• My 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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June Check up

Rachel had her quarterly check up today.  It was a pretty decent one. Not great, but not terrible…which makes it just okay.  Her weight was down 5 lbs., and her lung percentage was down 6%.  But other than that, her X-ray’s looked normal…HUGE PRAISE, and she sounded good (although that never makes me feel better as our favorite dr. said you can’t necessarily hear when things are bad until they are REALLY bad.  Also need to follow up with endocrine for some strange hormone issues. But…we are definitely thankful for the “not too bad” day at the hospital. And a bonus, we were only there for 3 hours.  Yahoo, we could get used to that.

I often have to be reminded to be thankful that we “GET” to wash these nebulizers. There is a pile of them. This is just a couple of days worth (some nights the thought of washing and sterilizing these before bed, is overwhelming). BUT…so thankful for the gift of lifesaving medication.

One thing that I wanted to write about was a situation that we encountered in the waiting room of the X-rays today. While Rachel was changing into those glorious gowns, we heard two women chatting in the outside waiting area on the other side of the curtain.  They were talking about being old and how hard it was to be old.  We came out and they continued to chit chat and lament on how terrible it was to get old.  The longer I sat there listening to this conversation go on the more I looked at my girl and COULD NOT for the life of me stop my thoughts.  I entered into the conversation several times about what a blessing it was to get older.  What a joy to have the privilege of growing old, and a few other comments in our time there. Learned these ladies names and how many children they had and so on.  But then they returned to talking about their bodies falling apart. I could tell they were looking at Rachel with a kind of strange look like she couldn’t possibly understand being so young.  Finally after the one woman said again, “Growing old is not for the weak” I could hold my tongue no more.  Hate when that happens, but my mouth spilled over. And I shared, “There are many that would like the hope, honor and privilege to grow old.  It is a gift.  As I sit her next to my girl with a life shortening disease like cystic fibrosis, I hope and pray that she remembers this conversation when she is an old woman!”  They both stopped and kind of looked at me.  I am sure that I gave them some perspective today. They asked what CF was and we (Rachel with her smile) and I shared a quick synopsis of what CF was.  It was an odd encounter, but it was one that struck me like the person when pregnant that says, “I don’t care if it is a boy or a girl, only that they are healthy.” That one hits my soul in a weird way as well.  My thought so often (which I keep to myself most times), is what if they baby is not healthy…then what?  Do you love them less?  Absolutely not.  Much like getting older. Sure we all struggle with bodies that don’t work like we wish they did.  But for my girl, she has had a lifetime of her body not working like she wished it did.  Yet, she soldiers on with such grace and strength in the midst.

What a reminder today to myself as well to look, ponder and consider the many things that I complain about that truly are a gift and a joy.  My often messy house, my loud children, my busy schedule…aren’t there many people that would love to struggle with these things, and would see them only as a gift? I love it when God gives me these little moments to recognize the gift he has given us in this terrible disease of cf.  Perspective.  And, a bit of wonder at the frailty of life and the future.  It is all His, and I am so glad that it is.

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