• 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

Failed Success?

Just a quick update.  Yesterday was a very hard day for me to sit by and watch.  It felt like I was watching a train wreck happening and couldn’t even scream about it.  I worked hard yesterday, and prayed even harder, to keep my mouth shut all day about food.  I got breakfast ready and then told her what she needed to do.  Set the timer, (put all of her pills in front of her for her to get out and take), and then left her alone.  We enjoyed a pleasant conversation while she proceeded to take 2 bites of food, she may have slipped in three, but seriously I was trying not to pay any attention to her.  The timer went off and we went off to start her treatment.

Lunch came around and I made food for everyone.  I even let Rachel help and put the food that she thought she could eat on her plate.  A pile of broccoli, and a little bit of mac and cheese.  She ate all of the broccoli and did not touch a bite of anything else.   Whew, mama breathing a bit hard at this point.  Knowing full well that she had consumed less that about 100 calories thus far in the day.

We went to the park, and I grabbed bananas for everyone.  She thought that sounded good and ate one (another 100 cal).

Dinner, we had a rice and ham pilaf and celery.  She scooped up celery with delight and said, “I love celery!”  I was working pretty hard at containing myself by this point knowing that celery is one of the negative calorie foods, meaning it takes more calories to consume it than you get FROM it!  She did not touch a bite of her rice.  Timer went off and she happily skipped off from the table after eating about a 1/2 cup of celery.

As we were getting ready for her evening treatment she went over to get potato chips, which is the custom each and EVERY night.  And, dad to her great surprise said, “Sorry, Sweetie, but if you don’t eat your dinner, there will be no chips.  But you are sure to enjoy breakfast in the morning.”  Rachel fussed and fretted over that and even cried a bit.  Finally, something that stung a bit.  Praise the Lord for daddy’s.  (I had just pulled him aside and told him about her salt need for the day after playing hard outside and sweating.  But he stood firm that this is what we needed to do.)  So glad that God gives wisdom to both of us at different times and that we are able to work well together.

After Rachel wiped her tears, she came to Dad and said, “What do I need to eat in order to get my chips?”  He simply said, eat all of what was on  your plate for dinner.  She promptly got out a plate (because she was more than excited to scrape her first plate into the trash after the timer went off), went to the stove and served herself up the now cold rice and ham.  She put a HUGE amount (more than double what she had the first time) on her plate and walked over and ate every bit of it by herself.  SUCCESS!!!  It was only one meal, but PRAISE THE LORD!  She did it.

Seriously, it is the little things in life that bring joy!  I know we have such a long journey to go, and I am quite certain she lost weight yesterday, but we will take every success and give glory to God for His goodness.  It is by the grace of God we walk this path before us.  Praying today is a better day.  Thank you for the prayers!

Advertisements

2 Responses

  1. An encouraging step, Tiffany. Will keep praying…

  2. Standing with you in prayer. Much love from the Gnuses.

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: