This is Eli

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

I tried really hard to be pathetic. I poured a glass of wine that was more like 1/3 of the bottle. I got under the thickest, warmest blanket we own in bed and called my sister to cry. Not my proudest moment, perhaps, but every human has license to be ridiculous now and again. What set …

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Any cold Eli catches can flare up the gunky stuff his lungs hold. It is called a “CF exacerbation,” which is, basically, a bacteria party in Eli’s lungs. That is what happened in September, and then October, and again, potentially, in November. We’ve reached 60 days of hacking and counting after three rounds of antibiotics. …

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Here’s the short version of this story: We went to Boston and received from Vertex the equivalent of a corporate pat on the head. If you choose to read on, I’ll provide some details. Details Eli and mom traveled to Boston, lugging an over-sized carry-on that contained a machine called ‘The Vest,’ a backpack full …

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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 funky stuff his lungs with some science. Pulmozyme is supposed to reduce lung infections by about a third. The PARI eRapid, straight …

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