This is Eli

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

Yesterday I found out that my little buddy is actually more like a big buddy.

big buddy in the elevator

big buddy in the elevator

Tipping the scales at 28.8 pounds at the OKC cystic fibrosis clinic put him in the 90th percentile. That’s a big bump for him!

No, he didn’t break the scale, or the Internet. He just made his mommy proud.

Big burly Okie baby

Big burly Okie baby wearing one sock

The idea is, a CFer with heft along the lines of the 50th percentile and above will better ward off infection. Anyhow, I’m just thankful he continues to put on weight despite multiple big ‘ol poos per day, as in three to five. You are welcome. At least we can avoid getting a G-tube for extra nutrition for the time being!

The other big news is that we will be starting a new treatment called Pulmozyme shortly. It is Eli’s first inhanler. It’s not an antibiotic, but an inhaled treatment designed to keep the mucus in his lungs and sinuses thin and loose, cuz it’s thick and sticky on account of his genetic disease. The treatment will take five minutes per day, which isn’t so bad. We’re reading a book to him each night about his new treatment and letting him play with the mask he’ll need to wear.

Almost there, big guy!

We’ll give it the ‘ol college try over the weekend.

We got through the basics at the clinic with no issue. No pulse-ox blowout like last time.

However, exactly like last time, he only had one sock on.

Last time:

One sock, Aug. 2014

One sock, Aug. 2014

Also exactly like last time, he refused to wear a mask:

Here is is ignoring the mask in front of him

Here is is ignoring the mask in front of him

Nope:

nope

nope

Sort of (?) (ha)

Almost.

Almost.

Eli tot-clamped his mouth shut, but eventually, he let the nurse take his quarterly throat swab. In a few days we’ll know what, if any, alarmingly-named bacteria are growing in his lungs these days.

Eli demos the tot-clamp

Eli demos the tot-clamp

Next, mommy pulled a ‘scary mommy’ maneuver. Eli was supposed to go down to the lab to get a blood draw. That’s when I piped up about our past bad experiences at the lab. During one visit for a blood draw for a first-year study, Eli sat in his diaper and no clothes for 45 minutes with Mark while the staff worked out the billing. After an hour, the phlebotomist about to do the draw told Mark she was nervous to do the draw. And that’s when Mark walked out of the lab with our diaper-clad little buddy.

Since then, another worker at the lab on a different occasion told us he/she was uncomfortable doing the draw on Eli.And again, we walked out.

Wait wait wait wait wait holdup.

We’re at a children’s hospital, right? The only one in Oklahoma, right?

OKOKOKOKOKOK I just had to check and make sure.

We guessed that these scenarios pointed to issues in the blood draw lab, things like high turnover or lack of staff experience or staffing generally. My hope is that the hospital would address and improve upon any of these problems with, for instance, wage bumps, additional training, etc. Maybe it has.

I don’t know, and I wasn’t about to find out, because my son isn’t anyone’s pin cushion.

Anyway, I delivered these past experiences to the CF clinic staff and refused to go back to the lab and begged them to do his yearly draw there.

And that is what they did.

The clinic staff is warm and caring. Facing the wrath of a writhing tot, they surrounded him and cooed sweet nothings.

Can we break from this narrative momentarily?

One of my pet peeves is when people say their child was “flirting with…” so and so. Like, “Ohhh…she’s flirting with Daddy.”

Ew. Incest-y and ew.

It’s weird and it sexualizes children.

Returning to narrative now.

Eli was flirting with the nurses.

OK, there is no other way to put it!!! So sue me.

He was just tickled at all that attention.

Look at him!

Goochie goochie goo! They were so sweet to him. It was heartwarming.

Little did he know he had been lulled into a trap.

Wait, mommy! This has been a traaaaaaap!

Wait, mommy! This has been a traaaaaaap!

Sorry, buddy.

You’re breakin’ my heart, buddy.

He also got a chest X-ray.

That was just no fun for him, as he was stuck in a plastic tube like Augustus Gloop.

But the radiologist was lovely! Really good with me and buddy!

Eli, you’re breakin’ mommy’s heart again!

sweet Eli it'll be over fast

sweet Eli it’ll be over fast

We cuddled it out.

I forgot to mention!

Big buddy is almost 2! It’s so hard to believe!

Here is a selection of Eli shots, most from hospital and doctor’s office visits. Maybe it’s silly, but I view his quarterly visits kind of like childhood mile-markers. It’s a good time to reflect on how far he’s come and all the good times we have had in between each visit. The pics in the slideshow include his time as a teeny fighter through surgeries to fix a blocked bowel, a complication some newborns with CF experience. Then there are various doctor and cf clinic visit shots, and some of us havin’ grand ol times outside the hospital. I have a growing sub-genre of ‘mask refusal’ portraits. One of these days, Eli, one of these days, mommy’ll get one on ya. My, I’m wordy.

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