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    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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Pills..Bills…God’s Strength

Well you all have seen Rachel’s famous pill pictures.  I am learning a pretty good lesson this week about being grateful for the little things in life, the unappreciated, the things that you just take for granted.  Those little white/blue pills to the left of her plate…make the difference between Rachel’s food being absorbed or not.  The process of not absorbing food means that with out these little pills before every meal or snack mean major stomach cramping, bloating, foul oily stools, loss of vital vitamins and nutrients, loss of weight, and ultimately loss of total health.

Rachel has been on this particular brand for over 3 years.  When we first started this journey we tried several different kinds.  We were told by the dr’s that they were all the same.  We soon found that not to be true.  Once we found these, life has turned around a bit.  Eating is still not an easy road, but it is soooooo much better than it was before.  Well, the situation has changed this week.  Up until now these vital suppliments have not been regulated.  (People know that they work because of the direct results of not having them.)  The FDA mandated that these become regulated complete with clinical trials.  The company that we get the enzymes from did their work and submitted it in October of 2009 knowing that there was a deadline of April 28th.  That date has come and gone and the paperwork is still sitting at the FDA waiting approval.  However, we can no longer get the enzymes covered.

There are three companies that have approved enzymes.  We have tried 2 of them previously with horrible results.  So this week we have tried the third and newest enzyme.  I was really hopeful that they would work, but rather doubtful.  Well, my fears have been confirmed.  We have been on them for over a week now and have had all of the classic symptoms.  Yesterday Rachel was at a park and kept coming to me holding her stomach.  She did not want to play.  She just wanted to be held.  For any of you who know her, that is not her.  She is such an independent spirit.  I knew she was in pain.  For the last week it has been a struggle to get her to eat, and now the stools are crazy and very painful.  SOOOOOOO  frustrated.  It feels like such a rock and a hard place.

We did get news that we could buy them outright at a small price of $1,292.52 for a months supply!!!  ARGGGG!!  What is a mom to do?  P-R-A-Y and then wait for the Lord to lead.  I know that He will.  Last night Paul and I spent over 2 hours calling or email several people in the FDA, the manufacturer, senator, and every other person I could think of.  Last night I prayed for direction, and researched some other ideas.  I think I have some good leads today. So….I will begin with prayer, perseverance and the power of CHRIST!!!  Although it has been really hard to watch her struggle and hurt…we trust in the hand of God for healing and strength.  He is good all the time and all the time good.

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2 Responses

  1. […] Rachel’s mom is my friend Tiffany.  Tiffany was one of my first friends when we moved to Omaha.  We were in a Bible study together with a handful of other ladies.  We used to meet at Tiffany’s house and she quickly became a dear friend.  We were pregnant at the same time and had our oldest boys just a few months apart.  Tiffany and her husband Paul now have 4 kids…two boys and two girls.  Rachel is their third child and Rachel was born with Cystic Fibrosis.  The plate that she is holding in the picture is full of the medicine that she has to take every day.  The blue and white capsules on the left are enzymes that help Rachel to absorb the nutrients in her food.  These enzymes are essential for Rachel and right now they are having an extremely difficult time getting the necessary enzymes because of some issues with the FDA.  Tiffany does a much better job of explaining the situation so please take a minute to read her blog. […]

  2. Praying for you today Tiffany and I am calling on my small army to pray too. He is faithful and will provide. Much love to you…

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