Addie's Eats

I picked up a few items for Addie this afternoon and asked Clare to unpack, which she did with her usual artistic flair, then snapped this photo:

Did you know that Reese's Puffs, along with Cinnamon Toast Crunch, has 3 grams of fat per serving? Highest I've found, excepting granola, which she can't eat yet without any masticating molars! And that the "grabber" pouches with yogurt have fat (only 1 gram, but we'll take it to get enzymes swallowed)?

If you have kids without CF, they will be mad at you for not buying donut sticks and peanut butter cups for all of them and they will orbit the highchair like sharks, waiting for the baby to offer tidbits.

She also really likes the boxed "very high calorie" drinks from Boost that our CF clinic gives away. I, however, don't like her diapers when she drinks them, so they shall remain on the shelf for a month or so before we try again.

She's doing fine, though, at just about 18 months. She's needed antibiotics three times and steroids once, and weighs in at 19lbs, 3oz. Small but thriving, especially in the dirt.

(Rees is OK, too, gaining strength after a crummy few months and raising his lung function, even though the doctor said he wouldn't.).

Happy weekend, friends,
Love, Allison

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!
Warmly,
Allison