April Clinic and the Kiddos

First, I want to say how much I appreciate everyone's prayers and concerns for Cohen (and for all three kids, for that matter) as we approached his and Emberlynn's recent clinic visit, which was last Thursday.  Matt requested the day off when I made the appointment so that if the decision on the feeding tube surgery needed to be made, he would already be there with me.  My sister Shauna graciously watched Kyden for us (a big thanks to her!) since he is now walking and would have had to be cooped up in a small exam room for two and a half hours, not to mention it gave Matt and me a chance to be able to focus just on Emberlynn and Cohen and talk to the nurses and doctors with minimal interruption. 

In short, the biggest issue for Emberlynn and Cohen is and always has been their weights, or more specifically, their BMIs.  They are supposed to be at or above the 50th percentile for BMI; poor weight gain and maitenance can be detrimental to their health because it affects lung function.  For Emberlynn, the feeding tube helps tremendously by giving her extra calories via overnight feeds.  We are not strangers to this, given that Emberlynn has had her g-tube for nearly five years now.

Cohen, as he has grown taller and gotten more active, has had trouble maintaining an "acceptable" BMI.  He is not unhealthy or undernourished, and I have seen far skinnier kids, but those kids don't have CF, so it's not so much a concern for them.  We have spent the last couple of months trying our best to "fluff" Cohen up (a term my friend Emily uses, which I kinda love) with extra calories in his meals and snacks plus supplementing with Pediasure and Boost Kids.  I have weighed him every week, sometimes several times a week, especially during the last couple of weeks leading up to this last visit.  He had put on two pounds, which was our goal, and then a week before the appointment, he got a virus (which Emberlynn and Kyden also picked up shortly thereafter).  Go figure that the virus lasted a week and completely wiped out his appetite.  He barely ate or drank, which caused him to drop over a pound.  Once weighed at the clinic, it showed he had gained about a pound since his previous visit, which was not stellar but a step in the right direction, at least.  It bumped him from the 33rd to the 41st percentile, which isn't too shabby, in my opinion.  If he hadn't gotten sick, he would have been back above the 50th percentile.  (The doctor actually asked me if Cohen could be faking sick since Emberlynn was also sick, but I told him Cohen was the one who was sick first, and no, he wasn't faking it.  And as  his parents, I think we would know.  Sheesh.)  Most importantly, we were able to "shelve" the feeding tube conversation for now. 

As for Emberlynn, she lost a little bit of weight, but she also had the same virus as Cohen, causing her to have no appetite whatsoever (her appetite is not that great to begin with).  We couldn't even use the feeding tube to help make up for everything because it was making her throw up.  So now that she is over the funk, we are playing "catch-up" by putting her on her feeding tube six nights a week as opposed to five nights (per her dietician's instructions), which is what we have been doing for some time now.

Emberlynn and Cohen will have another clinic visit in two months instead of the normal three months to make sure their weight gain is good.  As long as we can avoid another hiccup (like a week-long virus), I am optimistic they will receive good reports.

And now we come to Ky-Ky, who is growing up way too fast (you'd think I'd be used to that, right?).  Yesterday, as I was browsing the dollar store, I found monkey-themed birthday party stuff, so I bought it for him seeing as his birthday is one month away.  One month away!  I mean, seriously, wasn't he just in my belly?  Now he is walking(and running) and talking (he says "Dad", "Daddy", and "Hi")  and eating whole bananas (since he refuses to eat it if I cut it into small pieces), among other "big boy" things.  (But I sure would love if he learned this "big boy" thing called sleeping through the night.  That would  be awesome.)  He is also still nursing, which is fine for now,  but once he turns a year old, I'm afraid he won't be too keen on stopping.  He loves the boobies, what can I say?  But I suppose we will cross that bridge when we come to it, as they say.

School, Soccer, and Such

So, as always, I have to start by talking about my kids, right? After all, they are my world.

