• 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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Breath of Life

Yesterday we had the privilege of being asked to go to a volunteer luncheon for the Nebraska Cystic Fibrosis Foundation.  It just so happened that we found a babysitter (thank you to Paul’s wonderful mother!!!) and were able to get out of the house together.  That in itself was a true blessing, but our other desire was that we were hoping to get to meet some other CF families in town that have the same passion for raising awareness and support of  finding a cure as we do.

Breath of Life award- Us with the coordinator for the Nebraska CFF.

We had a nice dinner (all donated by a business,  so amazed at people’s generosity sometimes), and then there was a short program.  They showed a video of events this year aimed at raising money for research.  Rachel’s Raise of Hope was in there several times.  We thought that was really sweet.  Then they introduced that they were going to hand out awards  (neither of knew anything about this part).  As the coordinator began talking, it quickly became clear that they were maybe talking about us for the first award???  You know that feeling right before you are really nervous because it is a little surreal?  Well that is exactly how we both felt.  The coordinator said such nice things about us and our efforts to find a cure for our baby.  As another member of the Foundation was walking back to our table, the tears quickly sprung to the surface.  As I looked at Paul, I noticed that his eyes showed the same type of emotion.  I am not quite sure why it was so emotional, but it definitely was!  Maybe because it was unexpected?  Perhaps, because through this process we have seen so many of our wonderful friends and family choose to walk alongside us sharing our hope to give Rachel a life and a future.  Or maybe because so much about fundraising for Rachel’s Raise of Hope is an effort to change the future for Rachel but somehow in and through it, it is changing us!  It has caused us to step out of our comfort zone, share our struggles of CF along with the spiritual, emotional and physical toil that comes with it.  It has definitely given us a deeper dependence on the Lord, and a hope in the greatness of our God to care about our needs in a real and practical way.  I would not wish CF on anyone, nor would I mind it being gone YESTERDAY!!!  However, the dependence and seeing the faithfulness of the Lord is something that I would NEVER change!!!  (Now, I know even with the new medicines on the horizon, CF will not be cured, but rather controlled.  CF will still most likely present many challenges, but the thought of a normal lifespan with great challenges and work is something that I pray for daily!)  So, while I don’t know what exactly elicited such a strong response…God’s provisions, the intense of love for my child, the hope that she would in fact have a BRIGHT future, friends loving us through this disease… whatever it was I guess I had more than enough reasons to get chocked up a bit. =0

So the fight continues on!  And truly, as long as CF steals precious breaths from my baby…I will CONTINUE THE FIGHT FOR HER LIFE!!!

Thank you for all of your that were part of Rachel’s Raise of Hope team, whether that was by praying, helping, giving, or encouraging us!  It really is the blessing of the Lord through you that we continue to have the courage and strength to fight on.

In His Grace and Strength-Thank you Paul and Tiffany

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