The Unknown

Here it is, nearly time to meet our fourth child and third son, Syler.  This time last year, we were in the "not trying but not preventing" mindset of another pregnancy, and a month later, I would find out we were expecting, which sadly ended in the first miscarriage I've personally experienced. 

Just ten months ago, in early September, I was in one of the darkest times of my life, trying to deal with the emotional devastation of losing a pregnancy.   I couldn't know what was to come, and thinking about becoming pregnant again seemed out of reach for some reason, but just two and a half months later, we learned we were expecting our rainbow baby. 

This pregnancy has flown by, and now that we are in the last few weeks, things are really hitting me.  There's been a fear in the back of my mind the entire pregnancy that something is going to happen to him and that I'll lose him like I lost the last one.  Irrational, maybe, but normal, I suppose.  When hours go by that I don't feel him move, I worry.  Then I sit and feel his reassuring rolls and kicks and am overcome with relief. 

Then I think about what it will be like when he's in the world, no longer in the safety of my womb.  Will he have CF?  Will we have created another child who must deal with all the crappy stuff that comes with having a chronic illness?  It's nothing we can't handle, and it's nothing we aren't prepared for, but I definitely don't have a "ho-hum" attitude toward it.  Just because we have two with CF and have been used to a life with the work that comes along with it does not make it easier to cope with knowing every child we bring into the world could have this disease.  We pray and hope and have faith that God knows what he's doing, and we leave it at that.  We are in no place to question His will, and even though it may be hard to accept at times, we must pray for that acceptance and know that understanding of that will may not come at all in our earthly lives.   And we will still praise Him, no matter the situation, no matter the storm.

This isn't to say I'm not scared.  I'm completely scared of being told Syler has CF.  I'm scared of  how life will once again change.  I'm scared of the judgment we will no doubt face from those around us.  I'm scared of my sweet Kyden being the only child without CF, who could grow up feeling like the outsider.  I'm scared of once again having a child that my husband I could potentially outlive. 

As much as I am afraid to face the reality of the possibility of CF, I am anxious to meet my son...to welcome him into the world and into our family...to see my other children interact with  him...and to watch another miracle grow and thrive. 

Syler, I can't wait to meet you, my little rainbow boy.  No matter what follows, you are loved, so very loved.

The Promise Post

I can't believe it's been over a year since my last blog post.  I mean, I can believe it, actually, because life is a bit busy, to say the least.  Being a wife and mom in general is pretty demanding on its own, but throw in all the extra day to day responsibilities like CF care, homeschooling, keeping up with my direct sales businesses (Thirty-One and Origami Owl), and any other extra demands that come along, and you've got one tired mama who hardly gives blogging a second thought.

There will be days that I think, "Hey, I should totally go blog so I can write about [insert topic here]," but then it doesn't happen.  And that makes me sad, because writing was always a passion of mine that got lost in the shuffle of motherhood.  I know a lot of women tend to lose a little bit of themselves once they become moms.  We sometimes forget about the things that make us who we are because we're focusing on taking care of our families.  And don't get me wrong, I absolutely LOVE being a wife and a mother.  There's nothing that could ever make me want anything more because there is nothing better.  Nothing brings me more joy than taking care of my family.

Blogging is a way for me to be able to both write and also tell the story of my family.  I know I won't remember every little moment, so it's good to have something concrete and tangible that we can come back to years later.  I can read things I've written and laugh, cry, ponder, wonder, and just...remember.

So I've said it before (and I'm really going to try to stick with it this time):  I am going to try to blog at least once a week.  Even if it's only to say hi to my future self.  Even if it's only to share something funny one of my kids said (which, let's be honest, my kids are hilarious).  Even if it's to talk about something that made me cry, or brought me joy, or made me think about something differently.

And, hey, since I'm a dweeb, I may even be corny about my posts.  Like if I post on Mondays, I could call it "Manic Monday" (although, everyday is pretty "manic" when you're a stay-at-home mom, right?).  Or Tuesday Tidbits.  And Thankful Thursday, or Thoughtful Thursday.  Funny Friday?  Hmm...this could be fun!

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.

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.

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.

