I get a little irked sometimes when I hear people complain about things that pale in comparison to what others are going through. Of course, as humans, we are all going to complain, or at least want to complain, about things that are going on in our lives. I try not to complain if I can help it because what I go through, no matter how serious, I know there are people going through worse, who have more stressful things to deal with on a daily basis.
That said, I thought I would share what a typical day for us looks like. I will say right now that I know there are people whose days are way more complicated/busy/stressful/[insert adjective here], but for many people I know, their days are not as crazy as they might think once you get a glimpse of the "craziness" that ensues here. I am not posting this for attention on my part, only to allow others to see life in my shoes and therefore better appreciate their own and not complain so much about the little things that don't really matter.
Around 6:30 am: After being up every couple of hours (or sometimes every hour) with an infant whose nursing schedule hasn't changed since birth, Cohen crawls into my bed and taps me on the face until I wake up, greeting me with, "Mom, I need bruck-fist." Usually, he wakes his brother up in the process since Kyden still rooms with us and will until he decides that sleeping through the night is a widely accepted practice. If Kyden is due to nurse, I will nurse him in bed before getting up to start our morning, much to Cohen's dissatisfaction, who is hungry first thing in the morning. (I'm the same way, so I can't blame him.)
Around 7 am: The boys and I go the kitchen, where I get enzymes ready for Cohen and Emberlynn. I usually hear Emberlynn around this time, who calls for me because she is attached to a feeding tube and pole, and it's a pain in the rear to haul that thing around unless you really have to. There is almost always an urgency in her voice because she usually needs to pee after having 24 ounces of high-calorie formula pumped into her stomach all night long. I unhook her so she can go potty. While she takes care of business, I give Cohen his enzymes and breakfast, which begins with a whole-milk yogurt (Yobaby is a food group around here), in which I mix his nasty liquid vitamins and probiotic powder, which he totally doesn't even realize. As he eats (well, inhales, really) his yogurt, Emberlynn is usually done, and I flush the extension that goes into her mic-key button, put her liquid vitamins through it, and flush it again, then remove her extension. She takes her enzymes (she has to take them before and after tube feedings), but she rarely eats a breakfast because she is so full from the formula.
Emberlynn and Cohen usually play, or Emberlynn works on school work while Cohen plays, while I get started on whatever chores need to be done (laundry, dishes, vacuuming, etc.) and tend to Kyden, who eats breakfast at different times depending on when he nurses. I also wash and sterilize Emberlynn and Cohen's nebulizers, which must be done every day at least once per day. If it's a "TOBI month" (Emberlynn is on an inhaled antibiotic every other month for 28 days), I wash nebs twice a day because she has it in the morning and at night.
9:30 am: After having Emberlynn and Cohen clean up any messes they have made, they have a morning snack, but not before taking their required enzymes. Kyden usually lays down for a nap at this time, which allows me to get Emberlynn and Cohen's Vest machines out and hooked up.
10:00 am: The kids wash up from snack and get on their Vests for therapy time (these machines help break up the sticky mucus in their lungs), which is thirty minutes. They usually watch a DVD or a show on Disney or Nick, Jr., but sometimes they choose to play their Mobigos or look at books. We pause their Vests at ten-minute intervals so they can cough and try to get any "yuckies" up. Once Vest therapy is done, they have to do breathing treatments. They each get Pulmozyme, which helps thin out the mucus so they can cough it up more easily. This takes about ten to fifteen minutes to administer. If Emberlynn is on TOBI at the time, she gets it after her Pulmozyme breathing treatment is done. The TOBI takes about thirty minutes.
Kyden wakes up from his nap anywhere from 30 minutes to a couple of hours after he lays down, and he nurses at some point depending on the last time. Now that he is mobile, he loves to crawl to the machines and grab the cords and hoses, so there is a lot of the "Mommy moving Kyden away from the Vest machines" game.
