This is Eli

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

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, I got lots different ideas from dipping into this area. I look forward to trying them out and writing them out.

A big part of Eli’s therapy is the chest physical therapy we do each day with the help of a machine called The Vest.

The Vest

The Vest

This isn’t exactly ‘exercise’ exercise, but it’s a daily practice for good lung health that we never skip. We rattle up his chest to get the mucus in his lungs to circulate. He doesn’t cough yet regularly, except when he’s sick. As he grows we’ve been cranking up his machine. That thing pounds on him. Sometimes I hold him against my chest and do stunningly accurate impressions of Darth Vader.

Some poo poo The Vest as less effective than actual physical beatings on the chest and back designed to drain the lungs. I’m not sure which is better. I tend to hit poor buddy on the back and chest after his vest when he’s sick. I’ll do as much as he can take without starting to holler and kick. It does get things moving. I can’t imagine him taking it as well as the baby pictured in the handout below. That toddler has a pleasant smile on his face and appears to by lying totally still as his parents beat on his chest in a variety of positions. (PAHAHAHAHAHAHAHAHAHA, that would never happen to us). If we didn’t have The Vest, we would do the below for an hour a day with Eli. I don’t imagine it being a pretty scene.

Chest physical therapy:

View this document on Scribd

In other news, Laila helped me feed Eli this morning. We are done with formula after this. Whole milk for you, kid!

Mom's helper

Mom’s helper

Next, Laila started cuddling with little buddy. As evident in the below photo, Laila is not a child who smiles every time she’s happy. She’s not a sullen little girl either. She’s my precocious shorty, a thoughtful soul whose current interests run the gamut of superheroes, wolves, vampires, bugs, princesses, forts, pirates and flowers. She collects rocks in her purse on every nature walk and performs dramatic skits for strangers at restaurants. She likes to announce ‘That’s my brudda, Eli,’ to those who don’t know.

'My brudda'

‘My brudda’

Today, while feeding him, she announced, “I’m never going to hit him again.”

For a bit of physio and a bit of fun, we took the kids to a park to run ’em today. Mark taught Eli to howl like a wolf.

On the way back from the park, we passed a Waffle House. I haven’t eaten at a Waffle House since 2007. I remember it distinctly because I was on the way back from a Tennessee music festival called Bonnaroo. That now seems like two lifetimes ago. I’m not the music fest type. I’m the type when, some drug-addled teen throws up and passes out on your tent, I go to alert the festival volunteers. The festival volunteers do not share my concern that the psychedelic youth is about to swallow his tongue. They have no idea where the medical tent is. They say things like, “It’s all part of the experience, man.” And then I take it upon myself to get help, guided by the dread-locked, the body-painted, the patchouli scented, the acid-tripping naked girls in the mushroom fountain. It takes an hour, but we find the medical staff. And then I find my way back to my tent, too tired to attend the next show at 7 p.m. A buzz kill like me has no place at any music festival. Point being: on the way back we went to Waffle House. The smothered hash browns hit the spot.

I had a point – right. Point: We drove by Waffle House today, and, much like in 2007, veered off the highway for mid-day waffles and hash browns.

Despite Laila’s earlier vow that “I’ll never hit Eli again,” she bopped brudda on the head with the blunt end of a spoon and fork, sparking a Waffle House time out.

That was that, and then to my horror, I found out Waffle House has begun including calorie counts on all food.

The plate called “One egg” had something like 440 calories.

“What do they do to their eggs, inject them with lard?” I remarked to Mark.

I got a kids meal. Burger and hash browns – what a combo! Four dollars, one of the lowest calorie items on the menu at 500, and the waitress didn’t even look at me funny. Laila and Eli got waffles n meat. Mark got a burger.

We @#$#^#$^ love Waffle House.

Moving on…

For the third week of May, I’d like to write more about what I learned at the CF Volunteer Leadership Conference I attended in the D.C. area in April.

Thanks for reading. Have a pleasant Sunday!

Here is Laila being sweet to buddy boy as she feeds him. I got video evidence. They are so sweet to each other, except when they’re not. Sibs.


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