Growin' Cohen

After a long day with plenty of ups and downs, I'm happy to end it with a positive blog. Cohen is finally back up in the "green zone" based on his BMI; he is now in the 50th percentile after having dropped pretty far below for nearly a year. The doctors were recommending a g-tube if we couldn't get his weight up soon, and they were really going to push it if this visit didn't show much improvement.

When he quit drinking Pediasure shortly after his third birthday, he lost close to a thousand calories a day (he was drinking 3 to 4 day, which equates to between 700 and 1000 a day). That's pretty substantial for a small child. Granted, he was eating food very well, but nothing that contained enough calories to make up for what the Pediasure was providing.

So over the last few months, we have been slowly getting him to drink more and more Pediasure, which has obviously been helping. I have been weighing him every week to monitor his growth. He put on two pounds alone over the last five weeks, so I knew going into clinic visit today that he would show a big difference from last time but didn't know if it would be enough to bump him to the 50th percentile or above.

Now we just have to maintain his weight and keep him at a steady increase. He is up to 1.5 containers of Pediasure a day, but our ultimate goal is 2 a day.

Both kids also had to get flu shots today. Not fun. Enough said.

Cohen had a routine chest x-ray following clinic. The x-ray allows the doctors to be able to see what's going on in his lungs better than just listening with a stethoscope.

Cohen also gave me a few good laughs today, which I wanted to share:

My sister Shauna was going to be coming along with us, so this morning when we arrived to pick her up and were waiting on her to come to the car, Cohen said quite theatrically, "Where is my lady?! Where is my lady Shauna?!" And when he saw her coming to the car, he announced, "There is my lady Shauna!" Too funny. I think he picked up "my lady" from Daddy, who has always called me his lady as a term of endearment.

Second, as we were waiting to be called back for Cohen's x-ray, he and Emberlynn met a new little friend in the waiting area. Cohen initiated a conversation with her, and his side went something like this: "How old are you?...I'm three....What's your name?...Oh, [little girl's name]? That's a great name...My name is Cohen....I have a brother...his name is Kyden...it's spelled K-Y-D-E-N..." A few minutes later, she had stopped playing with them and was looking sad about something, and Cohen ran over to me and said, "Mom! I think she is sad because I didn't hug her!"

And finally, for his chest x-ray, he was required to take his shirt off. So when it came time to put it back on, he told me, "It's ok, Mom. I'm fine without it." Needless to say, I explained why he had to put it back on, and he obliged. That's my silly boy!

The morning started out rocky (he wasn't the most cooperative boy at first when the nurse was trying to get his vitals and measurements), but it turned out ok. I have to remind myself that even though the kids know what to expect at every clinic visit and that it is something they have done countless times and will continue to do at least four times a year, they are still little and sometimes just don't feel like doing it. I can't blame them. I have those days, too, and I'm sure if I had to go through all the junk they go through at visits, I'd be a little crabby too.

My Plate Overfloweth

As I type this, my three-year-old son Cohen (soon to be four...wow, where has the time gone...) is running around in his sister's dress up clothes, adorned in a purple skirt, a butterfly tiara, plastic high-heels, and a pair of sunglasses with one of the lenses missing. He is also golfing with a plastic golf club. It's quite a sight. I have many pictures of him dressed up in similar ways, which I'm sure he will totally appreciate in later years, especially when he starts dating.

Cohen has been struggling with his weight gain (or lack thereof) for nearly a year now, and the topic of a feeding tube has come up several times in the last few clinic visits (more about that in previous blogs, if you're interested). His next clinic visit is next week, only a month from the last visit because they want to see if his growth is progressing and to therefore determine what our next step will be (tube or no tube). So I have been weighing him every week since the last visit and am happy to report he has put on two pounds in just four weeks, which I think is pretty significant. I hope the docs will think so, too.

As many of you know, I took on the challenge of homeschooling my oldest, Emberlynn, a couple of months ago when she started kindergarten. She is enjoying it and picks up everything with ease, but sometimes I feel like I have bitten off more than I can chew. We chose homeschooling because it was the most logical thing to do given the kids' treatment schedules; we felt she would have no life beyond school and treatments. She would have to get up very early every day and therefore go to bed very early at night (about seven p.m. to be able to get about ten hours). Between school, homework, dinner, treatments, and a normal bed routine (bath, brushing teeth, reading books), we didn't see how it would be possible to get it all done and her still have time to be a kid. Granted, there are plenty of CFers out there who do go to school and have similar routines, so I realize it can be done, but we felt like since I stay at home, it only seemed right to homeschool and free up time in her day for her to do other things (playing with her brother, going to gymnastics, etc.).

