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    Albuterol (2-4 x)
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    Pulmozyme (1x)
    Glutathione Inhaled (2x)
    Advair (2x)
    Prevacid (2X)
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    Glutathione oral (3x)
    L-Arginine (1x)
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    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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Appointment today

Wish I could tell you some amazing things, but really it was a little bit of a waisted time.  The doctor was great!  He was really kind and most of all honest.  My primary Dr. sent all kinds of records in to him, however our CF Dr.s did not (or at least he gave them the benefit of not being able to find them if they did).  Uggg!!!  He said that he could do very little with out records of previous tests done. After I got over the initial frustration that the CF doc’s set up this appointment and thought it was vital for us to go…and yet did not do their part in sending our records-we did try to do some problem solving.   There was one medication that he suggested we increased to help long term liver function.  (This last blood draw she had a elevated liver enzyme which is fairly common in CF, but keeping her liver healthy as long as we can is of great importance too.)     He also stated that he did not want to do labs today until he knew exactly what the CF doctors were thinking. He had some things that he wanted to check, but wanted to save her pokes until he had all of the pieces-and could poke once for multiple things.  I greatly appreciated that.   I tried to explain the best I could with the enzyme issues, but he thought if the old ones worked it was more in how they worked that we needed to focus on and to try to simulate that with the  new ones and additional medications if we needed.

So…all in all it was a rather quick, uneventful appointment.  Hoops to jump through.  Oh, but Rachel did like the fun “sticker payment” that she got for going today, and was so happy when we were leaving without “owies” or pokes.  God is good and we are going to claim that He is solving her issues with enzymes.  I can not tell you how much it means to us to know that we are being prayed for!  God uses it in amazing ways.  So I thank you for listening, caring and for praying!


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