Wednesday, December 12, 2012

CF Round Up: Prayers, Food, and PFTs


1.) The Saint Andrew prayer, during Advent, is very special to me; Rees' health is always one of my specific intentions.  But this year, I grew up a little more and have changed it to a cure for CF (Thank you, CF friends who live inside my computer!).  My other intentions are for Ken's job situation and my patience situation.

2.) Lots of reading on essential oils for managing CF.  Some seem magical.  I'm reminding myself that if something could kill pseudomonas without damaging delicate pulmonary tissue, our doctor would know about it.  But I like the word manage instead of miracle (well no, I love the word miracle...) and managing is how I'm using them: Breathe blend and tea tree oil for Rees; On Guard blend for Addie and everybody else.  Oh, and Whisper blend for me. If anything, we smell wonderful! They can be purchased here.  (Warning: it's very hard to choose!)

3.) Addie's weight for height ratio is less than 50%, so per the doctor's orders, I'm giving her something solid twice a day (Actually, he told me three or four times a day but the sassy little thing is not complying.).  Greek yogurt mixed with banana, sweet potato, or avocado is a hit; oatmeal and ice cream are not.  She still nurses 6-8 times in a 24 hour period and her lungs continue to be clear.

I bought an amber necklace, too.  Don't know if it works, but it's a lovely decoration!


4.) Rees' checkup yielded 20% declined PFT, so he's on ciprofloxacin for 10 days.  If there's no improvement, then a 2 week tune-up at Providence Hospital.  He'd been dancing around being sick for a few weeks (little extra cough, little extra congestion) but felt fine and thought he'd done great on the PFT.  Oh well.  Can't fool around; he begins college classes January 9!

5.) And, OUR CLINIC HAS BEEN ACCEPTED FOR PARTICIPATION IN THE VERTEX STUDY!  This, my friends, is magical stuff, as it corrects the basic defect in CF (a folded protein that messes up the chloride channel within the cells).  We, like everyone else, hope for the drug and not placebo.  God's will be done.

Time for more Christmas shopping; our lessons have been reduced to mathematics and reading stories . . .

Happy Advent!

1 comment:

  1. So much to say...I miss you so much!! I want to "talk oils" with you, for one thing. I have thought of you SO much with regard to these, in the past couple months I've been researching! We're trying some for K's epilepsy. Like you, we're at least smelling wonderful! ;)