This is Eli

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

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 crud flare up. Five or six days worth of coughing. After that, it was antibiotic time. My son is put on an antibiotic after e-mail correspondence with the CF Clinic coordinator, the lovely Debbie, at OU Children’s Medical Center. When I start to get suspicious that this or that virus has made the bacteria trapped in his sticky lung mucus flare up, I e-mail. We wait a few days and then go with the antibiotic. He’s on Bactirim. I told my sister, Laura, the nurse, who said that was a strong one. Indeed, that stuff knocked the juicy cough out of his lungs in a little more than a day.

Even as his chronic genetic disease made him ill, he’s not sick in my eyes. He doesn’t act sick. He doesn’t look sick. My kid is not a disease or a set of lungs to be fretted over. My kid will never be his disease. He’s a kid. Our experiences are beginning to normalize. I didn’t cry this time, when he started to cough. I’ve been averaging a good, pathetic, cathartic sob/ cold, minimum, since our first real one last summer. Didn’t happen.

Eli is cheeky, and happy, and hungry, and demanding ‘nanas all the time. That’s baby for banana. It’s the only food he knows how to ask for, and thus, every food is now called nana, in his baby mind. Might I add his fave phrases at present are “uh oooh” and an emphatic and amazed “Ooooooh.” On that last one, the inflection in his voice travels up, then down. It is darn tootin’ cute.

Maybe, yes probably, he’ll get “sicker” with time, but I refuse to think about it. Why would I? He’s here now, cherubic and sweet. No need to go into the great unknown, the future, when it comes to his genetic makeup.

Oh, yes, we are entering the do-it-yourself phase with him as well. I found it so endearing this week when he insisted on inserting the tubes into his shaking machine.

Here he is doing it himself, quite pleased, might I add:

Oooooh it’s just so cuuuuuuuute! And then…oh…

Oh, as in oooh, he also wants to unhook himself and run away from the machine he’s been hooked to for 90 minutes a day for almost three weeks. My God, I feel like I’m torturing him.

In other news, we assembled a “big girl bed” for Laila. That means a twin mattress. It’s on the floor. We need to assemble the frame, get a headboard and, obviously, adorable little girl bedding.

She stayed in her own bed last night for the first time in months. Maybe her crib, which had converted to a toddler bed, was just not that comfy. It was oh so lovely to awake without an arm or leg in my face.

And with that, I’ll bid you goodnight.



Hi there! Sometimes I write about Eli and his lungs. If you’d like to read from the beginning, click this here category and scroll back.


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