This is Eli

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

Good Wednesday morning.

Mark and I stayed up late talking about, what else, this week’s news: the National Security Agency and the Snowden leak. Paha. Like I’m going to talk about that here! I read aloud this article last night. Yes, this is how we entertain ourselves.

My mother-in-law, Chris, brought me this typewriter as a gift...just in time.

My mother-in-law, Chris, brought me this typewriter as a gift…just in time.

I’m up early, because my baby was! Eli doesn’t care that mommy and daddy want to stay up talking crazy talk about government surveillance programs until 1 in the morning. He wanted to eat and play at 5 a.m.

Buddy went back to sleep. I got Mark to get up and get Eli’s little enzyme and applesauce, though I’m pretty sure Mark did this while sleep walking. I’m still up. Wait a minute, something doesn’t feel fair here…

Fiddlee dee, time to start sucking down my daily pot of coffee.

And on to my buddy’s tummy. If you want to read the history of Eli’s tum, here is the category…read from the bottom up to read in order.

Mark took Eli to the CF clinic last week.

He weighs 15.4 pounds. Pretty good, little fella.

He gained 1.5 pounds since his last visit.

Buddy is only in the 5th percentile for weight, but he’s in something like the 70th for height.

He is so much bigger than Laila was, so I’m surprised he’s on the small side.

Eli fits into this little 6-12 month suit now, as a 6 month old, that Laila fit into at 1 year old.

Teeny people friends, Eli & Laila

Teeny people friends, Eli & Laila


Laila could give a hoot about food as a baby. We still have a lot of trouble getting her to eat. I had to use her new little friend as leverage the other day to get her to take a few bites of her (delicious, fattening) grilled cheese-avocado sandwich.

“Do you want to see Holland at the park? You have to eat you sandwich. No? OK, we will stay home. No park. No Holland.”

*Begrudgingly takes microscopic bite*

Repeat that scene about 20 times…I give you…lunch with Laila at my house!

Luckily I do not have the same problem with Eli. Buddy loves his No. 1 food source (me!) as well as all the fruits and veggies he’s tried so far – though I admit I started with the better-tasting vegetables like squash, corn and peas.

This is all good because children with CF who grow normally are likely to have better lung function, my hand out from the CF clinic tells me.

It continues:

“Finding and fixing growth problems help keep your lungs healthy longer.”

Speaking of keeping lungs healthy, for the second time in a row at his clinic, Eli saw a physician’s assistant, instead of a lung doctor.

I’m going to call them about this.

I want him to see the lung doctor, not a PA. We don’t take Eli to a specialist and pay a $40 co-pay to see a PA.

So far, any time I’ve had a concern, the clinic has been really receptive.

I started learning this while Eli was still in the NICU: It is so important to speak up any time something feels off. Sometimes speaking up is just that — speaking. Other times you have to shout. Go above heads. Get grumpy and ornery and mean. Hey, no apologies, it’s for a good cause — your kid’s life.

Eli doesn’t have a voice that can make words. He’ll be good at making words one day – complete with gestures to punctuate his well-reasoned points, I’m sure! Until then, it’s up to mom & pops to be his voice.

My little sister works in healthcare and she made a good point early on: “Remember, we are working for you.” And here in ‘merica, bad customer service is an affront to what we deserve (or at least think we do): the best.

"Can I help you?" "Yeah, I want the best." "And you are...." "I'm 'merican, that's who!"

“Can I help you?”
“Yeah, I want the best.”
“And you are….”
“I’m ‘merican, that’s who!”

I’m not saying I got bad customer service, per se, just that I am going to raise this concern-slash-demand my child see a lung doctor.

In the mean time, Mark and I will take Eli back to his gut specialist.

He was having some problems the last time I wrote – throwing up and such after meals.

This alarmed us a lot since he had to have two major gut surgeries right after birth. We panicked.

Then we worked with the gut specialist and the staff at the CF clinic at Children’s, and then with each other, to solve this issue.

Mark and I put his nutrition plan on a white board in our kitchen and additionally made a check list on a separate dry erase board for all to see. This is working for us and Eli is better for it.

The antacid is important. It keeps him comfortable – people with CF can have acidic gut systems. The antacid also helps him absorbs his enzymes. He takes enzymes made from pig pancreas because his CF wrecked his own pancreas while he was in development. If he had pancreatic function when he was born, it’s pretty much done at 6 months, his doctor told me when he was diagnosed.

The pancreas makes the enzymes that help you or I absorb food. Eli’s doesn’t. So he takes enzymes before he eats anything – even the tiniest bite. He would otherwise poo out fat and nutrients. He would starve to death if he did not take enzymes.

This is why Mark and I start to panic when something goes wrong with his little guts. He has a lot at stake.

As it turns out, his tummy’s fine: we were stuffing poor buddy in an effort to fatten him and forgetting to give him his antacid like a couple of dum dums.

We give him the antacid, burp him more frequently and have him sleep a little bit elevated in his bed.

He has stopped throwing up.

Eli’s very nice dietitian, Danielle, says we still should feed lil man every 3-4 hours. Three times a day he gets some combination of cereal and/or fruit/veggie baby food, too.

She also had us up his salt intake.

Have I mentioned that before?

We were giving Eli 1/8 tsp of salt a day in his bottle. That’s been upped to 1/4 tsp.

CF people lose salt – a lot of salt – through sweat.

It’s been hot in Oklahoma this week.

We’ve got our air on, but Mark is going slowly mad is trying to to lower our energy bills. He signed up for a program with the electric company that texts him thermostat advice at the times the company charges peak rates.

So between 2 and 7 p.m., our thermostat is set to 80 degrees. It’s muggy but I’m willing to tolerate it to not have a $400 electric bill this month.

My point is, we sweat at our house.

The other day, Mark was holding Eli, and he said to me: “Taste his skin.”

I licked my kid’s head.

Buddy was like the saltiest potato chip I’d ever tasted!

I licked Laila’s face for comparison.

Much less salty.

Yes, this is how we in CF families roll.

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3 thoughts on “My buddy and his tummy, 4: Guts under government surveillance

  1. scaz2010 says:

    HA! This was great! I eat a lot! I also intake as much salt as possible, but I don’t really care for it.

    On a side note-I would rather see my PA than the lung doc. My PA knows more about me than any of the lung doctors I have seen. She signs my scripts and answers my texts when I need her! Amazing! Also, if you keep writing and advocating maybe we will have better communication with our CF clinics as we grow older.

    Like

    1. j&m says:

      Hi, thanks for the feed back. I’m not sure why I’m so bothered by seeing a PA…I just am. I’ll talk it out with them, though. I think communication is key!

      Like

      1. scaz2010 says:

        Totally agree. As long as they are listening and clear communication lines are open, that’s what matters. My doc as a teen on the East coast was by far the best. I still keep in touch with him now.

        Like

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