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Cystic fibrosis claims life of Chilean girl who begged to die
I’m saddened to learn that cystic fibrosis took the life of Valentina Mauriera, the 14-year-old Chilean girl who begged to die after spending her life fighting the same terminal genetic disease that...
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Smoothie every day: Melon-o-maniac
Melon-o-maniac, the smoothie obsessed with its own power. Watermelon season is in full swing. How could I not concoct a smoothie to pay tribute to this lovely melon? Here it is: 2 cups diced watermelon...
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State of the Eli: My son’s quarterly health progress report.
It’s hard to believe, but Eli is 2 years and 7 months old this month. Mark took him to his latest quarterly visit with the cystic fibrosis clinic. This has been the case for the last few visits due to...
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Smoothie every day: The PB&J smoothie
Hiya. I’ve been drinking smoothies and toying with recipes all week. Namely, I’ve been messing with grapes. I don’t want to post a recipe unless it comes out the way I want, but next week, grapes will...
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Saying bye to nannies
It started with Nanny X. I thought she was it. The one. Tops. That swingy pony tail. Those pie eyes. That earnest, can-do attitude. Scam. Scam. Scam. Nanny X phoned me at work while I was pumping for...
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Immunity and the gut: Will shoring up buddy’s “good bacteria” keep him well?
The gut is the largest immune organ in the body, with more immune cells than the blood, bone marrow or spleen. Get a grip My stomach flu episode, and Eli’s start at a new preschool, has led me to focus...
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Bruiser and me
Thirty pounds of rage can flip chairs, shatter sound sound barriers and thrash at your heart, one so full of love for this little bruiser. Seems at nearly 3 Eli has decided he has a lot to say about...
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Problems, problems, how you gonna solve ’em?
Sometimes you just gotta write through the fog of despair to find clarity. That’s what I did Saturday, starting at 5:30 a.m., before my kids were up, so I could let go of a crummy week and have a fun...
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TV news crew visits house, Eli refuses to wear pants
Panic strikes as I remember my make-up is in my gym bag at work. There is knock on the door. It is a TV reporter and cameraman. My son is eating cereal in his diaper. The TV reporter and cameraman...
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A cystic fibrosis drug price spiked 9000 percent one year to the next. These...
Did you hear about that cystic fibrosis drug that spiked in price 9000 percent from one year to the next? Neither did I. We need to wake up. This is happening. It’s going to happen until it’s curtailed...
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No bake cashew coconut bites
Here’s a recipe courtesy of the weight loss nonprofit Tops.org. Let me know how you like it! No baking is my kind of baking. I’m in the midst of the Healthy 65. It’s a 65-day wellness challenge. Sign...
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Eli is in the hospital for the first time with lung issues
Hey everyone. It’s been a rough week, and between working and taking care of buddy, I tend to sit down to ‘relax’- ha- at 11 pm, at which point I pass out. Eli got sick over the weekend with a sharp...
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Eli: Like a boss
Eli earned a new nickname this week: Boss. He did the best he could to boss everyone in his world, everyone trying to mess with him. He is 38 pounds of piss and vinegar. He’s a boss. Want to take the...
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Little pitchers, big questions
I drove Laila to school this morning. She’s 5. “Wanna listen to my phone music, Daddy’s music or NPR?” “NPR!” “OK.” I turned it on. A Russian political dissident is dead, poisoned as he took tea at a...
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3 tips to organize your medical life (that I learned the hard way)
I met an Iraq and Afghanistan vet named Titus. Caught up in a Baghdad mortar attack at the start of the Iraq war, Titus came home to Oklahoma with problems he did’t have when he left to serve in the...
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8 days left to purchase a T-shirt and fight greed
Hello, everyone! Good news! You can still purchase a compassion > T-shirt and fund the delivery of a petition that seeks to address runaway drug pricing for cystic fibrosis medicines! There are...
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How to investigate a drug company
Yes, as through this world I’ve wandered I’ve seen lots of funny men; Some will rob you with a six-gun, And some with a fountain pen. -Woodie Guthrie If you, like me, are interested in getting a...
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Saying goodbye to a reader
I never met Sage in person. It feels like I did . Gah, did I? Hadn’t we seen each other in real life? Traded a hug somewhere? At an event? Had we ever crossed paths on clinic day? No, and yet I feel...
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Cowboys, tornadoes and whey
We know a cowboy who can smell tornadoes and loves clean eating. That’s the crazy thing about Oklahoma. People are full of surprises. They are open books down here, even more so than in the Midwest....
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Dragon mom gets a new nebulizer/ Eli gets a cold
The notorious e-Rapid Nine months ago we got a new nebulizer that was supposed to cut Eli’s breathing treatment time down. Right now he inhales a medicine called Pulmozyme once a day to bust up some...
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