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    Blessed by the Lord for the Joy of family!!

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    Albuterol (2-4 x)
    Hypertonic (2x)
    Pulmozyme (1x)
    Glutathione Inhaled (2x)
    Advair (2x)
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    vitamin d3 (1x)
    Cal/Magnesium blend (1x)
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    Creon 12 (6 with meals and snacks)
    Vest (2-3x) 30 minutes
    Percussion (30 minutes)
    alpha lipoid acid (1x)
    singulair (1x)
    fish oil (1x)
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    zyrtec (1x)
    azithromyicin (M, W, F)

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1 Day Till The Walk

#1 fact.  There are over 33 new therapies currently in development to treat (and possibly) Cystic Fibrosis.  CF does not receive any money from the government for research due to it being an orphan disease (less than 30, 000 people).

This week we have been busy getting our shirts finished for the walk. We have been making signs, sending emails, and making phone calls to friends and family that are part of our team.  It has been fun, encouraging and uplifting.  However, last night as we were talking about the details of the walk, Rachel was very sad.  She wanted to know why she couldn’t go?  She was pleading with us to go.  She wanted to know how old she would have to be before she could go?  It broke my heart!!  Finally I told her that when she was 10 that she could go.  In the back of my mind I was really thinking by the age of 10 we could realistically have a cure for this dreaded disease!  It seems such a long way off, yet it did give her some hope.  It also provided hope for a heart-heavy mother who is at times so tired of this fight. The fight to stay healthy, the fight to avoid germs, the fight to make her do what she does not want to do every day, the fight for over 59 medicine daily,  the fight for the thousands of calories that we force her to consume.  BUT….I am thankful for the Lord who fights for me (us) when I (we) have no strength left!  He is good and His love endures forever.

As much as I am tired of this fight some days and would love to just have the normal mom worries, I am blessed beyond words.  The Lord had a purpose for our trial.  He has a plan and I am thankful that He has allowed us to be part of it.  As much as sorrow and pain come from being in my shoes at times….there is so much joy there too.  I am thankful for these shoes!  “God is near to the broken hearted and upholds them with His mighty right hand.”  Thank you Lord for your enduring love.  Please fill us with your peace, kindness and strength.  As we walk tomorrow let us rejoice for the many blessings that you have bestowed on us! As Rachel’s shirt says, “Let everything that has breath, praise the Lord.”

**Some of you have asked why Rachel doesn’t walk.  She can handle the physical part of it, but it is not a very safe place for her health wise.   The first year we were planning on taking her to the walk with us.  When I asked the doctors about it he said, “We won’t tell you what to do, but know that there are calculated risks if you take her.  Some people bring their cf kids so that they can feel part of the encouragement of the day and weigh the risks.”  There are bacterias that only CF people can pass to one another.  At any CF event cfer’s are encouraged to stay 3 feet away from others, wear a mask, and use plenty of hand sanitizer.   Others cfer’s may have a “bigger”  bug in their lungs that is waiting to be shared.  While it is true germs are EVERYWHERE this is just one place that we care not to have to worry about Rachel catching something new.  The longer she goes with out some of those bigger bugs in her lungs, the longer and better off her life will be.  She gets to hang out with one of her favorite people in the world tomorrow, Caysie.  While she is still sad, bless Caysie for being so sweet and kind to our little girl.

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