This is Eli

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

Eli is an opinionated fellow.

He only says “Mama,” “Dada,” and “Yaya,” and the occasional “Baby,” but he still tells us a lot. He has perfected his baby yelp, which helps him express displeasure. If he wants to be held he finds his way to me with a combination of crawling and cruising. I don’t know why, but there is something in his cruising around — stepping his way from a couch to a gate to a chair to me — that reminds me of parkour. When he reaches my legs, he holds up his hands and unleashes a yelp. His laughs and smiles tell us when he’s happy, and he laughs and smiles a lot. Windows or his view from the stroller make him happy, as does opening things and closing things and throwing or rolling his ball to us. He’s calm when we are moving together in the fresh air.

A new favorite spot: the cabinet.

A new favorite spot: the cabinet.

His baby dislikes include being gated in or held back in any way. He wants to move. Baby gates are enemy No. 1, outside of diaper changes. He sees me grab a gate and starts hollarin’. When the gate’s up, he pokes around and tries to see if he can take the thing out and escape somehow, seeking an entrance ramp for the the highway to the baby danger zone.

Eli is figuring out how to move in his world, and how to take control over his baby heart’s desires.

It’s a good thing — he’s growin’ up just like he should.

When it comes to his time-intensive care, things can get a little tricky.

To break up the thicker, stickier mucus in his lungs, he is strapped to his vest machine for an hour a day. When he starts to get a cold, that time goes up to an hour and a half or more. I pound on his back, too, periodically, when I’m holding him. He really won’t sit still for much manual chest beating. I really don’t know how families without a vest machine do chest physical therapy with a toddler, especially a 1-year-old. They’re too little to follow directions to stay put, and too big and strong to control while squirming.

That’s why I really can’t complaint about the chest PT time — we have a vest, and it makes our lives much much easier. Still, buddy can and does complain sometimes. I took some vids during our rather challenging session yesterday. Some days, he’s just not havin’ it.

During his vest sessions, we play with him or read to him and put out toys he likes.In those ways, the sessions are actually really positive, because we’re on the ground more interacting with him. I make sure to include Laila, too, because I don’t want her feeling left out or ignored. Yesterday, we put on Bollywood music via the Internet radio, dance and rolled a ball around. Eli still had a few baby meltdowns.

The saddest thing I ever do see is buddy tryin’ to crawl away from his vest machine and being stopped by the tubes holding him to the thing. He starts to cry and rock back and forth to break free. Pretty soon, he’s going to be strong enough to do that. He’s nobody’s fool. I usually sit with him if he’s moving around, so I can lug the machine to where he wants to go, poor little guy. But when all else fails, Yo Gabba Gabba saves us. It’s a drug for little buddies. They are so mesmerized by DJ Lance Rock and his weird little friends. We can easily trick buddy into extra vest time by running episodes back-to-back.

These days, Eli does have a cough. He caught a cold in the end of December. It started with a running nose. Then he got little coughs. We amped up his vest machine and pounded on him extra for over a week. Instead of going away, the night before last, his cough got deeper and more frequent. I e-mailed his clinic coordinator, Debbie, and she agreed an antibiotic was called for at this point.

He started a 21-day round of it yesterday.

This is how our care routine changes when he is sick. I might advise — if you are a parent of a younger CF child reading this, do not dismay. The list is intimidating, but it somehow just fits into our lives. Before noon, 3/4 of it is knocked off.

Our care routine at 1 year

Our care routine at 1 year

I admit, yesterday, with the latest antibiotic round, I got really really sad. Had I done something wrong? Usually, I would e-mail or call the clinic a few days sooner. We just wanted to wait and see if he could kick the thing on his own. It seemed to be fading away before it got worse. Then I was sad he needed another round of antibiotics. I wasn’t carrying on or anything, I was just…subdued. Quiet. I wished for him that this latest round of crud would just go on its way without medical intervention. He’s moving on, transitioning from baby to toddler life. Is his disease in transition, too? Am I ready? Is he? Are we? What does this mean?

I felt the weight of worry on my shoulders. I have many questions without answers. I don’t like uncertainty.

Maybe I should just not worry about all of those x factors until I have to. It’s a strategy that works well for me.

Dr. Royall told us that Eli in his second year would be much like Eli in his first. We’d focus on wellness — his own and our family’s. We’d work on Eli’s nutrition so that he grows well. We’d continue to do his daily chest therapy.

Our family is different now than in Eli’s first year. Laila is in school, learning letters and numbers and making friends. She’s bringing home one cold after the other. Even as our hands are literally cracked and bleeding from washing, the germs get around.

We can’t lock ourselves away. Getting out into the world and bringing home colds is all a normal part of life. A friend of mine from high school became a lung doc. She said studies have shown the CF kids who are not kept in a bubble will do better long-term. Disease or no disease, each little buddy needs to shore up his immune system.

I just remarked to Mark yesterday that our family needs to plan something to look forward to — a little trip somewhere, perhaps.

It can be anything, just not related to any duty or obligation of any kind. We have enough duties.

In the mean time, I’ve decided Eli needs some baby friends. We’ve really kept him isolated this first year. As long as the little baby friends aren’t sick, there’s no reason for him not to play.

This morning, I dropped Laila off at her preschool and talked to a few mamas there.

One moms has a daughter Laila really likes and a cute little 10-month old baby son. I proposed to her that we get together with our little boys while the ladies are at school one morning. I did mention Eli’s CF, too. I mentioned it because I’m still hesitant to let him play places like baby gyms during cold and flu season, or at all, really. I am more of a coo coo germ phobe than your average parent. Another friend of mine has an adorable 4-month old girl. We should really all get together and form a baby circle at someone’s home — mine, if I can whip it into shape!

I think this shall occur.

Dr. Eli

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7 thoughts on “Eli at 1 year, cystic fibrosis at 1 year

  1. Lisa Sankey says:

    Over the holidays our son’s vest died. We normally do 3, 30 minute vest treatments a day, so Christmas Day, while Max played video games, I had him sit on my lap and did CPT, I told him about the times he was a baby and we’d sing Old McDonald to him to keep him entertained. So there I was with my qo-year old, 76 pound “baby” on my lap, reliving those days. Fortunately, the replacement vest arrived the next day as he really doesn’t fit on my lap anymore for cpt. 🙂

    Like

  2. Bill Ellison says:

    Julie, you have such a talent for writing. Sure appreciate keeping up with the Fam thru your blog.

    Soon will be walking!! Best to you guys.

    Like

  3. Sheila Graziano says:

    Thanks for this update, Julie. Love that you posted the video – makes that part of Eli’s (and your family’s) daily routine so much more tangible. You convey both positive outlook and realistic fear for the future, the challenges of daily life, your ability to keep things “normal” in the face of a demanding medical routine. If cyber-hugs are of any use at all, I send you MANY!

    Like

    1. j&m says:

      Thanks! Cyber hugs are appreciated and e-felt!

      Like

  4. Chris Ellison says:

    Thank you for your wonderful blogs Julie. I can’t tell you how much it means to me to see Eli’s beautiful little face and to see him moving and scooting about. Eli could not have picked a better set of parents to care for him. It is no coincidence that Eli is a very happy, chubby, thriving one year old. Much love, support and prayers for a cure.

    Like

    1. j&m says:

      Thx!!!!!!! hugs!

      Like

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