This is Eli

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

It’s been a wild few weeks.

In between my insurance co. wranglin for a medicine for Eli, buddy boy got a little cold that went to his chest. He started off with wee coughs ala “I think I got the black lung pop. ack ack”– Zoolander.
Six days later the little cough decided to “Stick around”–Schwarzenegger, Predator.

our buddy boy

our buddy boy

The good news is, all is well now. He started an antibiotic Nov. 15. We’d tried to knock the thing out of him with a lot of extra vest time as soon as he got the sniffles, poor boy, but that didn’t work. The meds did. Two days into his antibiotic, his cough went away before I could even record one for posterity’s sake. As a bonus, unlike the first time he got a cold that flared up his CF bacteria, I didn’t even lose my mind!

I made this Audioboo recording Nov. 15 to make a record of me not losing my mind and attempt to document his elusive hack:

I’m pretty sure I was trying to do a little manual PT after his vest and then just gave up. It was pissing buddy off and he’d already done 1.5 hours of vest!

Indeed, I have discovered every first with this disease presents a unique set of new challenges. A primary one, with every first, is figuring out how to keep a positive state of mind in the face of the new thing that you don’t understand and are therefore terrified of. The first cold was a lot harder on us mentally than the second one. Luckily, this go-round wasn’t severe at all – limited perspective there, but that’s my conclusion. *Knocking on wood*

Now we just need to remember to give him the each dose of the antibiotic for the full 21 days it is prescribed to avoid any funny business. In the mean time, we’re giving him a lot of yogurt and a kiddie Culturelle (probiotic) packet a day so his gut bacteria don’t take too much of a hit. Whew!

Eli has his visit to the CF clinic on Wednesday. I’m curious to see how much he weighs. The reason being, cystic fibrosis kids fare better over time if they have a BMI in the 50ths percentile or above. Eli’s was in the 5th a few months back. His gut is getting outrageous — is it possible to overfeed one of these little CF buddies? Probably not. They need something like 200 percent of a normal calorie intake to keep weight on, due to the different way their bodies absorb fat (ie not that well).

Eli’s calorie goal is 1,050 a day, which we reach pretty easily!

Buddy boy eats all mushy food these days. Thanks to a gift from grandma Chris, we are no longer relying on super expensive organic baby food space packs that are made for the children of millionaires.

She got us a Baby Bullet. I don’t know why it took us so long to figure out we need to make Eli’s food. It’s way way cheaper than what we were doing before and really nutritious.

I liked the expensive space pack thingies because they seemed so very nutritious and also listed calories on the back. We were having our nannies track everything Eli ate to make he hit his calorie goal each day.

Well, we let go of the tracking, and buddy boy is doing just fine. He’s getting nice and tall and heavy.

In the mean time, Mark has become very possessive of the Baby Bullet. He was treating it like a sacred object when we first got it and wouldn’t show me how to use it. Well, I showed him when I took matters into my own hands and ground chicken without the lid on, spraying us both in the face.

To my delight, his odd fondness for Baby Bullet has morphed him into a baby food chef. Sure, I’ll grind up the food we’ve made for dinner for lil man, but Mark has taken things to the next level. Let’s just say Eli has Greek yogurt blended with with organic kale and organic pear the fridge.

Sometimes I look at him while he’s making Eli’s food like: Who. Are. You?

We both care a lot about making sure Eli – and teeny Lailai for that matter — get the right kinds of foods in their bodies.

I’m excited to see if our efforts to fatten buddy have paid dividends in pounds and ounces of baby fat.

In the mean time, we have work to do for a nutrition study Eli signed up for. We’ve got to track everything he eats for the next three days. Also, all his poos and pees. Also, his baby mood swings. Also, we have to give a poo and pee sample on clinic day.

And switching gears, for there is no good transition here, I am cooking a turkey this week.

Lord help us all.


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