Emberlynn has a mere twenty-nine days of school left (not counting weekends, of course), and then we get to take a little break for Summer before starting back up in July. She is already halfway through first grade curriculum, so sometime during the next school year, she will start on second grade material. This is one of the perks of homeschooling: the kids can get exactly what they need. If she was in kindergarten at school, she would be SO BORED, and I can only imagine how she'd be filling her time (getting up and down, socializing...in other words, getting into trouble). Despite the ups and downs and the emotional war I've had with homeschooling at times, I am extremely glad we chose this path. Being able to experience when my child learns something new and is intrigued by new information, not to mention learn how to read and read fluently, has been one of the most rewarding experiences of my life. Being the one to teach her all these new things is pretty awesome. My little gymnast will also be taking a break from gymnastics this Summer. She has expressed interest in soccer, and I believe they offer in locally in the Fall, so we may go that route for a little while.

Speaking of soccer, we have ourselves a little soccer superstar in the house by the name of Cohen. He started playing in March for the Spring season, and I'll admit, it didn't look promising at first. At his first couple of practices, he didn't want to do much of anything besides stand on the field or stand with me. His first game was awful; he cried pretty much the entire time, so getting on the field even just to run around with his other teammates was out of the question. (Two other kids were crying that day, so that made me feel a little better about the situation). I mean, after all, these are three and four-year-old kids we are talking about, most of which have never played any kind of organized sport.

A few days after his first game was his next practice, during which Matt was able to get on the field with Cohen for encouragement. This practice went extremely well, so we were hopeful that he would at least get on the field and not cry at his next game. We explained that during the game, Daddy wouldn't be allowed on the field, and Cohen understood. So at the second game a few days later, not only did Cohen cooperate and play, he scored FOUR goals! The first of the season for his team! We were BEYOND proud and thrilled. And it gave him just the confidence he needed because ever since, he has been Mr. Soccer Extraordinaire! At yesterday's game, even though he was tired and has been fighting a pretty nasty cold, he played almost the whole time and scored the first goal.

Mainly, I am just glad to have Cohen involved in something that is a good form of exercise (and good for his lungs) and gives him a chance to be social with other kids and learn cooperation and teamwork. Scoring goals is a great bonus, of course, and I'd be lying if I said I wasn't super proud of him.

And last, I certainly would not go without talking about my sweet Ky-Ky, who turned ten months old on April 9. I can not believe his first birthday is right around the corner. He has grown way too fast. For the last few weeks, he has been standing up from the floor all on his own and standing for long periods of time and also taking steps. And over the last few days alone, he has been trying to walk a lot more. I don't think it will be very long before he is officially walking; I am guessing it will be by the end of the month, if that long. He just looks so cute and little standing there because he is on the smaller side and just looks too little to be walking! But there's definitely no slowing that boy down! (*And in the midst of typing this blog, Kyden walked halfway across the room.)

Now that I am (temporarily) done talking about my kiddos, I wanted to talk about my new adventure on which I currently embarked. I became a Thirty-One consultant. Not familiar with Thirty-One? You can go here to learn more about it. It is a direct sales company (like Avon, Mary Kay, Pampered Chef, etc...you get the idea), and it is Christian-based, which was a big selling factor for me. (The name of the company comes from Proverbs 31.) I have never been the biggest fan of direct sales; I like to attend the parties, but a lot of times, I feel pressured to buy products I know I won't use. Then I fell in love with Thirty-One's stuff because it's all about storage and organization, which is right up my alley, but their stuff is also super cute and functional. Once I realized I pretty much wanted to buy everything in the catalog, I thought to myself, "As excited as I am about this stuff, I could probably sell it." I didn't become a consultant to make money, however. Sure, that part is a nice bonus, but my reason for becoming a consultant is to have a hobby for myself and an outlet that will give me a break from the everyday craziness. I get to hang out with other women and have adult conversation and just be me for a little while. So while my excitement and literal joy over this endeavor may seem silly or pointless and even annoying to others, the fact that I have a new found confidence and purpose makes it worth it to me.

That said, I have to add a request: If any of my readers (all, what is it, 11 of you? lol) would like to host a party, please let me know, and I would really, genuinely enjoy doing a party for you. I started out just hosting because it earned me free and discounted products, so it's an easy way to get some of their awesome stuff!

There she goes, talking about her kids again...

A few unrelated updates about my kiddos...

Since we have to essentially "make" Cohen gain two pounds by the end of next month, I have been weighing him at the beginning of each week to keep tabs on it. From last Sunday to today, he has put on half of a pound. If he keeps that up, we should get to the two pounds (and maybe more) with no problem. We've been pumping this kid full of Pediasure to supplement his already decent appetite for food.

