This is Eli

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

My 1-year-old needs 200 percent more calories than the average tot. Here’s what breakfast looks like:

Eli wakes up Hangry. That’s hungry-angry. His body doesn’t absorb fat right, because he has cystic fibrosis, and he feels hunger deeply. He can’t express his feelings with words, being 1 and all, and the hunger-anger combination makes him hollar: “Eeeh. EEEH! Eeeeh!”

Anyway, I wake up, and (TMI warning), typically, Eli has gifted me a giant poo from last night’s 200 percent–above-normal dinner. And by giant I mean, it’s hard for me to fathom that whatever I find in his diaper in the morning has come from a 25-pound toddler. Eli eats heavy foods and salty foods. Heavy because he needs fat, and salty because he needs salt. His skin tastes like a Lays potato chip. Eli eats healthy foods, too, but my son eats what everyone else considers too fatty and too salty. He eats the typical American diet! Except it’s good for him!

I wake up, and get Eli from his crib. Not only is he hangry, he hates having his diaper changed. I mean all-caps HATES it. My trick is to give him a book or toy to distract him while I change his pants as sweat beads form on my brow. Now that he’s gotten older he’s gotten cheeky. I give him a toy – say, a little stuffed panda. He looks at it. He looks at me. He throws panda on the floor and yells “Eh!” which I translate to “Oh hell no mama that panda’s not good nuff. BAHAHAHAHAHA!” Then he kicks his legs like a crazy man and starts rolling like a croc in the arms of Steve Irwin (before that unfortunate sting ray accident, OBVIOUSLY). I’m in a panic. I dig around for a toy. I stretch one arm, keeping one hand on his hips to keep him from getting up and dive bombing off the changing table. I stretch and grasp for anything, anything entertaining. Ah, here we go, a tiny book about babies! I hand it to him. He looks at me. Looks at the book. Looks at me. Decides the book is adequate distraction material and begins to thumb through pics of babies saying “Bye bye!” Baby playing “peek-a-boo!” That picture always makes him laugh. I make lightning fast moves to get this dirty deed done before he gets bored and kicks his own poo. Whew.

Eli giggles at pictures of peek-a-boo. He giggles when he says “eat.” He has gap teeth. I know I’m biased, but his giggle is flippin’ adorable. It is the most adorable giggle this earth has seen in the history of giggles.


More proof:

He also says “nana,” for banana.

Next is breakfast.

I strap him into his high chair and say, “Want a banana?”

He gets excited and starts saying. “Nana. Nana. Nana. Nana,” anticipating his favorite fruit. It’s not a “I’m delighted for the forthcoming banana!” type of “nana.” It’s kind of, more like, a hangry and desperate “Nana. Nana. Nana. Nana. Naaaaanaaaa!”

Again, I’m moving lightning fast. To the bananas!

Ah crap!

Enzymes! First, I break two capsules off Pertzye-brand pancreatic enzymes into a cup of applesauce. As Eli is yelling “Nana!” this seems to take forever. On account of his CF, Eli’s pancreas doesn’t squirt out enzymes, ’cause the thick sticky mucus in his body junked up the pancreas’ tubes that are supposed to deliver the things. Here’s more on that. Pertzye enzymes are the only type out right now wrapped in bicarbonate. Also on account of his CF, Eli’s gut system is acidic. This acidic environment can destroy enzymes before they reach the small intestine, which begins just south of the stomach. It’s here the enzymes do their work. The bicarbonate neutralizes the area where digestion occurs so the enzymes can do their job in the small intestine, and Eli can absorb fat and get as chubby as we can possibly make him.

Older CF kids tend to lose their appetites. Keeping Eli fat will be a life-long challenge.

Now, at 1, Eli insists on eating the whole cup of applesauce after I’ve given him spoonfuls with the enzymes.

Moving on to bananas. One hundred calories a piece, those bananas. Today, he had two as a breakfast appetizer following his applesauce.

Little babies have ways to tell you what they are ready for. When he was ready to eat solids, he refused to eat pureed foods. When he was ready to start feeding himself, he rejected our attempts to do it for him.

Eli is in a DIY feeding phase. It’s nice, because he’s more independent now. It’s also messy.

He’s still just getting used to working the spoon. He’s getting better, but when I’m not paying attention, he dips his fist into tapioca pudding/applesauce/cereal bowl and smears it all around. ‘Cause that’s how 1-year-olds roll.

After the two bananas and applesauce, he had a small bowl of cereal with whole milk, half a waffle slathered in butter, another cup of applesauce and half of a tapioca pudding. He tossed some food on the floor when he decided he’d had enough.

We used to track calories, but that was just too much work.

As long as he’s getting bigger and growing taller, we’re in good shape.

I must mention, Laila is up at this time, too. She’s not a morning person. Not even close! She spurns humanity over her bowl of cereal. If I’m lucky, she’ll eat half of it. I coax her into “flat toast.” This is how she orders plain bread with butter, her favorite food on earth, it seems. I have no idea where she came up with this short-order lingo of her own.

Oh, I must also mention, Mark is up at this time, too. He’s also not a morning person. He spurns humanity over his coffee. I force him to take a banana with him to school.

Mark grumps his way out the door, his Chicago Bulls mug full of hot coffee (God help me if I use the last of the half n half).

Laila and I yell “BYE DADDY WE LOVE YOU” at the top of our lungs.

Eli contributes “EH!”

At some point I shove breakfast down my throat. I am usually standing up and I’ll bet you a fiver I’m late for something.

And this is how we start our day.

Eli’s next appointment with the cystic fibrosis clinic is in a week and a half.

At the walk yesterday, I spoke to a Pertzye drug rep, who let us know about a rebate program I wasn’t aware of. The drug company will pay $75 a month toward your grocery bill, so long as you fill out a form and mail in the receipt for your pills. We have to order them by phone to get the pills shipped. $75?! Oh heck ya. ‘Cuz that’s probably our applesauce budget!

In addition, we’re enrolled with a program with that pill’s maker. We get these enzymes for free.

Every little bit helps.

For no reason, here is Laila dancing to Bad Religion. Her favorite music genres so far are punk and Bollywood.

4 thoughts on “Breakfast at Eli’s

  1. Christine Ellison says:

    Loved reading your blog this morning. Not only a testament to your excellent writing skills but also to your loving care for little Buddy.


    1. j&m says:

      Aw, thx!!!!!!!!!:)


  2. Bill Ellison says:

    Julie, great story, love these, especially the videos!


    1. j&m says:

      Thank you!!!!!!!!!!!


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: