It’s hard to believe, but Eli is 2 years and 7 months old this month.
Mark took him to his latest quarterly visit with the cystic fibrosis clinic. This has been the case for the last few visits due to my work schedule, thus, giving clinic staff a break from the crazy blogger who takes way too many photos and videos of her child at the doctor.
The main aspects of the visit at this stage in his life seem to be: 1. Swab his throat to get an idea what crazy-named bacteria if any are waging war in his air bags and 2. Check and see how he has grown.
Before we get to the results of his visit, here is a run-down on our daily care routine:
He has had an hour of chest physical therapy a day to break up the mucus in his lungs since diagnosed at 2 weeks old. At 3 months, I procured The Vest, a system that automates this work.
As you can imagine, being hooked like a wee oxen to an air compressor goes over really well at 2. I try to sneak up on him with his camo vest, but he spots me, screams and runs away, usually with a mischievous glint in his eye. He hides in all the obvious places tots like to hide, like under the table. Yo, Eli, you’re not invisible. I see your eyes are closed. Still not invisible. Nice try though, buddy.
Seriously though – most of the time it’s OK. He’s 2. He has mood swings for that reason alone, being 2. He likes to hang out with mommy during his vest and play choo choos and Legos.
At 2, he began taking Pulmozyme through a nebulizer like so:
Pulmozyme does this, per the Cystic Fibrosis Foundation:
Pulmozyme, along with other CF therapies, may improve lung function in people with CF. Taking Pulmozyme every day has also been shown to reduce the risk of lung (respiratory) infections.
Pulmozyme acts like “scissors” in the mucus. It cuts up the DNA strands outside the cell that can make CF mucus thick and sticky. This DNA is from the white blood cells that work to fight lung infections. Even if a person with CF has not had a lung infection, the white blood cell DNA is still in the mucus.
Eli flailed about like a maniac when we started him on Pulmozyme. We had to physically restrain him. It stressed us out, but within a few weeks, he smoked the peace pipe and can now sit with his mask on. The strap doesn’t stay in place so we help him out by holding it up or staying near by to make sure he takes the full treatment, like so:
He takes an ADK vitamin mix, an extra dose of vitamin D and an extra dose of vitamin E because CF kids have trouble absorbing nutrients, which can lead to other problems. What problems? DUNNO. Speaking of I need to do the research there.
He also takes enzymes in applesauce before meals. The applesauce just makes sure the enzymes travel to the right part of the gut to help Eli best absorb fat. Without the enzymes he would poop out fat (which smells like roadkill, you’re welcome) and stop growing. An underweight kid with CF can become vulnerable to a menagerie of health assaults or worse, starve. Yes starve.
Uplifting, said no one ever!
Over the winter he took antibiotics — in liquid form, not a nebulizer — every month. I *believe* Eli has not had to take antibiotics since March, which has been nice.
Other than that, it’s summer, and Mark’s a teacher, so he’s home with the kids running the heck out of them. Not just because exercise keeps a little CFers lungs strong, but for our own sanity. These kids gotta go to bed at night.
Mark and I at times look at one another, nod and say “Run ’em.” As in wear. them. out.
Lord it took a while to write that all down. In practice, it’s not overwhelming. All of this care is normal now. It fits into our day.
That’s the state of our care routine at this moment in time.
On to the state of Eli.
We had a good clinic visit!
He does not have a regular cough. When he coughs, it’s because he’s sick.
His throat swab grew normal flora – ie, the bacteria aren’t causing trouble.
He has gained .3 kg, over half a pound, since his last visit.
His weight shows he is at the 43rd percentile, which is a little below where we’d like him to be, which is in the 50th percentile. CF kids do better long-term if they can stay in the 50th and above
His height is the 83rd percentile. He’s taller than he is heavy. Man, but you should see his gut.
He is gaining 3.3 grams a day, which amounts to about .1 ounces. Google tells me one slice of bread weighs 1 ounce. Eli gains 1/10 of a slice of bread in weight a day. Nom nom bread noms.
The nutritionist’s goal is that Eli gains 5 grams per day.
That translates to: More butter. More bread.
I’m not sure what this means for him, calorie-intake-wise, but I will check and see.
He’s grown 13.5 centimeters (about 5 inches) over the last year.
He’s gained 1.9 kg in the last year, or 4.3 pounds. The goal is that he gains 2-3 kg (4.65 to about 7 pounds) per year in his first years.
With this information in hand, we are refocusing on weight gain. I’m trying to add extra calories to nutritious smoothies with stuff like peanut butter and heavy whipping cream.
The other thing — we discovered we weren’t being careful enough with Eli’s enzyme intake.
We plunked it into his applesauce, put the mixture in front of him, handed him a spoon.
We dressed him in his signature full-body bib – it’s an art smock with long sleeves – and left him to his own devices.
Well, his spoon doesn’t always hit target, and globs of applesauce running down his smock contained precious enzymes! He was pooping five or six times a day. We just thought that was normal. That may sound careless, but hey, we’re busy, and sometimes we miss important details, as hard as we try to stay on top of his health and medicines.
Mark took the lead to improve the enzyme delivery method — we spoon feed all of the enzymes in the applesauce, it’s that simple — and Eli is down to two solid, not runny, poos a day. I hope it helps him gain more weight.
You can do it, buddy!
Flashback to the first time he tried applesauce. Oooooh the faces he made oooooh be still my heart!!!!!!!!!
Applesauce face slideshow! Woooo! Yes, it’s true, I took *that* many pictures of him trying applesauce.
That concludes state of the Eli, my son’s quarterly health progress report.
In other news, he told me “I love you, mommy,” for the first time.