Let’s get physio, physio! Then let’s get Waffle House, Waffle House!

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:

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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You are my sunshine

Running

The Spanking

My sisters and I were spanked as children. At least, the threat was always there. I know we got it on occasion, but I don’t have a specific memory of being hit. I only remember my mom running around saying:

“Where’s my shoe?”

Yes, a shoe. She’d swat us with a loafer when we got out of line. Did it hurt? Since I don’t remember being hit, ever, my guess is no. We’d always looked back on her line about the shoe and laugh. She was somewhat zany with her disciplinary tactics. Some mothers yelled or hit their kids when they misbehaved at the grocery store. My mom started dancing in the aisles, embarrassing us into silence.

“I’ll stop dancing when you stop fighting with your sister,” she said, unleashing a torrent of awkward moves in front of the cereal.

Any how, with my mom and her shoe, the threat, the indignity of a swat, was an effective discipline tool. Mark and I swore off spanking. Then we had a child with a chronic illness. Then our otherwise healthy child, with a hacking cough, spewed her germs into his face on purpose. And if ever there was a time to make a point with a thwack across the bum, that was it.

A spanking is the “Oh, hell no” of parenting.

Laila caught a cold the other week. Laila loves getting into Eli’s space. This presented a problem.

Before Eli came around, I worried about her being jealous and maybe even hurting a new sibling. There was one errant chest bump to his crib. Can you blame her? We were bent over the thing, losing our minds messing with poo bags 24/7.

Buddies
Buddies

Laila loves her brother. Keeping her from snuggling Eli seemed to be my only problem after she got a runny nose and cough following our trip to St. Louis. It would be the same way if Eli didn’t have cystic fibrosis, a chronic disease that makes the body produce thick sticky mucus. It’s never great for a new baby to catch something. Eli has more at stake. The mucus his body produces is especially problematic in the lungs, where it encourages bacteria to thrive. An infection can create scar tissue that robs a CFer of lung function they’ll never get back. Not every case of the sniffles will go to Eli’s chest, other CF moms have assured me. A lot of colds just stay in the head and throat. I nevertheless fully anticipate falling apart the first time I spot a runny nose on my buddy. Because he has never been sick, because all of this is new to me, I am terrified of his first illness.

I got a few infant surgical masks from the CF clinic, just to have around. They are the cutest, saddest things ever. Each teensy little mask is dotted with Disney characters.

Buddy
Buddy

I decided to try one out after Laila, my sweet, loving little girl, hacked on Eli. On purpose.

She stood over his little blue baby chair and coughed in his face. I told her not to do that. She had probably forgotten our instructions about coughing away from her brother, thought I. She’s still just a young little thing. Then she coughed on him again and stared at me.

I get it. She’s 2, almost 3. We’d been telling her to keep back, to never cough around buddy. She’s a kid. So she did the opposite of what she was told, just to see what happened.

What happened? Mommy lost her head.

“NO, Laila NO!” I yelled louder than I’d ever yelled at her before.

“You can hurt him. Do you understand? You could hurt your brother.”

She thought my outburst was funny. Now, I can see where a face contorted in anger would be pure comedy to a toddler not used to seeing it that way. In that moment my reaction was more of an internal: Oh, hell no.

I swatted her on the bottom. She didn’t think it was funny anymore.

“Go to your room!” I ordered.

She started to wail.

The swat was not hard, really more of a mild thwack. However, Mark and I hadn’t ever thwacked Laila’s posterior before. I wanted to make a point, not hurt her. I still felt like crap. I worried I’d overdone it. Talking to Mark about it later, he said it was OK. This scenario was different than your run-of-the-mill shouting “No” at us, or not listening or throwing food. Those are the types of infractions that are more typical of wee Laila.

I walked up to Laila’s room 20 minutes later, after I cooled off and washed Eli’s face. She was sitting in her closet with her head down. She wasn’t crying. Her silence expressed a state of sadness beyond tears.

My heart broke into a million tiny pieces. Not the fake James Frey lying to Oprah kind. I felt terrible.

“Mommy’s sorry she got mad, baby,” I said.

I realized I’d never explained to Laila why her brother was different. Why we needed to work together as a team to keep him healthy. Why we hooked him up to a vest machine, washed our hands all winter until our knuckles cracked and bled. Mark made up a song for her: “Gotta put the lotion on so we don’t get crocodile skin.” He sings it just about every day.

Laila accepted that her brother spent over 30 days in the hospital without asking why. She only knew that that’s where she went sometimes to play and see baby “Eyi.” When she met him in the neonatal intensive care unit for the first time, she stared at him in silence and patted him on the head. I could have watched this scene all googly eyed all day long, but visiting hours for children ended and Laila had to stop pat patting her new best buddy and leave him in his hospital nest.

Sitting next to her in her closet, I did my best attempt at explaining cystic fibrosis to a little girl who was almost 3. I told her again how we cough into the crook of our arm.

Did she understand?

She nodded her head.

I hugged her, my first baby.

“Mommy loves you Laila. Do you understand? I love you.”

She whispered, “Yes.”

I still felt like crap.

“You’re a good girl. You’re a smart girl. You would never hurt Eli on purpose. Will you help Mommy and Daddy to keep him well?”

She shook her head yes and hugged me tight.

“I love you baby,” I said.

Guh.

She walked down the stairs with a stoic little face, coughing in the crook of her arm. For days, when she heard “Eli,” she would cough into her arm as if his name were Pavlov’s bell.

Yes, I made an impression on the poor girl. Maybe too much of an impression. I’m new at this. I don’t pretend to always know what’s right.

Even with Laila re-trained at the proper way to block a cough or sneeze, and on the reasons it’s important, I thought I’d see what it was like to put a mask on Eli while Laila was running around him sick. This experiment lasted about five minutes.

It’s been almost a week since Laila’s cold cycled on out of town. Eli never did catch it.

Here is little man in his mask:

Eli in his infant mask. It was short-lived, and pretty cute.
Eli in his infant mask. It was short-lived, and pretty cute.