But I am admitting to everyone that my plate is just too full, and we have considered putting her in regular school next year (if not next year then the year after when Cohen goes to kindergarten so that they would be going together). Plus, part of me feels I am depriving Emberlynn of a lot of social opportunities that she would get if she was in an actual school around other kids. She really loved preschool, so I know she would do well in a school setting, but she also tells me she likes doing school at home.

I've really been at war with myself over this lately, wondering if we have made the right decision to homeschool. There are so many pros, but there are several cons, too, and I can't seem to ignore those. The bottom line is that I want my daughter to thrive and have the best life possible; I want this for all my kids, obviously. If I stop homeschooling, I will feel like I have failed in a way, but if I continue, I don't know that I can give it my all like I want to, which would not be by choice but because I am just not Supermom. And I can't do it all. And if you know me well, you know how hard it is for me to admit that. My husband tells me all the time that I can't do it all and am not expected to, but day in and day out, I beat myself up over stupid things that I feel like I should have gotten done, even if it's as petty as leaving dishes in the sink at night because I didn't get around to doing them.

What it comes down to is how my kids will see me as they look back when they are older. I don't want them to remember me as a crazy, stressed-out mom who felt like she had to do everything or would freak out. If that means I don't homeschool, then maybe I'm doing them a favor. For now, as they say, we will "keep on keeping on" and hope for the best.

"Tube" Be or Not "Tube" Be

A week ago today, the kids had a visit to Vandy for CF clinic. It's a time I generally dread, mostly because we are in for a long morning there (this time was three hours; our longest was around five). I try not to complain because they are a great group of health professionals who know and treat my kids well, but I'm sure most parents would agree that spending several hours at a doctor's office with nothing for the kids to do is not exactly ideal. This time, however, I brought the kids' portable DVD player and their lastest obsession, Disney's Tangled, to watch in the exam room since the majority of the visit is me speaking to the doctor/nurse/respiratory therapist/nutritionist/social worker/et cetera about how the kids are doing, their daily routines, their medications...the list goes on. Very little of it are the kids actually being "examined," so, needless to say, the DVD player was a lifesaver, and the kids were "tangled up" in Tangled. (Sorry, couldn't resist the pun.)

For the most part, their visit went well. Emberlynn had not gained much weight, but she has shot up in height over the last year, and her weight just hasn't quite caught up to that yet. Still, she is in about the 75th percentile for BMI, and as long as the kids are in the 50th or above, it's not a concern. Cohen, however, is only in the 31st; he was in the 22nd at his last visit, so there has been some improvement, but not much, even though he gained two pounds since his previous visit, which was the end of June. I thought gaining two pounds would have more of an impact, but my excitement was shot down when I learned it hadn't made much of a difference in his BMI.

If you have read previous posts, you will have read about Cohen's weight struggles (which have only been in the last eight months or so) and the suggestions we have received from the doctors and nutritionist to consider a g-tube. Emberlynn has a g-tube and has had one for four years now, so we are definitely not strangers to it, but we are worried about how Cohen will adjust to such a major change. Emberlynn was much younger and easy-going, so it was natural for her to be able to not notice a giant tube coming out of her stomach. Cohen, however, is almost four and would yank that tube out in a heartbeat, guaranteed, which is why Matt and I are reluctant to go through with the surgery. (We have been informed, however, that some surgeons there will place the button in immediately after surgery rather than the temporary hose-like contraption that Emberlynn had for the first several weeks. This will definitely help with our decision, should we decide to okay the surgery.)

The fact that Cohen has put on two pounds in two months, which is more than he has put on the entire year, gives me hope that he will catch up within a few months. He has been drinking his Pediasure, which I am sure is the primary source of his recent weight gain. Our goal is to get him up to two containers a day (currently, he drinks about one per day).

