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    Blessed by the Lord for the Joy of family!!

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    Albuterol (2-4 x)
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    Pulmozyme (1x)
    Glutathione Inhaled (2x)
    Advair (2x)
    Prevacid (2X)
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    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)
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    azithromyicin (M, W, F)

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Praying for Healing

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Some fun pictures of my girl taken yesterday. LOVE THIS SMILE!! You can’t help but want to smile with her.

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One of the things that bring her great joy…horses. Beautiful, blessings to see her around strong, graceful creatures.

We have had quite a few medical concerns this fall, as seem so to be our pattern.  Thankfully most times summer seems to be pretty medically quite.  But we have had some changes this fall and things to be watching.  And, for me, every time there is a change in routine, it is difficult.   Rachel has struggled for about the last 8 months putting on weight.  Each appointment we cringe a bit when we have to put her on the scale (we weigh her just about daily, so it’s no surprise to us, however not knowing what the dr.’s will say or do is).  During the last two years, unfortunately her growth has slowed.  She has only grown about an inch total.  This is quite a bit less than a child at her age should be growing.  Girls her age should be growing about 2 inches a year.  Despite good nutrition at the start of this year, she still struggled!

New vest

New vest, called galaxy.  Kinda fun to shake in a fancy, colorful vest.

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Before the tears.

So, recently we changed enzymes back to our old enzymes (Pancrecarb was taken off of them market in 2010 and therefore we were forced to switch enzymes.  The company has since had clinical trials and certification through the FDA and are back on the market with the name of Pertzye.)  We switched hoping that this would be the key to helping Rachel gian weight again.  HOWEVER, sadly, it’s been a HUGE struggle still. =( People who have cystic fibrosis will most likely not be able to absorb their food.  At best, with the help of pancreatic enzymes, they will only absorb about 80%.  There are so many parts of cf that are TMI, however it is the reality of where we are.  We often call it “Poopology 101”.  Feel free to skip over the next bit if you get grossed out by bodily fluids. =)  (When cf people don’t absorb food their stools are sometimes “oily”.  Meaning that we literally see oil droplets floating in the toilet after bowel movements.  Rachel was having this happened several times a week with the other enzyme which means the fat in not being absorbed but rather malasorption is taking place.  We work SO HARD to get the food in, that it is very discouraging to see those hard fought calories in the toilet.  Rachel has been on the new enzymes for about 3 weeks. The adjustment period should be over. Unfortunately, we are still seeing oil about every day or every other day.  I spoke with the dr.s and she is on the upper limit of what is healthy and safe for the enzymes (a persons pancreatic  function determines how much replacement enzymes they will need. Somewhere between 500 and 2,500 units/kg of weight.  Rachel is currently at 2,500 and still having issues) so they don’t really want to go up, but we have to figure it out.  Truth is, if she is “stooling out” two things are happening, her stomach feels uncomfortable and she doesn’t want to eat and she doesn’t’ gain ANY WEIGHT because the food that goes in, come right back out!  We need to figure this all out because it is not comfortable to say the least!!  It is not as bad as it was several years ago when we made the switch, but still not as good as we were hoping for.

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Our easiest test each year. Thankful!

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Lung xray complete. Side profile.

We have gone to cf clinic in the last month. Hospital for blood draws to check for diabetes (SO THANKFUL that isn’t an issue that we need to contend with yet).  This last week we went to the endocrinologist, as the cf dr.’s think that it is not cf related, but rather hormone related.  I was a bit discouraged as the endo didn’t have a whole lot of ideas.   Rachel had a few tests done, but endo thought it was cf related. =(  So…back to square one.

On some good health news, last week Rachel accidentally ate some chicken nuggets that were coated with dried egg white.  If any of you know her history…the fact that she is alive and breathing is REALLY A GOOD DEAL!!!!  She has just about stopped breathing at least once because of eggs and had her face swell up a couple other times and needed epinephrine and a trip to the ER.  So the fact that she ate these, and I didn’t even know until the next day was a HUGE BLESSING!!!  (She even commented on them several times while eating them that they were the best nuggets she had ever had!!)

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I praise God for this child and the constant reminder that comes with her precious life to take every day as a treasure!

We were already scheduled to go to the dr this next week to check allergies, so perfect timing.  Our hope was that we could add peanuts or nuts to her diet.  She is just over the limit to be allergic to these, so we were hopeful that we could add a new food to her diet.  The egg incident has prompted great hope that the Lord has granted her freedom from the enormous burden of food allergies. I only dare to imagine how drastically our lives would change with the absence of food allergies.  Every. Single. Time. she eats we are watching.  And if we are away from home, the stress and anxiety goes much higher.   Eggs have been found in the strangest of places.  Drinks, candy, nearly every baked good, brushed on the tops of foods to enhance there shine…you name it.  Consequently, we are asking and checking and watching for signs of distress with everything she eats.  As much as we have learned to let it be as normal as possible…it is a monumental issue.  It has caused Rachel to be very fearful of food and if I didn’t make it…she rarely eats it.  Kids with egg allergies outgrow this particular allergy about 85% of the time.  Which is great news…HOWEVER, once they have had an anaphylactic this percent goes WAY DOWN!!

We have prayed for this SO OFTEN, I sometimes just plead to the Lord for a sign or a bit of encouragement that this allergy would be gone.  I am hopeful that this “accidental” exposure was the answer to this prayer and that she will be able to eat eggs someday without the fear of death.  Honestly, I sometimes think this is asking too much of God, but THEN…I remember what an awesome and mighty God I serve and I am encouraged in heart.  God is able to do all things!!  More than I could ask or imagine.  So, we pray and ask that His will be done!  But in that will, we ask for Rachel to be completely healed of ALL of her food allergies. She will get tested on Wednesday.  Unfortunately, she has had many procedures this fall.  So much easier than many of our other cf friends, but still so hard to watch the tears, the pain and the fear.  If you think of it, would you pray with us???  We will PRAISE the Lord no matter what.  If she is still highly allergic to eggs, we will thank Him for His protection, if she is not, we will praise Him for His mercy in moving us into another area of healing.

God is ABLE~

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