• 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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Overcoming CF and Enjoying Life

Our family loves to be outdoors.  Several weeks before Rachel was born my husband went out and bought the biggest tent he could find (I think it sleeps 12).  Little did we know that with our sweet Rachel and her Cystic Fibrosis, there would be so many “dangers”, “trials”,  “shouldn’t” not to mention the intense “germ awareness” that we would be thrust into the middle of and changed forever!  This is now our life.  We are incredibly thankful for it, but there are many challenges  having an child with “exceptionalities” (love the phrase, thanks, Jackie).  Sometimes we are tied to the CF parameters (like treatments, medications and doing our best to stay clear of sickness), and sometimes it is just a lot of extra work to make life not be about CF or be held back because of it!  It is a conscious choice that we must make daily.  And frankly it is hard, but also so rewarding to know that God has placed this blessing, albeit not how we thought or imagined, in our lives.

Had to stop and take a picture. Rachel did a good job not being too frustrated watching her siblings play and explore while she had to do her treatment. Blessed by her spirit of perseverance and ability to take her situation with the grace that could only come from God!

Siblings trying to wait for Rachel before they went off exploring. (They kept running off, and then coming back...but it was a good time to catch them all together=) for a picture.)

Like I said, we love camping…and most everything about it.  It is a fun time to spend with family, and there is nothing like exploring the beauty of God’s creation.  Anyway, we have not been camping in over two years.  This year we were determined to go camping.  Every time we  had a notion to go, we had heat warnings. It was really hot this summer and with CF the heat becomes a huge factor.  (Rachel has had a couple of near major issues with the dealings in the heat, to make us VERY aware of the dangers of it.)  Anyway, so we were feeling like our plans were foiled again this year…since it is now OCTOBER.  However, God had different plans.  The little warm up was just enough for us to feel like we should try it.  We debated for quite a while!  The work involved, and the fact that Rachel currently is culturing a serious bacteria that comes with added medication, and yet  I really felt like if those were our only reasons…then CF would win.  That made me mad!  I know there are difficulties, but I WILL NOT LET CF WIN!!  We will live life.  We will enjoy the blessings of the Lord.  We will allow CF to be part of our lives (only because we have no choice,) , but will continue to work at not letting it dictate our lives and actions.  This is definitely easier said than done…but today…CF did not win!  We had a fabulous time and made some great memories!  Thank you Jesus.

Fishing poles! What a blessing from Grandma. B-I-G S-M-I-L-E-S!!!

Finishing dinner, and getting the fishing poles ready. Rachel did really well staying clear of the smoke. When we told her to move...she did quickly. Thankful that it was not to windy.

 

The battle that we had going on between our “” and our “spirit” in deciding to go camping.  (This is very typical of just about every
aspect of our day.  As much as we don’t want it to be, it is constantly there coloring our every movements.)

Sense says: Stay in your safe “Bubble” especially since Rachel has cultured Pseudomonas Spirit says: Live life and enjoy each moment with your precious family for our days are all numbered Sense says:  It is just too much work to pack for camping let alone all of the CF stuff Spirit says:  It is worth the effort for the memories Sense says:  Added medication will be difficult, it needs to be refrigerated. Spirit says:  There are coolers and ice. Sense says:  There will be dirt and all of the equipment that we work so hard to keep clean will get dirty Spirit says:  Live life to the fullest and clean it all later Sense says:  It won’t really be fun, because we will be spending a lot of our “camping” time doing treatments Spirit says:  Not every girl gets to look at a lake while she does hours of treatments. =) Sense says:  I am the one that protects and keeps Rachel well Spirit says:  There is only one Living God and He gives everything life and breath.  He has each of our days numbered! Spirit says: THANK YOU GOD FOR YOUR SPIRIT AND GUIDANCE IN OUR LIVES!!!  (While we continue to pray for protection, we know that God, you are in control of ALL things.)

One girly girl and one that was LOVING IT!!

A little "roughing it" while "puffing it". =)

My not so girly girl. She LOVES bugs, dirt and anything that make most girls squeal...it also makes her mom pray hard as all of these pose hazards to her health- when I look at that smile...I am blessed even if it is with a prayer for her safety.

Delightful day with our precious family making memories. Praising the Lord for His goodness and care.

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