12:00 pm: This is usually when we have lunch. My kids don't choose normal things, like PB&J, but rather, they have a very short list of foods they will eat. For Emberlynn, it's turkey bacon, ham, or "butter noodles", which is spaghetti with butter and "sprinkle cheese" (or leftover ravioli, if we have it, which is not often). She is the world's slowest eater, and most days it literally takes her an hour or longer to eat a very small amount of anything at lunch time. She might also eat a banana yogurt (another Yobaby flavor) or a banana itself, or leftover corn. Cohen usually chooses chicken nuggets, a staple for most any preschooler. I would love to at least buy the organic ones, but our budget doesn't allow for that (it would cost me about $6 for a box of chicken nuggets that would last about three or four days. That's $60 a month or so just for chicken nuggets. Um, no.) I have tried making homemade ones and freezing them, but I guess they just don't have that wonderful processed flavor kids adore. Lately, he has wanted fries also, which are organic, and I cook them in a pan in coconut oil (a great source of good fat and other benefits for the kids, like anti-inflammatory and antibiotic properties) and add salt (another must for CF-ers). He then has another yogurt. Both kids get "treats" if they eat good lunches (Emberlynn likes things like chocolate pudding and Hershey kisses; Cohen chooses goodies like Goldfish or WhoNu cookies, which are our Oreo wannabes).
I feed Kyden his lunch between 12 and 1. And somewhere in there, I make lunch for myself, too, which is usually something easy and quick like a salad or tuna with yogurt.
If there is time after lunch, the kids get a little more play time, or we go outside if the weather is nice.
1:00 pm: Following lunch, it's nap time for Cohen and sometimes Kyden if he is ready for his second nap (otherwise he goes down a little later). Cohen and I read a book together before he lays down. This is usually Emberlynn's main school time, although lately she has needed rest time (when she is whiny and grouchy), so it depends on her needs for the day.
During this time, Emberlynn and I are doing school, and if Kyden is sleeping along with Cohen, I try to get more housework done and make any important phone calls with as little interruption as possible.
Around 3 or 3:30 pm: Cohen usually gets up from nap, and Emberlynn is either finishing up school work or getting up from her rest time. They both have an afternoon snack (but not before taking enzymes for the fourth time today).
Matt usually gets home around 3:30 if he works a normal 8-hour day, so I am able to get more stuff done around the house and occasionally get in some kind of workout, though most days my motivation for doing that is pretty much nonexistent.
Around 5 pm: I usually start dinner unless it's something that takes longer to prepare, in which case I would start it earlier than five. With Matt home, I can usually get dinner done pretty easily. Sometimes Matt gets the kids started on Vests for their evening treatments, otherwise that's an after-dinner thing.
Around 5:30 or 6 pm: We eat dinner, which usually consists of trying to get Emberlynn and Cohen to eat enough of their dinner. As picky as they are, there are very few things they eat well. I make things high-calorie for them (adding butter or oil to things like veggies and pasta), and I also add salt to their food like usual. Foods that are high in calories on their own (like pizza, casseroles, etc.) are foods that the don't eat well. Go figure. It's an everyday battle and an everyday worry.
Around 6:30 pm: If the kids need baths (they get one every other day), they start them after dinner. Matt usually bathes Cohen while I clean up the dining room and kitchen, then I bathe Emberlynn when Cohen is done. Kyden gets a bath later or in the morning.
7:00 pm: We usually aim to start nightly treatments around this time, and a little earlier if it's a TOBI month. The kids do their Vest therapy again. Once that's done, they start getting ready for bed. They get medications (each of them gets a Prevacid tablet, and Cohen also gets Claritin). Either Matt or myself gets Emberlynn's feeding tube ready, which requires setting up a bag on the feeding machine, pouring in the containers of formula, priming it, and getting other things we need together in order to get Emberlynn on her tube once she's in bed (a giant syringe, water, her extension, etc.). Emberlynn also gets enzymes before bed since she is on a feeding tube.
8:00-8:30 pm: Emberlynn and Cohen both go potty, get their teeth brushed, and we read either from the Bible or read a book before getting tucked in. Sometimes I am nursing Kyden and Matt gets them down, which also requires hooking Emberlynn up to her feeding tube; otherwise, Matt usually tucks Cohen in, and I take care of Emberlynn.
8:30-9:00 pm: This is about the time Kyden goes down; although, as I have already mentioned, he does not sleep for long stretches. He usually stirs and wakes when Matt and I go to bed, and he doesn't always go back to sleep easily.
9:00-10:00 pm: Matt and I have a little while to ourselves, during which we might catch up on a favorite show (thank goodness for DVR), play around on the computer for a little bit, do our daily couple's devotional, etc. We try to go to bed by ten since Matt gets up at 4:15 for work, and I am up constantly through the night with Kyden.
This is a typical day when I don't have anywhere to be, like an appointment or going grocery shopping or taking Emberlynn to a gymnastics class or whatever may come up. It's life, right? On those days, we adjust as needed to make it all work. It can be crazy, but it's our normal, and we really don't know any other life. Just don't take yours for granted.
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