• 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

Eating…and more eating


So whether you eat or drink or whatever you do, do it all for the glory of God.

1 Corinthians 10:31

The most common food eaten by Rachel for at least the last....4 years!!!

We have an appointment tomorrow for an Occupational Therapist!  While I am happy for this appointment, I am also dreading it.  One of the things that I have been told by many others is that we have to figure out a way to lesson the stress around eating…or at least not share it with Rachel!!!  Good luck!  I know that it is possibly, but only with the Lord’s help!!  The stress related to food with CF is so intense!!  Not only do you need good food and fat to be absorbed to gain weight.  Fat is also part of the development of the brain.  With CF we know that at best ONLY 80% of the food consumed will be absorbed!  (Our CF dietitian is pretty sure that Rachel’s enzymes aren’t even working that well evidenced by the slow and difficult weight gain with the new enzymes.)

Those factors alone are tough to deal with, but then when you throw in the equation what the doctors do know about CF longevity as it relates to weight- it sometimes throws me over the edge.  One of the few connections that the doctors/scientist have been able to make in reference to how long people with CF live is related to their body mass index.  Those with a BMI over 50% live longer.  If you are under that 50% it is expected that you can shave 10 years off the life expectancy age.  (That would be fine if that number were in the 90’s…but it is not YET!)  The “predicted” median age is 37 (Notice this is predicted, not current.  Also, median is not the same as average.  At last clinic the doctors said that the average has moved up some this last year to around 25 for males, little less for females.)  Even if we use the number of predicted at 37, 27 still sounds really young!  If you use the 25…let’s just not!  All of that to say, there is incredible pressure to be up in weight all the time.

God has blessed us with a mild winter as far as CF goes.  Rachel has only had 2 colds and they have been among her mildest.  He is good.  However, even with the mildness of the colds, this last cold Rachel had she lost around 4 pounds.  (The coughing is a workout and calorie burner in and of itself, and then the antibiotics usually make her sick and not feel like eating.)   She is S-L-O-W-L-Y gaining back some (about 2 pounds of it in a month of CONSTANT WORK ON MOM AND DAD’S PART!!!).  Her enzymes are working just good enough to keep up, but not enough to really help her to get ahead when she falls behind.  We still haven’t been able to add super high fat and calories back into her diet.=(  So we really feel like this OT appointment is an answer to prayer.  Often times Rachel’s mouth gets plain tired of chewing food up.  And because of the early on feeding issues (nothing consistently by mouth for the first 5-6 weeks of life) there are still some oral challenges to getting the food swallowed once it is chewed up.  She often gags on her food if she can’t figure out what to do with it.   Sounds weird, but there is food coming at her ALL DAY, not to mention a mom and dad who are relentless at times.  We know that Rachel has had trouble eating for as long as we could remember…but we have hope in the Lord that He has brought us to this spot so that we can get some answers to help her.  Thank you for your prayers and I will update you on what we find out tomorrow.


2 Responses

  1. Would love to hear how the OT goes. We are in the same boat as you with the eating…urg!!! Unfortunately we have no real access here in Hawaii to people experienced in feeding issues with older kids. So any hints you could share would be awesome!!!

    blessings to all 🙂

    • Sorry to hear the eating saga at another house=(. It really is tough! I do know that there are some OT’s that were trained by a woman names Dr. Kay Toomey at the STAR Center in Denver CO. Here is the email of the clinic, marygarlington@yahoo.com maybe they can help you find an OT, or at the least give you some ideas too. I will pass on whatever hints I can (providing I get some, I have been told this is a REALLY LONG process=(, but happy to have some hope.) Blessings to you and your family.

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: