughters. My oldest and her 1 year old son, my grandbaby, have Cavernous Angioma's. Many bleeds, a brain surgery and another surgery when she had a bleed in
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