Speaking of good appetites, Kyden is pretty much over baby food completely. He still eats a little here and there, but he is preferring table food (who wouldn't, right?). This has made meals for him a little more challenging since he is limited to the kinds of food he can eat at this point. He's been eating a lot of steamed peas and carrots lately along with bananas, all of which he loves. Today, I gave him tiny bits of chicken at lunch (he ate every bite), steamed peas and carrots (inhaled), and steamed apples with cinnamon (inhaled even faster). Tonight, I am going to let him try some of the creamy potato soup (think very creamy mashed potatoes, but it also has pureed squash and cauliflower in it). Along with the nursing, it would seem he is getting adequate nutrition, but his nine-month check-up on Friday showed him to be on the smaller side for his weight (about 25th percentile) but otherwise healthy. The doctor is not concerned, citing that it is probably genetics (which I can't argue with, since Matt was a very small baby and child, and all my babies have been small so far). I'm sure if Kyden was formula-fed and drank juice instead of water in his sippy cup, he probably would be a little bigger given all those extra calories. Anyway, I'm sure he will catch up as he eats more table foods and once he switches from breast milk to whole milk after his first birthday, but the irony is that I thought he would be the only one of my three children with whom I wouldn't have to worry about calories and growth, and here I am somewhat worrying about it, even though the doctor assured me I shouldn't.

The doctor also diagnosed Kyden with eczema, which confirmed my suspicions about the skin issues he has been having. Fortunately, I have been doing almost everything the doctor suggested to keep the symptoms to a minimum (special lotion, hypoallergenic products, and applying Aquaphor on when it flares up), but she also said to keep his baths spread out to about every three days. I have been bathing him about every other day, mostly just out of routine, but it's an easy adjustment to make.

All this talk of food is making me hungry, so onto another topic. Cohen has his first soccer practice this evening, and since soccer is pretty much all he has talked about the last month, he is completely stoked that he finally gets to go tonight. I'm looking forward to seeing how he does as far as learning how to be part of a team, following directions, taking turns, and so on. It will also be good for him to have the social interaction with other kids his age and not just with his sister and baby brother. Mostly, I just want him to have fun and be a kid.

Since I have talked about my boys, I must talk about my daughter so she won't feel left out, right? She is doing very well with her school work and is reading everything. (Gone are the days when Matt and I could spell stuff to each other if we didn't want the kids to know what we were talking about.) I must say, I think she's a born reader. Not only is she good at it, but she enjoys it, too. Phonics, schmonics. She pretty much blows it out of the water. I'm very proud of my Emmylou. She is sort of a fidget when it comes to sitting still, but she does remarkably well with her lessons, so I know she's still paying attention.

Speaking of school, time to end this blog and get some lessons going.

When CF Makes Me Angry...Really, Really Angry...

Before I get to the major matter, here are some pictures from Thursday's CF Clinic visit:

Emberlynn doing PFTs (which measures lung function)

Cohen in his mask (to not spread funk or have funk spread to him)

Emberlynn in the funk-protecting mask

I believe the most defeating thing about CF, and about many diseases and illnesses, for that matter, is that you can do all you possibly can so that it does as little harm as possible, but it's still not enough.

Over the last year or so, we have struggled with Cohen gaining enough weight. And it's not so much that he hasn't gained weight--he has--but along with that, he has grown taller, and his weight isn't catching up to his height, i.e., his BMI keeps dropping too low on the chart. I'll be the first to admit he's a skinny kid, but he by no means looks undernourished. He's an active four-year-old, which is normal and healthy, but with that comes the natural burning of calories, calories he so desperately needs. (On a side note, in my dream world, it would be awesome for me to consume those calories and transfer them to my children considering they need them and I, obviously, do not...but that's another issue all together...). And the thing is, the kid eats. He eats so much that it probably costs more to feed him than Matt or myself. So the issue isn't that he isn't eating enough. But what he is eating isn't necessarily the highest in calories, and there is only so much I can do to make things more fattening. For instance, he loves bananas, which would be thrilling if he was an average kid with average nutrional needs. For him, though, it would be great if he'd eat some peanut butter on that banana, or cream cheese-based fruit dip, or something that would add some good fat to it. But he just wants the banana. He won't touch peanut butter in any shape or form. He's not a fan of ice cream (yeah, I know, weird child), so milkshakes are out of the question. People think it would be easy to get calories in the kids because what kid wouldn't want to eat ice cream or cake or all these great high-calorie foods? My kids.

