• 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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Update…Don’t Know???

John 10:10 “The thief’s purpose is to steal and kill and destroy.  My purpose is to give lie in all of it’s fullness”

Not sure what to write about Rachel’s enzymes.  I desperately wanted to write that we were out of the woods and that we had totally figured out the equation.  But not sure that is the case yet.  Rachel had a good first day and a half with the higher dose enzymes (Tuesday evening/Wednesday afternoon),  but then Wednesday evening things were starting to go down a bit and then all day yesterday she had tummy troubles and lots of trips to the bathroom.  Last night she was laying on the ground moaning and tugging at her tummy. =( For those of you that don’t know Rachel, she is extremely independent, and to my amazement at times really doesn’t let CF stand in her way.  A hangnail might send her into a fit, but when it comes to CF stuff that you would expect her to struggle with it is a different story.  Even when she is really sick  she doesn’t complain, she must have a high pain tolerance.  There have been times when she sounds like she is coughing up a lung and even throwing up due to the thick mucus, but as soon as the discomfort passes she is smiling and happy again in the midst and despite her illnesses.   So when she does complain, you know she is really hurting.  Soooooo……please keep praying.  Also, as a side note, she is still loosing daily!  Ugg!! That is the bigger issue with CF since weight and lung function go hand in hand.  Going into the winter months, we had a good reserve, but it is all gone (2 1/2 pounds down which = 7,500 calories that we need to make up beyond her daily need)!!  I am hoping and praying that it was a fluke with the terrible tummy aches, but still we have the weight gain problem.  If the enzymes are in fact doing what they should be, we should see ounces going up on the scale, but that has not been the case.  Last she had the lowest fat meal that I could give her and I am going to try to do that again today to give her tummy a good break.  Unfortunately that puts us further behind calorie wise, but…don’t know what else to do.

I am going to call the dr’s as soon as they are in and try to see what they want to do next.  Just so desperately wish the company that made her other enzymes were still in production.  Feeling a little down this morning, but know God is able!!!  Glad I serve a God that knows the way.  Yesterday for our devotions, we read John 10 a parable where Jesus was telling about the good shepherd.  His sheep hear his voice and follow.  I am so thankful that we don’t need to walk this life alone!  Even if it is hard at times, it is not without a shepherd to guide us.

John 10:10 The thief’s purpose is to steal and kill and destroy.  My purpose is to give lie in all of it’s fullness”

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