• My Family

    Blessed by the Lord for the Joy of family!!

  • Rachel’s Daily Cystic Fibrosis Medications

    Albuterol (2-4 x)
    Hypertonic (2x)
    Pulmozyme (1x)
    Glutathione Inhaled (2x)
    Advair (2x)
    Prevacid (2X)
    Ursodial (2x)
    Glutathione oral (3x)
    L-Arginine (1x)
    Acidophilus (3x)
    Vitamin (2x)
    Periactin (2x)
    vitamin d3 (1x)
    Cal/Magnesium blend (1x)
    ADEK (1x M,W,F)
    Creon 12 (6 with meals and snacks)
    Vest (2-3x) 30 minutes
    Percussion (30 minutes)
    alpha lipoid acid (1x)
    singulair (1x)
    fish oil (1x)
    nasonex (1x)
    zyrtec (1x)
    azithromyicin (M, W, F)

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  • Monthly Archives

Hope

So after my last post…the Lord allowed me to be reminded of hope.  Somehow there is this antithesis between hope and reality.  We walk it daily.  We must live on the side of hope that things will soon be different, or the future reality is just too hard to process.  Yet, the reality that we are not there yet is pressing.  There is no way of separating this dichotomy with the daily grind of medicines, treatments and the constant worry over germs and sickness.  I think this is one of the reasons that I enjoy the spring time so much.  It is full of hope and renewal.  Trees begin to bloom, flowers are emerging from the brown dry ground…LIFE…HOPE!

It is also the time of our Great Strides walk each year and during these times…you can’t help but focus on hope.

HOPE LIVES!

I am going to share a few slides that I got from a sweet friend of mine the other night that brought great hope and encouragement!! Please go and check out Breck’s blog @ http://bennettgamel.blogspot.com/2013/03/vlc-2013-science-update.html    She has a kiddo with CF.  She has a delightful heart and is an excellent writer!  Once you read her blog you will understand.  She has a gift in being able to clearly process and explain some of the difficult things about CF.  It’s comforting, in that we approach CF in much the same way…research and understanding this disease are one of our main coping mechanisms.  Somehow if we understand the why, we can cope with the harsh reality.  Anyway, here is the EXCITING NEWS!!

EXCITEMENT!!!!

EXCITEMENT!!!!

THIS SLIDE IS BEYOND EXCITING!!!

This slide represents hope!  Last year, the Cystic Fibrosis Foundation was able to cross the finish line with a “working medicine” (as near of a cure as we can hope for currently) for 4% of the CF population.  Rachel, unfortunately was not in that 4%.  However,  providing things go as they are expected, we could be able to have a working medicine to help significantly in Rachel’s mutation in as little as two years!  2015 seems so far away, and yet around the corner!

CFTR activity

 

 The next slide represents the efficiency of the new drug.  While it is not to the status of Kalydeco, it is a HUGE step in the right direction.  At this point anything that can slow down the progression of this disease is a sight for sore eyes.  Our goal is that 50% (if you check out Breck’s blog, you will get a more descriptive assessment of these slides.  But for now, know that we are on the right path!

YOUR DOLLARS HAVE HELPED!!!

YOUR PRAYERS HAVE HELPED!!!

YOU ARE CHANGING OUR FUTURE!!!

This disease will be cured.  We are that close!  But we can not stop, we will not stop!  We must keep raising awareness, money, and hope!  Please consider ways that you can spread awareness.  The more others know that this is a disease that has the hope of being cured in our life, the more that they will be excited to join in on something amazing.  Take a moment to check out our page.  https://www.cff.org/great_strides/FundRaisingSummary/index.cfm?walkID=6573 (you will have to cut and past the link)  I am currently working on another video for 2013.  I love expressing Rachel’s fight in a video each year.  Rachel’s Raise of Hope is truly cathartic as well as encouraging to know that each year we are a step closer to…

                                      HOPE~ BREATH~LIFE

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