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12 ways to fatten a toddler
Who doesn’t want to be skinny and rich? Eli. He wants to be fat and wild. Fat and wild I gleaned some tips today to help keep my tot chubby and full of energy for climbing the furniture, bein’ cheeky,...
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A thank you note from Eli
I’m not too shabby at saying thanks, but I’m terrible at putting notes, or anything, in the mail. Come to think of it I’m across-the-board behind in this finer detail of polite social behavior –...
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Exercise ideas for Eli and other toddlers with cystic fibrosis
run eli run Good evening. I’d like to share a list of ideas I got from Eli’s Cystic Fibrosis clinic here in OKC for tot exercises to benefit little buddy. And, note to self: find Rocky Balboa-inspired...
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The cupcake at the end of the marathon
Funny, I remember I said I’d write about fitness this week. Trying to blog to rules like “Write fitness stories only” is like….uh…I’m brain dead. I got it! It’s like, when you go to write a news story...
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Buddy and the bubbles
Today, we fit in some extra physio for Eli’s cystic fibrosis by attempting to get him to blow bubbles. He sort of got it. He dipped the wand in the bubbles, waved it around and them blew in the air....
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Let’s get physio, physio! Then let’s get Waffle House, Waffle House!
My week of writing about Eli and different games and therapies – physio! – to keep his lungs healthy has come to a close. While I didn’t get to write as many posts on this topic as I would have liked,...
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Tears at 37,000
Alex: The Life of a Child No, it was not the best idea I’d ever had to read “Alex: The Life of a Child” among strangers. I knew this book was going to rip my heart out. But, when else was I going to...
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7 questions about cystic fibrosis with writer, NPR commentator Frank Deford
Yesterday I wrote about the emotional experience of reading Alex: The Life of a Child, by Frank Deford. Today, I’d like to share an interview with the author. Deford’s reassuring voice is familiar to...
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“Life goes by so fast/ And our story’s defined by how we spend that dash.”
After I made it to D.C., I met up with my longtime friends Will and Megan, and their ‘lil baby Ms. El. Ms. El baby wasn’t too sure about me and my 24/7 desperation for hugs from an Eli-sized little...
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The real way I found out my son had cystic fibrosis
EliI wanted to share the real way I found out my son had cystic fibrosis. In the scheme of things, it’s a blip. It was an infraction perpetrated by a young and inexperienced worker. Or was it an...
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Whoopi Goldberg, can you hear me?
Dear Whoopi, Hey Whoopi hey. How’s it going? I realize this is a one-way conversation with the Internet in this moment. Yeah…I have no idea how to get a hold of a publicist for a star so big. Doesn’t...
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Baltimore Ravens Quarterback Joe Flacco reveals his connection to cystic...
I spied Baltimore Ravens Quarterback Joe Flacco at the 2014 Cystic Fibrosis Volunteer Leadership Conference in Bethesda. Do you know Flacco? Here’s a primer: Baltimore Ravens Quarterback Joe Flacco...
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A little tot cough (can stab you in the heart)
We’ve all been sick and run down in the past week or so. – one after another. First me, then Eli, then Laila, and now Mark! Woo! Sore throats, cough, fever. Is it strep? I dragged buddy to the doc and...
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The one-week spending m and 7 other budget ideas
There we were, toting the kids in our wagon, rolling, rolling toward that debt-free pasture in our dreams. Ya! We got stuck in the mud. Sorry, Oregon Trail flashback. Although it would be more likely...
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Sick? or, siiiiick
Eli caught a cold that started to go away and then got stuck in his lungs. He’s not sick. He’s siiiick. As in, rad. But srsly–this is sick? He started to get better, and then it appears we had a CF...
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Something good: medical research has led to an advancement that could help Eli!
Good news here I’m excited to share: A 2-drug drug combo has helped people with the same type of cystic fibrosis as Eli improve their lung function. Eli has two copies of defective gene the DeltaF508....
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Auntie Carrie’s corner: 6 healthy, tasty, robust recipes for toddlers with...
Aunt Carrie just stepped up her game. Aunt Carrie, stepping up her auntie game. Fierce. Carrie is Mark’s smart and savvy sis who happens to sell nutritious baby foods to hospitals. She’s a dietitian...
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Eli’s new vest
There’s an air of excitement and suspense around here when Eli’s vest machine needs new parts. I’m not sure why it took us so long to order a new vest. We have had to duct tape him in the thing so it...
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Eli would like you to know how he feels in 4 scenes
He’s raging against the machine today. This is how we feel about our vest this morning #cysticfibrois https://t.co/aHs4mns18H — thisiseli (@hithisiseli) July 27, 2014 And this…#cf #cysticfibrois...
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In pictures: A little boy’s experience at the cystic fibrosis clinic
Today marked Eli’s appointment at the cystic fibrosis clinic. He sees his pulmonologist every three months. Eli has developed strong opinions on just about everything. He says just a few words these...
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