• 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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Thankful For Peace

This last three weeks seem like they have been full of lots of up’s and down’s with our health.  Rachel has been sick for most of it.  Cystic Fibrosis is a disease of observation due to the fact that we really can’t see what is inside the lungs only what is outwardly shown.  For a while Rachel’s cough has been increasing which is indicative of internal  inflammation or bacteria growth.  After her culture showed the same staph (that she has had since leaving the hospital as an infant), it looks to be inflammation.  We started an antibiotic and then a few days later her cough got a lot worse.  Then we added the steroid.  It seemed to do the trick.  With all of the events of that week, I felt great stress!!  It just seemed that the pressures were all around and that I couldn’t breathe. I truly felt the trials of this life overtaking me.  It is hard to function when you don’t see light anywhere. I  prayed for wisdom, and strength as we are once again in the fight for preserving lung function and staying out of the hospital.  (Some of you may wonder why we fight so hard to stay out of the hospital, cause it may seem like it is easier HOWEVER, the hospital is full of sick people. 1)-Most times cf kids come out with more bacteria than they went in with, and bacterias once acquired by cf lungs are difficult if not impossible to get rid of. 2)-food allergies and trying to keep her fed, safe and gaining weight under the critical eye of the dr.and strange place 3)-trying to manage the family while one parent needs to stay at the hospital at every moment.)
There are those times when you pray and read and yet…you are still just dry and overwhelmed by the gravity of situations.

Well, we come to this week. On Monday or Tuesday it seemed that Rachel might be starting to get a little better.  THEN Caleb got sick.  His has been a very bad chest cold.  After much handwashing, avoiding and praying…Rachel got the cold too.  I know the power of prayer that comes from others.  I don’t have that same stressed feeling.  Today (subject to change at any moment I am always aware of), I feel peace.  It is so awesome to know the peace of the Father.  It is not peace as the world has, but peace that only HE can give.  Am I still worried and concerned about Rachel?  Definitely!  Today, I choose to look up.  I will do my best by doing hours of treatments, reading trying to find the best medicine to give her, shoving food at her every way I can…but I am comforted in the fact that it is up to God and Him alone!  Although there are still many concerns I rest today in doing what I can do, but KNOWING I have a Father that loves me and loves Rachel.

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