While all of Emberlynn's medications and dosages stayed the same, we are switching Cohen's antacid medication in hopes it will help the enzymes be more effective, which in turn helps him absorb more fats and nutrients from food, which therefore would lead to better weight gain. I also mentioned that Cohen has been sneezing a lot (every morning, he immediately starts sneezing when he wakes up and then sneezes throughout the day), so the doctor prescribed some Clarinex to help dry it up so that the drainage doesn't eventually become a problem in the lungs.

And while we are on the subject of the kids' growth, I will update you on Kyden as well. At his two-month check-up, he was in the 50th percentile for everything (height, weight, and head cirucumference), so he is right on track. He is currently outgrowing his 0-3 month clothes and size 1 diapers, something I am not used to at all (a fast-growing child) and is laughing (SUPER cute and heart-melting) and babbling a lot. He will lay in my lap and just talk and talk to me. He has also been trying to roll over. It's hard to believe that exactly just twelve weeks ago, he was a newborn baby taking his first breath.

We will be returning to Vandy on October 6 for a clinic visit for Cohen (mainly to check his weight) and for a routine chest x-ray. If his weight hasn't improved more, they will most likely push us a little more to do the g-tube surgery, but we feel that if he has made progress and continues to move up on the growth chart, then there is no need to do a g-tube just yet, if ever. Both kids return for a regular clinic visit on December 8, assuming they stay well (as in not coming down with any respiratory illness that would warrant a visit to Vandy). As fall and winter approach and flu season looms ahead, we always just pray for the best.

So Little Time

Where to begin? It's been months since I have posted; so long, in fact, that I'm too ashamed to even check when the last blog was posted. I constantly think to myself, "Hey, I need to blog about [insert topic here]," but then I never quite get around to it. For someone who used to consider herself a writer, this is very, very sad.

I could probably go on forever about everything that has happened over the last few months; however, I'll try to be brief, but I make no promises.

Most recently, my bouncing baby boy Kyden Isaiah was born on June 9, just eight days before my estimated due date. (My due date was also my birthday, so I'm glad he came sooner so that we could keep our birthdays to ourselves.) I did not go into labor on my own, nor did my water break beforehand. At 35 weeks, I was dilated to two, then to 3 at 37 weeks, and then 4 at 38 weeks. My doctor was convinced I wasn't going to make it even to my 38th week prenatal visit, so when I showed up to my 39-week visit, he was surprised to see my waddling in, still pregnant. After my examination showed I was past 5 cm and almost completely effaced, he decided to admit me that day (which made me do cartwheels inside) and break my water. Seven hours and 45 minutes later, after a completely drug-free birth, my baby boy was born at 11:15 pm weighing 7 pounds, 3 ounces and measuring 18 1/2 inches long. I was totally in love; there went another piece of my heart, stolen by another precious gift from God. I thought I couldn't love another little boy like I love Cohen, but I was so wrong. The love just grows.

The million-dollar question everyone was wondering about my entire pregnancy was whether Kyden would have CF like his older siblings. We prayed he would be healthy, but I was worried anyway, though I tried not to show it. His blood was drawn at Vandy and sent to a lab for DNA testing, and three weeks later, on July 20 (five days shy of the five-year anniversary of Emberlynn being diagnosed with CF), we found out that Kyden does NOT have CF. (He is, however, a carrier, but the only way this will affect him is if he has children with another carrier.) I received the call as I was driving to a doctor appointment, and I won't ever forget the feeling of relief that surged through my body and the tears I cried. I kept saying out loud, "He's ok. He's ok." I just couldn't believe it; I have a healthy baby.

I'll be honest, though. I keep waiting for the other shoe to drop, like they are going to call me and say, "Oh, we made a mistake...he actually DOES have CF." I have become so accustomed to having children with a disease that I have it ingrained in my mind that Matt and I can't have healthy children. It sounds terrible that I would think that, but I don't know what it's like to have a child with no health problems. I don't know what it's like to have a child gain weight normally who doesn't have to take medications constantly or have daily therapies; I don't know what it's like not freaking out inside when my child starts to show signs of sickness that could land them in the hospital and irreversibly damage their lungs. I know I should stop thinking all this craziness and just revel in the fact that my child is healthy and enjoy every little moment with him, but this is such new territory for me, and I have to retrain my brain, I suppose. And, as my friend Nikki reminded me, I have to remember to take it one day at a time and not worry about what may become.

