• 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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Appointment Day

It is another day for Rachel’s Cystic Fibrosis check up.  It is so funny and amazing how these days make me feel.  I am usually very pensive and a little on edge the days of her appointments.  I think it is because it is such a clear reminder of the difficulties of this disease.  In the same breath though, I am very thankful for the grace and strength that God has and continues to give us in relation to this disease.  He is glorious.

This appointment may take a while today because we have to figure out a plan of action with Rach’s enzymes.  We are now winding down on our a supply.  I think we have about 1,500 pills left.  Depending on how she eats (she is taking between 6-10 a meal, so depending on how much she eats in the day that is somewhere around 40+ pills with snacks included).  That is about 37 days.  My heart is starting to feel that great pressure again.  It has been amazing, since this whole enzyme thing occurred, I have gone through many stages of fear, frustration, anxiety, and peace.  I have felt peace for the last 2 months or so.  It has been good and God given.  Obviously the problem has not changed with her enzymes, but there is nothing I can do about it, but pray and call the people to bug them about our issue.  I have done that!=)  Anyway, so hopefully today the clinic will have a game plan for us to at least start working on.  One huge praise is that her weight is AWESOME right now.  She even looks a bit chunky (for a cfer). I am not quite ready for our next battle with weight and medications!!  But with God I can do all things!

I am going to pray that this appointment that usually takes anywhere from 3 to sometimes 4 hours or more is a super quick one!  It is a beautiful day today and we want to go out and enjoy it!!!! I am also praying that Rachel’s numbers are a little higher than they have been.  Last winter did a doosy on her lungs.  At times her FEV’s were in the 50’s.  That is terrible!!  To give you a gauge, I think they start talking about transplant when that number is consistantly in the 30’s.   Now obviously we are decades from that we pray!!!  But that does give you an idea how love her “5  year old” numbers were.  They did go back up to 79% this summer, but still those are not great numbers to have when she is so little.  Her lungs are at there best right now. The doctors say to not focus on those numbers too much, but….how can I not?  I hear all the time about people/kids having numbers over a 100%.  The more lung function to me equals better health, I don’t know if that is actually true or not.

Last night at the dinner table we talked about life in 20 years.  The boys were talking about how they would be married and have kids.  Nathan looked at Rachel and said you will be living with mom and dad- both Paul and I said, oh no.  She will probably be married too, and possibly have kids.  It was a weird thing to say what we are hoping for in her life.  Whenever we talk about the future, I speak as if I know that we will get that opportunity, and yet there is that twinge and great sadness of reality that smacks at my heart….maybe?  Once again a reminder that God is in control and that our kiddos are on loan.  They are His- we just get to love on them while He allows.  I am so very grateful for the joy that He brings us with our precious children.  So thankful that I serve a good and gracious God!!

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