This is Eli

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

Good news — we’ve fattened buddy to the 50th percentile.

I despise percentile talk among parents.

I bring it up because, in Eli’s case, it’s directly related to his health. We need to keep him chubby to keep him healthy.

Baby Eli’s cystic fibrosis, tummy and growth

A cystic fibrosis kid will have better lung health and a better shot long-term if his BMI can stay in the 50th percentile and above, Eli’s doctors have told me.

We took him to his regular physician a bit ago and he weighed in above the 50th percentile. But at the time, he had on a wet diaper and clothes.

At the CF clinic more recently, they weighed him in the buff, so the reading was more accurate. He was 20 pounds 11 ounces and 29 inches at his December visit (Lord, or was it late November…I am really behind). His weight/height ratio plunked him right into the 50th for BMI, his nutritionist tells us.

In other good news, he had “regular flora” growing in the back of his throat. Sounds gross, but that’s what we’ve all got back there. This is much preferred to the usual frighteningly-named bacteria that show up. There are a few types of bacteria that, if detected, would require immediate treatment with antibiotics. The most threatening stuff has thus far been kept at bay.

No guts, no glory

What the what …

After sleeping through the night for months, buddy boy has up and changed his schedule on us.

For over a month, he has regularly awakened in the middle of the night, usually with a giant mushy poo diaper to change. During those 3 a.m.-ish wake-up calls, Eli is always hungry. He is always mad.

What’s the big idea, buddy? I thought we were done with that. In those wee hours, we have been giving him a bottle – sometimes two – to satisfy and fatten him and lure him back to buddy boy dreamland.

His poo poo is of concern to me, because it is usually mush. Like oatmeal. Not a stiff Irish Oatmeal, either. I’d call it instant. Every once in a great while he’ll deposit one I’d compare to clay.

You are so welcome for those descriptions.

He poos a lot. At the same time, he eats something like 200 percent more calories than your-run-of-the-mill baby, so maybe he manufactures poo more as well.

#@%@#$#@#$

As a 1 year old baby who poo poos 24/7, Eli has come to a baby conclusion: he hates having his diaper changed. I mean he all-caps HATES it. I’m talkin http://www.donteven&$”@;!?thinkaboutitmommy.com hates it.

Oooooh, it makes him mad. To show us how he feels, Eli has perfected a move Mark and I call “the alligator roll.”

While we’re trying to change him, he stiffens up and starts hollarin. He kicks his chubby legs in rapid angry baby-man style, and then flips himself over. About half the time he’s so fast and furious he kicks his own pile of mushy poo, flingin’ it around. When he puts his mind to it and gives it all he’s got, changing a diaper becomes a two-man job. As it turns out, we’ve reared a hardy buddy boy with strong baby opinions and no qualms about expressing himself.

In the middle of the night, Mark or I have had to desperately call the other for help as Eli flings poo and kicks and rolls around like a maniac baby.

“Maaaaark! Maaaark!” I croak. Do you know how hard it is to rouse my husband from his sleep? “Maaaaaaaaaaaaaark. MARK. MARK. MARK!!!”

Then Laila wakes up.

“MARK. MAAAAAAAAAAAAAAAAAARK!!!!!!!!! HEEEEEEEELP!”

Laila starts crying. For I am scaring her. I start swearing under my breath.

“get up jackass..@#$#$^#$%#$%#@#$@#$@#$@#$#@$@#@$.”

Poo flies. “@#$#@^$%^#%#%$#”

“MAAAAAAAAAAAAAAAAARK!”

@#$#@V #$^$% $%&#$%

And finally, daddy runs into Eli’s room.

“Where have you been?”

“What are you talking about? What’s going on?”

” @#$@#%#%$ jackass @#$$#^$@%$#@$#@ help me with this #@$#$^@# diaper.”

He then dives into the poo with me.

We have a very healthy and productive marriage. Move along, nothing to see here…

But really, Mark and I take turns getting up in the middle of the night. We rotate – one gets the wee-hours and one gets the wake-up.

Eli’s baby alarm has been going off at 5:30 or 6.

Other times while changin’ buddy, we’re successful at distracting him with a book or toy, thus avoiding poo-y alligator roll scenarios.

I e-mailed the clinic about his frequent mush poos and got a few tips back. First of all, we upped his antacid dosage. He had a lot of reflux, possibly because CF kids have more acidic gut systems. The antacid also helps him absorb the little enzyme beads he takes before each meal.

Now that Eli’s sprouted teeth, we need to make sure he doesn’t gnaw his enzymes, which would downgrade the medicine’s potency by releasing the ‘zymes too early in his gut system. He needs his ‘zymes to absorb fat. No fat, no growth for buddy boy.

Enzymes are testy about being too hot or too cold. We’ve taken the lid off to make sure the glass bottle stays at room temperature.

There are a lot of little things to think about with a CF child’s growth and dosage and testy guts.

Eli’s cystic fibrosis and lungs

I’m not sure how his CF will develop as he grows and gets bigger. Will it involve his lungs more as he ages? Will he have primarily tummy troubles? It thus far remains a mystery, though most of his issues have stayed where it all started, his gut.

That blocked bowel could have taken my baby away but it didn’t. Doctors saved him and now he’s healthy and growing.

Eli does the Jane Fonda 'ah hell no'

Eli invokes the 1970 Jane Fonda ‘ah hell no’

In his first year he needed two rounds of antibiotics for colds that flared up chest crud. He doesn’t yet need a nebulizer for breathing treatments.

Just yesterday, though, he began coughing again. Laila has a runny nose and a little cough. Eli caught what she has. We do the best we can with hand washing. No matter how many times a day we wash our hands, Laila and Eli both catch colds. I’m trying not to view illness as a failure on our part. A child has to get sick. Each buddy is on a journey to confront health assaults from the world of tiny ugly germs, battle, win and grow a healthy immune system. It’s part of growing up, chronic illness or not.

Any how, as we’ve done before, we will put Eli on his vest machine for extra time, and pound on his back, to beat the crud out of his lungs before it sticks. Wish us luck!

Nosy, like mama. Cozy, like a Sox cap on a icy day. Such is Eli. Shot on an iPhone 4S with regular camera, then edited VSCO cam app.

Nosy, like mama. Cozy, like a Sox cap on a icy day. Such is Eli. Shot on an iPhone 4S with regular camera, then edited VSCO cam app.

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One thought on “As the poo flies

  1. Taylor says:

    Hello there from the UK. You may remember me im the 19 year old girl with autism and cf with gene therapy. I am still thinking about you every day and praying for your family. Poor guy, his bms must be acidic and he has a diaper rash from hell!!! I experienced this when I was bedbound by my double lung transplant, no fun!! Is Eli on a feeding tube? If not, I hope it stays that way! Prayers to you and your beautiful family

    Like

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