• 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

God is Faithful!!

Thankful that this day has come to an end.  It was a day full of seeing God’s goodness, grace and strength.  Although, it was a LONG, LONG day.

IMG_1637

My CF Warrior!

Through much prayer and petition Rachel did a great job all day!  We were at the hospital for 7 full hours.  Most of the day was busy, but there was also a bit of waiting for different doctors.

IMG_1641

Little blurry, which is okay because they are both sticking their tongues out at me. Kim had a follow up doctor’s appointment at the same time we did this morning at that same hospital. I suppose we are glad that we KNOW the hospital well???

 

Rachel was a rockstar with her sweat test.  Mom and dad were able to feel a bit of how it felt to, which was helpful.  I have heard people say that they did not feel the sweat test a bit, and others really struggle.  I suppose it is like anything, there is a different threshold for pain, and sometimes people’s body respond differently. It definitely was a bit uncomfortable.  Not terrible, but not something that I would choose to do everyday for sure.  Rachel had a definitely face of relief when that was done, as did we.

The blood draws were amazing too.  God hand picked a wonderful phlebotomist for her draw.  He was new to us, but awesome.  Rachel said it was the best one ever!  That was an answer to prayer too.

IMG_1645

Rachel doing a good job with the sweat test. Incredibly better than last time!!

One of the hardest things for me to watch was the lung wash.  This test measures how long it takes to completely fill a lung with pure oxygen.  The longer it takes, the more obstruction is present in the lungs.  Today, it took forever.   Again indicative of damage, inflammation, and obstruction.  I was so glad to have dad there as it hurt my heart to watch her do this.  It wasn’t painful, it wasn’t hard, it was just the watching her take breath after breath trying to clear her lungs and unable to do it easily.   I actually had to just sit back and allow dad to be her cheerleader throughout those 45 minutes of tests.

IMG_1647

Dad coaching Rachel to do her best on pft’s. He is an amazing coach!!

The last thing we had to do for the day was have a regular checkup.  (We already did pft’s earlier for the study, and during the study we will not have access to her pft’s results, or be able to share much about how she is doing/feeling .)  The doctor was quite concerned with a pretty significant drop in Rachel’s pft’s , so we had to repeat them.  She was down about 12% from her numbers 3 months ago. She has not ever had that big of a drop in her 10 years of life.  That seemed like a huge blow somehow.  They took a culture to see if a new bacteria were responsible for the decline.   So now we will wait till sometime next week to hear back on that.  The harsh and ever present reality is that while often times Rachel body look no different on the outside from anyone else’s…she has an enormous fight that is daily battling within her sweet body.  This medicine, these trials…they offer SO, SO much hope, and yet we are currently in the trenches.  Uncertainty, fear of what CF will through at us still on the forefront of our minds.  I would be lying if I said that my heart and eyes weren’t near tears leaving the hospital today.  I was fighting back tears at the reality of this cruel disease and the effects on my child.  CF is hard daily, but every once in a while the pain of it still surprises me.  Today was one of them.  I think because I can almost literally touch something that has hope to change my child’s life.  Yet, it feels like we are somewhere suspended between an enormous hope and the crushing reality of what is.

By God’s grace, I was able to put on my strong mama face and thankfully, Rachel did not pick up on any of my emotional turmoil.  She had a smile that lit up my soul.  She nearly skipped out of the hospital, joy exuding her every step.  She knew she had done well.  She knew that God had answered our prayers in a powerful way for courage.  She knew she was DONE for this first day, the hardest day in her mind.

Praise Jesus!  We felt the prayers and power of Him.  He is always good and He always is in control…even in this mama’s prayerful heart tonight.

 

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: