Eli would like you to know how he feels in 4 scenes

He’s raging against the machine today.

Now he lets me know how he feels about “That’s Not My Kitten.” He says he’s in the mood for “Infinite Jest.” He’ll probably finish it before I do.


Whoopi Goldberg, can you hear me?

Dear Whoopi,

Hey Whoopi hey. How’s it going?

Continue reading Whoopi Goldberg, can you hear me?

M. Abscessus, All bark and plenty of bite

A word on a Superbug, by a UK blogger who caught one. It’s good reminder to eliminate damp conditions at home, for those with cystic fibrosis. Eli doesn’t use a nebulizer yet, but it seems like it will be important to boil any medical breathing equipment after every use. We don’t have a dishwasher, and probably won’t ever, because dishwashers are Petri dishes. We have eliminated baby toys like rubber ducks that are damp inside. And I’m flipping out because Eli ate dirt over the weekend, of course. Learning makes me crazy, but it’s better to know. And now back to trying to act like our lives are perfectly normal, nothing to see here, nothing to fear here – except super bugs. Eli has an appointment next week at the CF Clinic. He’ll have his throat swabbed to see what, if anything, is growing in his lungs. This makes me anxious every time. Much love to this blogger, who has been battling a bug for four years.

The Hidden Rose Thorn


How are we doing? Another day into May, and still so much more education to be served. Today is all things Mycobacterium Abscessus. Before you skip this meal, I think it’s very important for all Cf sufferers, Parents and Carers alike, to read this. I am no Erin Brockovich, and I promise you, you would never see me wearing my heels to test water samples! But, even if you haven’t been proven to have M Abscessus, doesn’t mean you don’t have it!

It is about time, somebody spoke up about this superbug and I think many are not being addressed of the danger of this infection. I’ve been shut in the dark repeatedly about this and unfortunately for Doctors and CF specialists the answer ‘There is not enough substantial research evidence to predict’ will not suffice for me. The proof is in the pudding ( excuse all these food…

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