Some of the little things that I always keep in mind or that might be helpful to somebody out there, raising a CF baby:
At almost 2 years old, I try to aim for 1,100 calories a day. I can promise you, that we almost never make it, but it gets us close by aiming for it. There are tons of resources online for what your toddler’s caloric needs are, specific health needs or not. In our case, at around 24lbs, 1100 seems to be the magic number. Lyla had a cold over Christmas time, as kids tend to get, and while her lungs stayed in good shape (hallelujah!!), she was sleeping a ton, and essentially sleeping though a mealtime. The timing of this, and the effect on her weight, was reflected as either losing weight/or not gaining between clinic appointments. Therefore, January and February were basically spent getting her weight back on track. Somehow, we were successful. What a good feeling. There was no trick to it, just feeding her often and feeding her rich foods. If I find something that she likes, I go with it. Lyla isn’t the healthiest eater, and I’m totally fine with that. Toddlers can be picky. We're all happier when we just surrender to that fact. And no, my toddler doesn’t really like advocado, so don’t bother suggesting it. Can you tell how much I love unsolicited advice? ...as I write a post veiled as “tips and tricks”...this is called hypocrisy irony.
Pediasure is our best friend around here. Lyla has a RX for the 1.5 ready-to-use cans, which are 350 calories/serving (8 oz). She'll drink between 2-3 of those per day. You'll notice that I mentioned her prescription. If you have a child with specific dietary needs, ask your resources what your options are. I love pediasure for so many reasons, but especially the protein, vitamins and minerals, and the iron; I also appreciate the fact that it makes counting her calories so easy. We're also big on peanut butter around here. Lyla loves it on waffles, and sometimes just big scoop on a spoon.
Lyla's pancreas doesn't process fats or protein without the help of her enzymes, but she can eat certain things without them. When we need a quick snack, pretzels and fruit are great, along with white grape juice. I prefer her not to have juice, but white grape has a lot of calories, so she gets it, and she loves it. It just means that I try to be more diligent about keeping her teeth brushed. Back to the enzymes, I have found that anything with less than 1.5 grams of fat, can be processed without enzymes, and therefore without problems. This is what works for us. Every CF patient is unique. However, at her age, being Delta F508, and seeming to have more digestive issues than respiratory (again hallelujah!!), this is what works for my girl.
This is something that I've mentioned a ton via social media, but if you're new here, we live for our vibrating vest. Literally live for it. It has kept Lyla incredibly healthy. We happen to see a pediatric pulmonologist who really advocates for getting a vest on your CF baby as early as possible, which is rare. Typically, a vest will be introduced around 2-3 years old. We started at 7 months, and have rarely missed a treatment. I've never been so disciplined in my life, truly. Now, does Lyla love to sit still twice a day to do her vest therapy? No, not really. She does know her routine though, which is another benefit of having started this so early. She doesn't know any other way. I cannot even imagine trying to get her used to this now, at her age. She runs from me when I try to comb her hair. If you're curious about what it's specifically for, I usually explain her vest therapy like this: Lyla's body processes sodium differently than say I might, and it results in the mucous in her body being somewhat "dehydrated" therefore leaving it thick and sticky. That thick and sticky mucous can settle easily in the lungs, and not want to come out. This is how infections start, and this is what essentially makes Cystic Fibrosis fatal, in some cases. So, the vest keeps that mucous lose. Simple as that. That's not a technical description of how CF works, but it's how I think of it. As for her pancreas, a gateway is closed off, and I still don't understand anything after that, even though my husband has explained it a billion times. I do know that it's basically the opposite "side" of what can cause diabetes.* All I know, is that she needs to eat. A lot.
*that said, diabetes can become a concern for CF patients, along with liver problems. My head just exploded everywhere, while I was thinking about how that can also happen. Like, just brains and tears everywhere. The good news is that nowadays, these wonderful doctors and clinics know that this can happen, and do a lot to make sure that it doesn't.
Whew.
Ok, so one more thing, because I would love to get a shower before Miss Thang gets up... don't let this scare you, don't let this make you think that I'm exhausted or overwhelmed 24/7, and please don't feel sorry for Lyla. We all lead a beautiful life because of her, and it's an incredible time in science, if you have something like CF. We have lots of hope for Lyla, and will make sure that she has it in herself. This is just our little reality here, and if it gives someone out there comfort or answers, that's all that I could ask for.
Thanks for reading, Luci (and Lyla XO)
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