• 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

Understanding CF

Knowledge is a weird thing sometimes.  It is powerful.  Somehow in understanding Cystic Fibrosis, I feel like I am better able to cope with it, whether it is true or not.  I am a very visual person, and since most of what is horrible about CF is hidden, from the start I was on a quest to “see” what CF did.  I now feel like I have a very loose grasp ( I say loose because although I feel like I know quite a bit from research and a bit clinically, this is a CRAZY disease that seems to manifest itself in a thousands different ways.  I have heard it said that no two CF cases are exact…and the more I understand, read and see the more I find that to be true.).  However the quest continues, and soon, hopefully I will understand better how the new treatments and eventually the cure will function.

Nathan was super proud of his poster. Of course by the time everyone was gathered around it...it's a party!

Nathan made a poster for the CF spaghetti dinner where he had the chance to study and understand CF from a child’s perspective.  I am going to post a couple of the great resources that were found.  I think it has been important for Nathan to understand this disease.  Unfortunately for him, he understands the long term effects of what this difficult disease means for his sister.  Although at times he is definitely JUST Rachel’s brother arguing and vying for attention…there are so many times where he is her biggest cheerleader.  He is such a compassionate kiddo!  I love that about him.  Last year was a pretty difficult year for Rachel, and unfortunately he saw the “crud” of fighting for breath several times.  It scared him to watch her struggle (as well as seeing us go into survival mode when needed).  Since last year, Nathan often wonders and asks about her health.  There were several families that lost young children last year to complications and CF.  I wish like crazy that he didn’t have to know about CF… but the truth is…we do.  I need him to understand that this is a progressive disease.  More times than I would like to have heard this last winter Nathan would comment on the fact that “Rachel was still asleep!”  If she slept in, or took a long nap, he was constantly scared that something was wrong with his sister.  In and through making this poster, I think it has put his fears to rest, even if just a little.  Yes, we know that CF in it’s current form, will more than likely take our baby girls life someday.  And anyway you look at that…it is tough to understand and deal with.  However, I think for a child to know that CF is a progressive disease and that more than likely we will get warning when things are going downhill, is a good thing for him.

So, here is some of the information that we gathered.

This a great picture that shows the areas that are affected and how the mucus moves through the airways.  The picture below gives a much more detailed description of the complications from CF.

Both of these posters were very helpful in showing Nathan that there are many complications, but also that there are many things that we can do to help Rachel.  Prayer of course being the best, followed by consistency in medications and lung therapy, and finally daily exercise to strengthen and clear mucus.

With that knowledge, Nathan thinks it is fun to help Rachel run and exercise.  It is really fun to see his understanding, and his desire to help.  My prayer is that each one of our children will love, serve, and help one another for all the days of their lives.  I want them to be each others biggest “cheerleaders”.   It is neat to see a little bit of it now as it relates to Rachel and her CF.

On the bottom of  Nathan’s poster he put a little tag that said, “Made with love by your brother.” .  The other really cool thing on his poster was his little statement of faith.  He wrote, “With God all things are possible!”.  Love it!!

If you look closely, you can see his tagline on the bottom, as well as his signature of love to the bottom right.=)

Advertisements

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 )

Twitter picture

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

Facebook photo

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

Google+ photo

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

Connecting to %s

%d bloggers like this: