• My Family

    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)
    Prevacid (2X)
    Ursodial (2x)
    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)
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    zyrtec (1x)
    azithromyicin (M, W, F)

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My God is Faithful!

Sometimes the intense emotions of having a beautiful child fighting for their life and health day in and day out is…gut wrenching!   You watch every little sign and symptom hoping it’s nothing yet knowing at any point that it could be a really big deal!  We have had some days of that lately! =(  The kind that bring tears to your eyes and an uncertainty of how the future will look.  Writing is my way of processing a bit of the hard that comes in getting to love such a special child.  Today, all I have is tears.

Rachel has been slightly unwell since we came back from her Make a Wish trip to Hawaii.  First a pretty tough virus.  And since then a cough that just won’t go away.  I actually did something that I have not ever done in her eight years of life last week.  I asked to come in and get a pft test done and sputum culture done. (We do them at every 3 month appointment and when she is really sick the dr.’s have asked us to come back in the check theses numbers, but I have not ever just felt the need to do this.)  I asked a few friends to pray, and we went to the doctor.  Something has not been right, but not able to figure it out.  Maybe her allergies, maybe her asthma maybe something new?  Unfortunately, usually with a kiddo with cf if something is not right, there is usually a reason.  =(  However, to my relieve her pfts were normal, and her culture came back this week with only the normal bacteria that she cultures.  So…the mystery continues.  She is still coughing a lot and on top of that has now lost over 6 going on 7 pounds since her last appointment. =(

So we have been talking with the dr.’s the last two days since our cultures came back and we are trying to get a game plan for treatment.  Tonight they called and want her to come in and check her blood sugars tomorrow.  That was totally out of the blue for me.  I know that diabetes is a concern with cf due to the pancreas already not working, so diabetes is always a possibility.   Our clinic starts testing kiddos pretty young for CFRD.  However, when they said that some of the symptoms that she is presenting with are very similar to CFRD (Cystic Fibrosis Related Diabetes) it felt like a punch in the gut.  Most of the time I feel like I can hold it together and deal with the crud that is thrown at my baby girl, but somehow this feels like that yucky reality kick again.  I am sad for her!  I am really, really sad that she has to endure all that comes with this horrible disease!  Food is already an enormous mountain to climb for her with her food allergies, and the amount of food that she must eat…my heart hurts to have her even have to consider yet another issue.

Rachel has been extremely emotional the last few days.  Not wanting to do her extra treatments, crying over having to eat more than she wants, and just all around not totally herself.  I think between coughing a ton day and night, not sleeping well, not eating well, feeling like she is going to throw up at every meal (mom and dad constantly hassling her to eat) then top it off not breathing well…she is just wiped out.  I can not even start to imagine what goes through my precious girl’s mind.  It causes my mama’s heart to hurt!  It causes me to cry out to the Lord for mercy.  I know that there are so many, many more that have it so much harder than my sweet Rachel, but she is just that…my sweet Rachel.  The one I love!  The one that I treasure!  The one that I want to see grow old.  I wish that I could take away her pain, I wish that I could take away the anxiety of the unknown that this disease seems to throw at us. I am truly praying that whatever is going on with her today is nothing too big.  I guess it is all about perspective.  Last week I was hoping that we were not facing our first tuneup admission…I guess that looks a bit better than the lifetime of CFRD.  If you think to pray, please pray for the health of my baby girl and also that we can figure out what is causing her so much grief.

Right now Rachel is outside playing basketball with dad…I will go and be part of that joy and cherish each one of my kiddos!  LIFE IS PRECIOUS!!

Just wish that CF didn’t have days like today,  a reminder that this road is hard, uncertain and filled with turns.
BUT MY GOD is faithful and He is true!  Holding onto His hand today…despite the tears.




2 Responses

  1. I just prayed for your Rachel. I understand how you feel and how sad it can make you — I think my Bethany is almost the same age as Rachel. I will continue to pray for her and that you will find answers — hopefully whatever is going on will turn out to be minor.

    • Thank you. Not often am I happy to go to the dr, but as I listen to my girl cough this morning, I am thankful that she can get some help from all of this coughing. =)

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