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    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)
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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)
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    zyrtec (1x)
    azithromyicin (M, W, F)

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HOPE- And Cause For A Cure

Friday night we went to our first Cystic Fibrosis event.  It was a semi formal event.  (Felt a bit out of place around so many doctors and people of great means.)  However, totally blessed by the amount of people that were there that were willing to help my child and so many others that suffer with this disease.  They had several great speakers and each one of them commented about the families of those with CF.  Parents in particular that  have an indomitable spirit.  We have heard it so many times…”I could never do what you do!”.  I usually smile politely and say something like, “You could and you would. It is about doing what needs to be done out of love for your child. ”  The speakers talked about the normalcy of their lives and how it drastically differs from that of CF families.  While I know this to be true with the hours that we put in on vest treatments weekly and tens of thousands of medications that Rachel takes in a year…it is  interesting to be in a room of strangers that all recognize this as amazing.

As I watch Rachel grow I am reminded how blessed we are...as well as what a hard road she must travel. So thankful she does it with lots of smiles along the way.

 As one of the parents spoke the tears freely fell.  The mom and dad were talking about the strength and joy that comes from the challenges of CF.  They shared how much they wished life were different, and how much CF affects all of their family.  It reminded me of a conversation that I with Nathan a few weeks ago, right around the time he turned 10.  He wanted to know what the percentage was of  Rachel being alive when she turned 10.  I first of course told him that no one knew except God.  I also told him that anyone could die at any point, hence the need to be ready to meet the Lord face to face.  Nathan pressed on with his original question.  I told him the percent was about 95-98%?? that CFers make it to 10.   Then he asked about the age of 20.  Knowing in my heart that percentage drops greatly, I gave him a number of about %70 (even though in reality the current number starts heading more towards %50 in the early to mid 20’s, but we have the advantage of a few more years of quality medication-hoping that makes the difference).  Nathan of course, in his spirit to know and understand what CF means, kept going.  How about the age of 30?  I know that number drops even more, but I also knew where Nathan was going.  He wanted to know what age CF people start to die.  At that point I felt the need to greatly redirect my sweet child.  He worries about his sister constantly!  (When she takes a long nap, he has been known to go up and check to see if she is still breathing.  It breaks my heart! ) I left him with God knowing the number of our days and that we could trust God to be ALWAYS good, and always in control.  With CF, this thought is in the back of our minds constantly.  As much as we would love to never think about it…the disease is a constant reminder for all families of the brevity of life.  I couldn’t help but recognize and greatly relate to the the emotions present as the parent speakers shared their CF story about there little one and the worry of the siblings in regard to CF.  Glad that we were sitting in the back, it is moments like these that you stop to realize how blessed we are, and yet the struggles that we face and the ones ahead yet to overcome.  Day to day it is impossible to really think about the future of CF.  We just do what we need to do day to day to stay healthy.

Living and loving life.

One speaker was clearly a Christian and his talk was inspiring as this week was one of the first times that he had heard anything about CF.  He met with families and walked the hospital seeing the struggles of this life.  He was an athlete, so he compared conditioning to people that had a good day if they had the energy to walk to their car to go somewhere.  That was difficult to hear, because I know that is the road that this awful disease leads people down.  When their lungs begin to fail the simple things of life become impossible.  Taking a shower may be the only thing they accomplish in a day, with out oxygen there is no energy.  But for today…we MUST focus on a cure.

The MC and auctioneer did a great job. I have never been to an event like this so everything was new.  My heart was overwhelmed when he began taking contributions from people.  Started out with $5,000, then$2,500, and $1,000 all the way down to $100.  Each person that raised their hand felt like a hero to me.  They don’t know me and I don’t know them…but they are the ones that will someday make it possible to add years to my child’s life.  There are no words to express my intense gratitude to those “strangers” that felt like friends.  Afterwards, I felt compelled to go and introduce myself to all of the speakers.  I took a picture of Rachel.  I was thrilled to share our heart of appreciation at all this group of people  were doing on behalf of CF.

It was an amazing night for sure.  I am excited to hear how much money was raised for research.  Someday soon…there will be no need for benefit dinners for Cystic Fibrosis.  I look forward to that day with a heart of gratitude to the Lord.  What He does not cure (yet), He gives strength to endure (until).  Praising God today for His strength.

As we begin to prayerfully contemplate doing another fundraiser this next year, hearing the stories of other families that walk this path encourages our hearts to do what we can to make a difference in all of the lives of CF people and families.  A cure is needed, and soon.  My precious baby’s life depends on it!

A smile that lights up the room...even with her two front teeth missing! =) Love it!!

Thank you for listening to my ramblings.  Blessings! Tiffany

P.S.  This week has been full of new Cystic Fibrosis experiences.  On Wednesday I was invited to be a part of a meeting with the Cystic Fibrosis team in planning and helping families and doctors (by seeing life from our vantage point).  It is an honor, and I really see it as an opportunity to share Christ and the strength that He gives us to face this disease.  I will write more on that later.


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