Right now, Kyden is eight weeks old and such a joy, I can't even put it into words. He melts my heart just by looking at him, and despite being sleep-deprived and spread so thin most days, I am loving having three kids and am so glad we decided to let our family grow. Kyden fits right in. Emberlynn and Cohen absolutely adore him, and they have not shown a speck of jealously. I was initially worried that Cohen would have a difficult time adjusting since he has a) been the baby for three and a half years and b) is a big Mommy's boy, but he thinks Kyden is totally awesome and can't get enough of him. We actually have to tell the kids to back off a little sometimes because they can be a bit TOO loving at times, but all in all, it's wonderful knowing how much they love having a baby brother.

Emberlynn is five and a half and is officially a kindergartener. We decided a couple of years ago that I would be homeschooling the kids, hopefully at least through elementary school. So this week, we completed our second week of homeschooling. Emberlynn looks forward to it each day and has been doing very well. I must brag about my daughter for a moment, though: She is very intelligent and already knows most of the kindergarten cirruculum standards, and if she could "test out" of it, I'm sure she would with flying colors, but she is enjoying all the activities we have been doing and picking up on new information very quickly. I love being able to teach her and experience it with her.

Health-wise, Emberlynn has been doing well. I think she's had one cold in the last year and maybe one virus, so overall, she has stayed pretty healthy. I always get worried when winter comes around with all the flu and cold possiblities, so in a few months, I'll be biting my nails that praying that my kids won't get sick enough to warrant a hospital visit.

My "big little man" Cohen has been doing ok as far as his health goes, expect for his lack of weight gain over the last several months. They have expressed concern at CF clinic, and though he is not in the "red zone" (green zone is where they want CFers to be, yellow zone is a "cautionary" zone, which is where he is right now, and the red zone means action needs to be taken to improve their health), they are worried he will continue to grow in height but not gain weight. He eats well, but around his third birthday, he quit drinking Pediasure, which was a major source of calories in his diet. (One container of Pedisure has 237 calories, and he was drinking three to four containers a day). So essentially, he lost about 700-950 calories a day, which is a big deal. The only beverages he will drink are water or tea. He has never liked juice, so the high-calorie juice-like drinks we have tried are a no-go. He won't even drink regular milk, so we can't even get the extra calories in there. I add calories where I can (adding butter, cream, and cheese to certain foods he eats), and he eats three meals plus two snacks a day, but his weight just won't budge. He's pretty much at a "plateau", and we are constantly trying to come up with ideas. Recently, I have been able to get him to drink Pediasure using what I can not call anything else but bribery, I'll admit. He loves tea, and although he is not allowed to have very much each day anyway, he is not allowed to have any unless he drinks a certain amount of Pediasure. Though I am not proud of my method, it has worked, and he has been drinking a container of Pediasure a day, which at least gives him almost 250 extra calories.

If Cohen does not start gaining weight, and he starts dropping on the growth chart and falling into the "red zone", there have already been discussions about g-tube placement so that we can give him high-calorie supplements in overnight feeds, which is what we have done with Emberlynn since she was eighteen months old. I absolutely refuse to go that route unless it's necessary. I want it to be a last resort. I know my son, and he will not be easy-going with having a huge tube coming out of his stomach post-surgery; he would totally rip that thing out. And beyond the surgery and recovery, he would have a very difficult time adjusting to being connected to a feeding tube every night. It was easier for Emberlynn because she was so young and still had such a "go with the flow" attitude. Cohen is three and would be very defiant with something like that. So when I say it has to be a last resort, I am not wavering. We will do all within our power to help him get back on track with his weight gain sans that g-tube.

Emberlynn and Cohen's next clinic visit is August 25th, so I will try to post about that to give an update on weight checks, etc.

I'm hoping this gives a good enough update on what's been going on with us over these last many months. I've promised myself to blog more often, but I'm really now sure how well I'll be able to stick to it. Once a month would be ideal, but I guess we'll see.

In Everything, Give Thanks

On October 10th, we learned we are expecting our third child. We were elated beyond words. We had been planning this for a long time and had been trying for several months, asking the Lord in our prayers to bless us with another child if it was His will. And He definitely showed his sense of humor because I am due on my birthday.

