• 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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10/9 Days till the Walk

While this is a plate full of medicines…this is also represents life, breath, research, brave CF warriors who are no longer here, but most of all it represents hope!  Hope that soon there will be medicine that makes CF symptoms preventable instead of just prolonged.

This was the medicines from 2010, we have since added 5 different medications to her arsenal to fight CF daily. WE are thankful for each and every one of these! God is good, and we are thankful that He provides what we need today!

The Great Strides walk is in 10 days (or 9 counting today as my kiddos remind me)!  MAY 14, 2011 walk starts at 10:30  We are so excited for this walk.  Nation wide this is the largest event to raise money for CF.  It is the main source of funding medical research for CF.  (I am excited this year because most all of our fundraising is done before the walk.)  There are hundreds of these walks all over the US in an effort to develop better medicines.  When I look at this plate full of med’s I am so very grateful that so many before us worked to get THESE to us.  These were parents that didn’t have the hope of seeing their children make it to high school, or some even kindergarten.  And yet, they worked tirelessly!  We benefit from their work and and sweat and tears.  These walks are part of that work!  Please join us.

In the CF community there are many people that do trials that they know won’t help them, but they do them to give the little ones a better chance at life.  It is touching and inspiring.  Each and everyone of the medications on this plate represent the selfless giving of someone.  It is great to have the real medicine, but someone had to get the placebo and try to figure just exactly how the dosing would work. Pretty cool to think about the sacrifice of so many in order that Rachel’s breathes a bit easier.

We have great hope now with some of the current medicines being researched. This is one of the most hopeful times in CF history.  Not only for our disease, but CF parallels many other disease in its breakdown, and by solving some of these cellular issues, it is ground breaking for many others.  The technology is there, the last pieces are being put together.  Money and awareness help with that process.  Recently a friend said, “Well, we don’t really have money to give, so we won’t come to the walk.” .  She was promptly told her that any time there are large groups of people gathered, “others” pay attention to that!  Some of those “other people” may just be the one that has money to help further our cause and bring about great change!

Over the last months our family has been humbled in so many ways!! God is big, and He cares for our  needs.  Even the ones as simple as knowing that others care about the giants in your lives, and are willing to give of whatever time, money, talents and work to make it better.  Blessed by the Lord.  Contact me if you have any questions about coming to the walk.  WE WOULD LOVE TO SEE YOU THERE as part of Rachel’s Raise of Hope!!  By the way, it is a lot of fun too. =)

Hanging with the storm troopers, here to fight CF one step at a time!

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