Anyway, I could go on all day about the struggles with food around here. We know how it ended with Emberlynn (getting a g-tube when she was 18 months old). And now it seems we are headed down the same route with Cohen. I'll spare you all the fine details from my conversation with the head pulmonary doctor, including how I broke down in tears in front of her, but in a nutshell, we have two months to get Cohen to gain two pounds (assuming he doesn't grow any more in height), or we will need to make the decision about the g-tube. Now the doctors can't force us to do anything, of course, but they are highly encouraging it, so much so that I had two doctors in the room with me discussing it. Given the fact that I've never had two doctors come in the room to discuss anything (not counting students--Vandy is a teaching hospital, after all), I know they are getting serious about it. Dr. B, who I highly respect and talks to me like a person, not an ignorant parent, is worried that his slow weight gain will start to affect his lungs (weight gain is directly affected to lung function) and that it would be better to go ahead and do it rather than keep prolonging it and do any damage.

I understand this, of course, and would never want to hurt my child deliberately. The thing is that it's not just a matter of my son getting a g-tube to help with extra calories. It's that he has to have surgery; be in a hospital for days; adjust to tube feedings, which he may or may not tolerate well (think vomiting, diarrhea and/or constipation, etc.); be attached to a pole every night; relearn how to sleep (it's hard to sleep on your stomach when attached) and not roll around so that the tubing doesn't wrap around him or around his neck, which is something that happened a lot with Emberlynn in the beginning; most likely revert back to wearing pull-ups at night because of all the fluid being taken that will inevitably have to come out. More importantly and most concerning is that he will have to adjust to having something sticking out of his stomach, which will probably be very upsetting to him, at least initially. He also will most likely not eat much during the day because he is essentially eating at night. And even though the tube is supposed to give me and Matt peace of mind because we know we can be more in control of the calories he takes in, it is an added stress. It's another worry. Another thing I'll have to fight insurance companies about. Another "chore" to add to the crap my kids have to do everyday just to survive. Another thing to make my child's life more about CF and less about being a kid.

As much as I don't want CF to define my kids, it's hard when it's so consuming. Living with CF will never be easy, not as long as a cure is not discovered, and it only gets harder as time goes on. And as Emberlynn and Cohen get older, it will be harder for them emotionally, and they will start to ask those questions that will break my heart even more, like why they have CF and why they have to do therapies and treaments and others don't. Staying positive is hard when there's so much negativity around. And it's so easy for others to tell me to think positively when they're not the ones in these shoes. Trust me, I pray, mostly for peace, but also for my kids to be able to live a long life, with or without CF. I want to tell them that, no, they won't die from this, and not be telling a lie. I know that no one is guaranteed a tomorrow, but it's hard not to think about mortality when it constantly is in your face. As a Christian, I know it's the devil speaking, and I must tell him to get behind me, that Jesus is for me. But even Jesus suffered, and he cried out to his Father, and this is me, crying out for my children.

Pigs and Oreos

Just a couple of things I heard from my kids today...

Emberlynn: "I think God heard me when I asked him for two brothers. So I could be like Olivia [the pig on Nick, Jr.]. Does that mean Olivia's God is a pig?"

Following this, I had to explain to her that God is the same everywhere, even to Olivia, but Olivia is make believe, and that is why the pigs can walk and talk like humans. I think this confused her more, to be honest. I don't think she wants to believe that Olivia isn't real.

And a few minutes later, this is what I heard from Cohen as he ate his Oreos, his after-lunch treat: "Mommy, these taste like magic!" Good job, Nabisco, on your magical cookie.

"I can't believe I'm six!"

This is what my daughter said today on her sixth birthday. Probably because I kept saying, "I can't believe you are going to be six!" on the weeks and days leading up to it.

Six years ago, just before midnight on February 13th, I was going to bed dreading having to work the next day when my water broke. Well, it didn't break so much as slightly trickle, really. Which is why I thought maybe I had peed on myself. I wasn't due for two more weeks, and "they" (whoever "they" are) say that first babies tend to be late, so I figured it would be early March before Emberlynn Grace would, well, "grace" us with her presence (pun totally intended). My husband and mom finally convinced me I should go to the hospital, even though I knew I would be upset with myself if I had, indeed, peed on myself.

But nearly thirteen hours later, I was pushing, in so much pain but with so much anticipation, excited but scared beyond measure, and she was here. When I saw her face, there were no words. Just tears and floods of overwhelming, unexplainable emotion.

My daughter has no idea how much I love her, that she is a piece of my heart walking around on the outside of my body. She has no idea I was only twenty-one when I had her, that I had no real clue what I was doing, even though I had prepared for parenthood in all the ways I knew how. I wanted to be the perfect mom, and I set these impossible standards for myself. She has no idea that at the end of every day, I question my mothering, hoping that even if I do things wrong or in ways differently than how I planned, she will still feel loved and cherished.

She is my only daughter, and she may always be my only daughter, and I think I have taken that for granted. She isn't a little baby girl anymore. I have this one distinct memory of when she was a newborn baby: she was asleep in the middle of my bed, and I lay next to her watching her for what seemed like hours, thinking how fast she would grow and trying to just take in that moment. I swore I'd never forget what her face looked like at that moment, how she smelled, how small her hands were, how quick her breaths were. Because I knew I would blink, and it would be gone.

Well, I blinked again, and now she is six.

Happy Birthday to my beautiful, intelligent, creative, loving, silly, amazing daughter.

Black Bean Brownies

On Tuesday, I made Garbanzo Bean Blondies, a recipe I found on Jami Nato's blog. She also has a recipe for Black Bean Brownies, which I was dying to try as well. They are gluten-free and have protein and fiber. They even have spinach in them for some added nutrition. I'm all for hiding veggies in yummy things and have been doing it for years.

Jami notes that these brownies are better cold than warm and fresh (the exact opposite of how I like to eat brownies normally). So I figured I'd try it both ways to see if I agree. She is definitely right! Feel free to try it both ways also.

So here's what you need:

**UPDATE**:  Over time, we have changed some of the ingredients we use in recipes.  Instead of canola oil, I now use organic extra virgin coconut oil, and instead of refined sugar, I use coconut sugar or half of each (1/2 cup coconut sugar and 1/2 cup cane sugar, preferrably unrefined).  

• 1 can black beans (15.25 oz), drained and rinsed
• 1/2 cup fresh spinach (more or less)
• 3 eggs
• 1/2 cup oil (I generally substitute applesauce for oil in normal brownie recipes; however, I wasn't sure how it would turn out with this one, so I left it as is)
• 1/4 cup cocoa powder
• 1 TBSP vanilla extract
• 1 cup sugar
• 1 tsp ground coffee
• 1 tsp salt
• 1/2 cup semi-sweet chocolate chips
• (Note: I put baking powder in the picture thinking I would need it, but this recipe does not call for it. So just ignore that!)

After draining and rinsing your black beans, place in blender and pulse a few times to break them up. Add oil and spinach and blend, blend, blend until it is very smooth with no lumps (you may have to scrape the sides of the blender a few times with a rubber spatula through the process). At this point your mixture should look something like, well, poop. Yep, I said it. After I blended the beans, spinach, and oil, I put the mixture in a bowl because I figured it would be easier. But you can continue to do the rest of the mixing in your blender if your blender is a good one.

Add vanilla, cocoa powder, sugar, coffee, and salt and blend together. Jami says that here she threw in a TBSP of chocolate chips, but this is optional (I didn't add them here). Add the eggs last and pulse until well-blended. Don't overdue it, though. The mixture should now look like actual brownie mix.
Grease an 8x8 baking dish with cooking spray and pour brownie batter into it (it will be pretty thin). Sprinkle the chocolate chips all over the top (mixing them in will make them sink to the bottom, as I learned accidentally...more on that in a moment...). Bake at 350 for 40-45 minutes until middle is done. My confession: I totally forgot to mix in my cocoa powder until the very end. I already had the mixture poured into the dish and about 3/4 of the chocolate chips scattered over the top before I realized this, so I had to mix it in. This is why the following picture looks like it exploded or something. I'm just glad I caught it before baking it, otherwise I think these brownies would have been downright nasty.