Now, if we were any "normal" family with completely "normal" kids, most people would just be happy with us and not think much about it. Those who have known us for years know that we have always wanted three or four children from the start, before we knew that Cystic Fibrosis would become the center of our lives. But there are those people out there, whether they are willing to admit it or not, who think we are completely stupid, negligent, moronic, naive, irresponsible...you pick the adjective, and I'm sure people have thought it. Does it MATTER what others think about what I do, whether it's wearing a certain pair of shoes with a certain shirt or choosing to have another child? Well, no. I know that. But I need to set some things straight for my own peace of mind.

First of all, NO ONE is guaranteed a healthy child, no matter how healthy you are or seem and no matter how "by the book" you do things before, during, and after pregnancy. Most mothers-to-be have an image in their minds of their perfect baby and don't give much thought to the possibility that their child will be anything but. Take for example an article I read recently about a young mother who was preparing to deliver her second daughter, who had planned every miniscule detail down for her baby's birth and had these picture-perfect images of her two daughters growing up together and doing all the sisterly things you would imagine. Her labor went beautifully, and she delivered a gorgeous baby girl--who had Down Syndrome. Or we can get closer to home and talk about my sister, who had her first baby, a daughter, in 2004, who was later found to be profoundly deaf in one ear and moderately deaf in the other. I know several other women who have lost babies, either before or after birth, for various reasons, but I won't be mentioning names or specifics because I haven't asked for their permission. But the point of mentioning any of this is, despite having unhealthy children, it doesn't mean they don't want more children later on or that their decision to have more will be dictated by those circumstances.

Yes, my situation is a bit different. What my children have is genetic and life-threatening. Every child we have has a 25% chance of having CF and a 50% chance of being a carrier of the gene (just like me and Matt, which is nothing to worry about unless two carriers have children together, obviously), but essentially, every child has a 75% chance of being fine, which makes the "odds" in our favor. But I know without a doubt that God chose us, for whatever reason, to be the parents of these children. He knew, even if we didn't and still don't understand it, that we are strong enough to be able to perservere through the struggles that come with being CF parents (just like so many other parents of children with chronic conditions). I also know He wants to give us the gift of more children, otherwise He wouldn't have and I would not be carrying this precious life inside me right now. So I dare anyone to question God about his will and ways because you won't win the argument.

Am I worried my third child with have CF? Honestly, even though the thought is always in the back of my mind, it hasn't scared me yet, and I don't know that it will. I am learning that "worry is futile and faith is fruitful" and that worrying will get me nowhere and only make me miserable. My faith in God's plan for us and this baby is not an "I believe everything will be hunky dorey" faith, it's an "I believe God will give us only what we can handle" faith. So if that means we are given another child with CF to love and raise, then that's what we are going to do, and we are going to be thankful for the gift of getting to be parents to another amazing gift, and as my pastor reminded us, "the chance to raise another saint." Ephesians 5:20 says, "Always give thanks to God the Father for everything..." So even if we don't always have the picture-perfect life, or 100% healthy kids, we are thankful for all we do have and will continue to be thankful no matter what circumstances in which we find ourselves.

The bottom line is don't judge what you don't understand. If you have been blessed with healthy children and a relatively "normal" life, remember to praise our Lord and give thanks and not to take it for granted because you never know when life can take an abrupt turn. And please don't claim you know how it is to wear these shoes of mine until you've walked in them or what you would do in my situation.

And look at it this way: If we had chosen to not have any children after Emberlynn based on the CF circumstances, we wouldn't have our wonderful, loving, fun, precious son Cohen, who brings so much joy to my life that my world would be absolutely broken without him. And we wouldn't have this new little baby on the way, who we already love and adore even at the size of just a jelly bean.

Scans, Shots, and Silly Kids

Today we trekked to Vanderbilt for the last CF Clinic visit of the year (and hopefully the last Vanderbilt visit of the year period, in hopes that Emberlynn and Cohen don't pick up any illnesses that warrant hospital stays).

