• 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)

  • Recent Posts

  • Monthly Archives

  • Advertisements

Countdown for CF walk- 9 DAYS


I am going to do a countdown this year to the CF walk day.  (I was going to do 10 days,  but…like is common around here…life was really busy yesterday.)  So…here goes.

Fact#1 The difference between a Cystic Fibrfosis lung and a normal lung is less than 1/3t. of water.

Why am I so desperate/excited to walk?  It is for my baby girl.  I want her future to be bright and clear. 

This month has been nonstop crazy busy. Our Great Strides walk is May 8th and so I’ve been doing all my last minute fund-raising. Finding businesses that would be willing to help, making tshirts, writing last minute letters, finishing her cf video. We are doing everything we can think of to get the word out that we need help.  It has been energizing to see so many people willing to help, heart breaking, and very crazy.

With NO government funding these donations are our only hope. I have fallen in love with the people that are empathetic and can take a minute to imagine what this race against time would feel like. If everyone would do that and not just turn their emotions off because this makes you feel too much it would make all the difference in the world. I have found there are two types of people in this. One FEELS and can imagine what it might be like to hurt like this, to fear for your child’s life, happiness and future. When you take the minute to “feel” what it might be like you would be willing to give up that cup of coffee at Starbucks and donate $5 or $10… Then there is the other type of person. I try to imagine it is like when we go to the movies. I NEVER pick a sad one. I always tell  people real life is sad enough I don’t need to go there. I chose to surround myself with the happy things in life. I think that some people see a child is suffering and they stop right there. They don’t read on because that would make it too real and they would rather not “see that movie.” The problem is it’s not a movie it is what people really live through. This is my reality and even worse, this is Rachel’s reality. She is just a child. Life should be easy and care free. She should not worry that a cold is going to give her permanent lung damage or worry about her next breath. Now for the people that chose to be in group two. The ignorance is bliss group imagine this… You want to just live life and feel happy (who doesn’t?) Now imagine the happiness you would feel being part of something huge like saving lives from suffering. You could be part of a CURE! What on earth would feel better? A cure is in reach and you could know in your heart that you kept the research and trials on track, getting these meds to us and SAVING LIVES. This is not an impossible disease to cure. It will be done. We just need help to do it sooner. The sooner part is where my baby girl comes in. As the days fly by she grows and the world keeps turning. Everyday she goes without help shortens her VERY precious life. This is why I’ve been MIA. I can’t stand the thought of it. I will do my part and more if I can add days for her. She deserves it. She’s MY baby. Help me if you can.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: