This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

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 enter. Eli sees them, throws himself on ground and refuses to wear pants. So began our little dispatch …

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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 Halloween with the family. I discovered that when you put it out there, solutions float your way. …

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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 the hours of treatments and physical therapy we put him through each week to keep him healthy. He …

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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 killed her 6-year-old brother. After posting her plight on YouTube,  the world responded with love and she changed her mind. Only weeks later, …

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I love restraining my screaming toddler so he takes his medicine. I love the way he moves his feet because my thigh has his legs pinned down, and it’s all he can do to protest. I love the way he screams and shakes his head “no” again and again and again. I love the way …

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Quick note: Eli’s 0-to-crud-in-60-second cough has improved a lot. Daily, he is on 1.5 hours of vest, an antibiotic and breathing treatments of Albuterol plus our new treatment, Pulmozyme for a cruddy cough that appeared out of nowhere. He doesn’t have a consistent cough any more, but he coughs during his treatments. That’s good because …

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