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    Albuterol (2-4 x)
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    Advair (2x)
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    Vest (2-3x) 30 minutes
    Percussion (30 minutes)
    alpha lipoid acid (1x)
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    azithromyicin (M, W, F)

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Storms and Sickness~

First of all, I must say that I am SO VERY thankful for the time of health that we have had recently.  Rachel was sick about the first of the year and hasn’t had any lung issues to contend with since.  We compare this time to days full of sunshine!

Unknown-6I have been trying to figure out how to express this post on sickness for a couple of weeks now.  You see several weeks ago we all had the stomach flu.  It started with our middle girl.  At first we thought it was because she had eaten an insane amount of hot cheetos (please don’t judge, it is and has been her favorite snack since she was old enough to snatch them off of the table and long before she used real words, add to that being number 4 in birth order…and it is, just a sad reality.).  Anyway, she got sick, and then we waited.  You know the kind…you wait and watch and wash everything while holding your breath a little to see who will be the next.   Well the baby was next.  (No surprise as the baby was next to Shiloh on the sorted, and sickly ride home.)  =(  It was a few more days, and then we began to hope that her sickness was because of her allergies or another strange occurrence.  Well, we didn’t need to wonder too long.  Less than 24 hours later it went through most of the rest of the kiddos.  Some just feeling icky, and the rest actually getting sick.  Rachel was one of them that got sick.  She had a rough night and then several days where she didn’t want to eat.

I don’t even know how to explain the difference between a tummy bug and a lung bug for Rachel.  First of all, this was only about the second, maybe third time Rachel has ever gotten a stomach bug, thankfully.  I am sure that this played a part in the peculiar and interesting emotions that were felt.  Knowing that it was a tummy bug, actually allowed us to feel a bit more relaxed.  That probably sounds crazy to most of you.  Yes, it was a pain cleaning up bedding, clothes and “messes” from a sick child.  However, really, most of the time she was sleeping or laying on the couch just feeling miserable like the rest of the kids did/were.  We worked hard to still get medications in and keep it in.  And, doing her vest was a bit of a challenge shaking on an already icky tummy.  However, a tummy bug did NOT result in hours of extra treatments and fear that this could be something really, REALLY big and dangerous.  It was something that we knew would likely pass, albeit a pain, it was something that could pass in about 24 hours.  What an amazing feeling…RELIEF is the only emotion that comes to mind!  Hubby and I related that this is how “healthy families” feel about most all sicknesses and colds.  It was a compelling emotion.  It caused my heart to long for this reality.

We long for a day when a CF is just a side note, to be endured and not feared!!

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Here is a picture taking from a fellow cf mama. This is a broncoscopy of her daughter (she is the same age as Rachel). The first picture is from several years ago. Tons of mucus, and yellowy, gunky looking airways. The second…after 2 years of an approved medication (it is for a different mutation that Rachel, but researchers are piggybacking on this research to try to help Rachel’s mutation!) Can you see those pink and CLEAR airways???? What a hope for my girl someday!

AMAZING!!

It is hard to believe at times that CF is getting closer to this day of finding a working medication for CF.

a simple nuisance would BE AWESOME!

 

While no one likes to have the stomach flu, being able to someday look at CF in any sense of the matter the same way would be nothing short of a miracle!  Where a cold could actually just be a cold, or tummy problems came because of a virus rather than a disease that tries to destroy from the inside out!

We desperately pray for a day when CF is viewed the same!

CF=An Unpleasant Nuisance!
CF= Bothersome!
CF=Challenging BUT Controlled!

ANYONE of these would be an incredible blessing!

images-1

Thankfully by mid to late week everyone was feeling well again.  It certainly felt like we had dodged a simple storm.  Every sickness feels like a storm brewing.  Some storms are a light rain, some strong winds, while others are full of devastation.  Unfortunately, we are not ever sure how the storm will play out.  It is a matter of trust and resting in the goodness and grace of the Lord to care for us!  Unknown-5

This week…another storm may be brewing.  Megan has a cough.  Not sure if it is due to allergies, or a cold (unfortunately, it is often hard to tease out the differences until after the fact).  So while we await the next storm, we pray for the light, gentle rain and protection from the harsh winds that may blow in the area of health and wellness!!!

Blessings to you~ 

 

 

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