Once they were done, I let them cool for a little while before cutting into them. I tried one warm, like I said, and they were just ok. I refrigerated them and tried one once they were cold, and it was way better. They have a coffee/chocolate flavor, and I didn't notice the beans, though you can tell there is something different about them. My husband can't decide if he likes these or the Garbanzo Bean Blondies better, but he likes them both nonetheless. I'm hoping to get Em and Cohen to try the brownies after dinner this evening.

Just a few words

Really, it's February already? As cliche as it sounds, time really does fly. My Emmylou will be six in less than two weeks. Six. Every year, I think, "Wow, I can't believe she is already [insert age here]." She is so much like me, though I'm not sure some of those aspects are good things (like trying to be a perfectionist and being so emotional about everything). Sometimes I look at my daughter and think, Oh, my goodness, she is so incredibly beautiful. And smart. And funny. And then sometimes I look at Matt and think, We made that kid. We did a good job. Even though we were young (still are, thank you!) and inexperienced and had no idea what we were really getting into, we have an amazing daughter. And two amazing boys who followed.

Speaking of my boys (or one of them), Kyden has been crawling for a few weeks. But it's not your normal crawl; it's more of an ape-walk thing where he propels himself forward. In any case, he gets around the house with no problem, pulling DVDs off the shelves and trying to "help" with Em and Cohen's treatments by grabbing the cords that attach to the Vest machines. Yesterday, he found one of his big brother's trucks and put one hand on it and was rolling it back and forth. It was one of the cutest things ever.

I don't want to leave Cohen out of this post, so here is a picture of him being silly in his Sheriff Woody get-up:

Garbanzo Bean Blondies

I'm sure just after reading the title of this post, you are thinking, "Um, gross." A few years ago, I would have thought the same thing. But I have altered mine and my family's eating habits drastically since Matt and I got married six years ago. We have made small changes over the years (like switching from "white" grains to whole wheat stuff, etc.).

But that's an entirely different blog (or several). This blog is about the Garbanzo Bean Blondies I

made from a recipe I found on fellow blogger Jami's blog. It gluten-free (although she points out that oats, which are one of the ingredients, is currently suspected to contain gluten, though I don't know this has been proven). We have not gone gluten-free, and I don't intend to unless it's medically necessary (I mean, we have enough nutritional challenges around here without hopping on the gluten-free bandwagon for social reasons), but I am all about making sweet treats more nutritious. I don't know the actual numbers, but I know these blondies have fiber and protein and are flour-less. They do, however, have sugar and chocolate, but if they didn't, you'd have blondies that taste like beans. Ick.

I would just say to hop over to Jami's blog for this recipe, but I had to modify a few things (namely, not mixing the ingredients in a blender as she suggests because my blender is apparently not as efficient as hers).

You will need:

• (1) 15-oz can garbanzo beans/chickpeas
• 2 tsp vanilla
• 1/4 cup almond butter (or peanut butter)
• 1 egg
• 1/4 cup oats
• 1 Tbsp ground flax seed
• 1 teaspoon baking soda
• 1/8 tsp baking powder
• 1/2 tsp salt
• 1 cup brown sugar (packed)
• 1/2 cup chocolate chips

Drain and rinse your can of beans. If you have a blender or food processor, I recommend pouring the beans in there and pulsing it to break up the beans. Otherwise, you can do in manually in a bowl. Once your beans are mashed up, place in a bowl and add vanilla and almond butter (or peanut butter) and mix together. Add egg, oats, and flax seed and mix together. Add brown sugar, salt, baking soda, and baking powder and mix again.

Finally, fold in the chocolate chips.

Grease an 8x8 baking dish (mine is glass) with cooking spray (I use canola oil spray, but I also have coconut oil, which would be great to use also). Scrape the batter into the dish and bake at 350 for about 4o minutes, give or take. The outside of mine was done before the middle, which was still pretty gooshy. I just kept checking the middle every few minutes with a toothpick until it was done. Let them cool like you would brownies before cutting into them.

My verdict: These were good with just a hint of the bean taste, but the sugar and chocolate cover it up quite well. If you are new to this (healthifying desserts), I don't know that I would recommend this as your first one to try, only because they taste much different than your traditional blondies/brownies, and you may be turned off by the idea entirely.

I'll update this later to let you know what my husband thought about them and if I was able to get my kids to try them (they are strange in that they have to be talked into trying everything, even desserts, whether it is healthy or not).

This is why I "stay at home", literally

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.