• 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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Life and Love

wWe woke this morning to the news that one of our CF warriors has gone to Jesus.  My heart is broken and the tears are flowing.  I have only  a very small fraction of the hurt in my heart that this family is feeling.  But knowing that this is the road that CF eventually leads to with out a cure is devistating.  Please stop to say a prayer for this family, they are going to need it. Her blog is http://notsobrightandshiny.blogspot.com/ She expresses so well the feelings, fears, prayers of so many of us CF mama’s.nsbas.jpgA

Sometimes people ask if I have a good support system in dealing with cf.  The answer is yes, and no.  Most of our support comes from online.  CF is a hard disease because of the time involved and the constant worry over sickness.  My online friends become my support.  While I have never met most of the people that I communicate with, they are like family.  People that understand the heart ache, the isolation, the intense burden that is always felt.  As much as we are thankful for the many friends, and actual family that we have that help and pray for us… it is this CF family that feels our heartbeat in regard to this blessing of a disease.

Last night Paul and I talked about how our family is so different from every other family that we are in contact with.  We had a date last night and we were blessed to just get connected and restored.  The burden of fighting a disease like CF is daily draining.  We talked about how we wish at times that our family was just normal, but in the very next breath we were so grateful for the life that we have been given.  We wouldn’t trade it for the world.!  The calls to dr’s, living in a pharmacy full house, the treatments, the recording of everything, the constant awareness of the environment around…all of these are really blessings in disguise. It makes us appreciate life on a level that most people can’t. Paul and I took some time to be grateful, to enjoy the life we have been given, to rejoice through the light and momentary troubles that we face. We were reminded that God is good and that His love remains.  He is the one who upholds us with His mighty right hand.

So today, we pray for this dear family that is walking through the valley. We lay them before the King of Kings and pray for the comfort that only He can give.

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