My mom went with us at my request because Emberlynn was scheduled to receive the first of what I hope is very few CT scans (read my last CF Clinic post for details on my initial feelings about the CT), and I knew I would be unable to be in the room with her due to being pregnant, so I asked Mom to stand with her because I didn't want her to be scared all by herself. Cohen and I weren't even allowed to go down the hall with them, which I understood but was still a bit disappointed about since I am always worried about the kids when they have to undergo new procedures. In the meantime, Cohen and I watched the trains in the lobby and went outside to see the koi fish in the pond. The CT scan was not supposed to take very long, but I was still surprised when Mom and Emberlynn were in and out within five minutes. Mom said she did awesome; she did everything she was told and had no issues. Emberlynn told me, "He took my picture!"

Afterward, we headed upstairs for CF Clinic. The kids were weighed and measured as usual (Emberlynn gained a little over a pound and Cohen stayed the same, none of which is worrisome, as they are still in the "green" zone for BMI). Later in our visit, the doctor went over the CT scan results (and we were able to see the images on the computer screen) and explained everything very well to us. He didn't give us the "final" say on the lung findings (a radiologist will look over it to look for anything that might be serious), but he said from what he could see, they looked "normal" for a kid with CF (all CFers lungs look abnormal in some shape or form, we were told). He did notice some mucus "build-up" in the bronchial areas, which is normal but can cause problems if it stays there and builds and builds. He asked what her normal chest clearance routine is like, and I told him Vest twice a day and Pulmozyme (an inhaled medication) once a day, and he said that we just needed to continue it and not slack off (not something he needs to worry about).

We didn't have to see the nutritionist today, which is nice (not that we don't like her, it's just one less person we have to worry about seeing that ends up taking up more time on an already long day with two kids who get bored pretty easily in a room that has no forms of entertainment). An RT (respiratory therapist) came in to measure Cohen because he is old enough for a Vest, but alas, his chest is still too small by 1/2 inch (it's just as well, though, because the Vest terrifies him); therefore, we will continue with manual CPT until he gets big enough for the Vest (they will measure him again at their next clinic visit in February).

Emberlynn was due for her annual labs. In the past, this is something we have had to go to the next floor to have done, but now they have someone come to the exam room to draw blood, so we didn't have to go anywhere, which was nice. Emberlynn still cried a little despite have the EMLA cream to numb her arm (probably because she saw a needle going into her arm, which is scary for most kids anyway). Neither of the kids likes to see the other upset, so it was no surprise when Cohen ran to me and expressed his concern for his sister: "Emberlynn is crying! Her arm is hurt!"

Finally, both kids needed their flu shots. Shots are always something I forewarn them about. I let them know that they will be getting one (or several) and that it hurts for a minute but then it will feel better. Both always seem fine with this until it's time for the actual shot. But they were troopers as usual. As the nurse who took care of them through their entire appointment was preparing Cohen's flu shot, she told me that my kids are very well-behaved and that she was impressed by their cooperation with everything. It's always nice to receive compliments, especially in the midst of a day that is never looked forward to, and I thanked her.

And since part of the title of this post is "silly kids", I will say in closing that, due to a long day resulting in no naps, my kids got the giggles this afternoon, making them even sillier than they already normally are. I love my kiddos, but this Mommy is most definitely looking forward to their bedtime tonight and a lazy day at home tomorrow.

Today CF Stands for "Cute Fatties"

Fellow CF parents whose kids have struggled with weight gain can relate to my excitement when I share the news that my kids have gained a pretty substantial amount of weight since their last clinic visit in May. Cohen has gained over 2 pounds and is now 30.3 pounds; fortunately, he has not really struggled with his weight since he started taking enzymes at 7 weeks old, but weight gain is always exciting nonetheless when it comes to CF. Emberlynn, who struggled with weight gain even after diagnosis and enzyme treatment and ended up having a g-tube placed when she was 18 months old to help with her growth, made my jaw drop today; she has gained over 4 pounds and is a whopping 38.5 pounds! I knew those 4T shorts were getting tight in that waist, but I never would have guessed she'd gain that much! I was ecstatic. My sister, who went with us this time (who I am extremely grateful to, seeing as she had to take Cohen potty 4 times while I spoke with the medical team) and I called them the little fatties.

Isn't it ironic how in today's society, what with its obese kids and health crises, I am rejoicing for my kids' weight gain? Isn't it also ironic that this chubby mommy, who so desperately is trying to shed the pounds, is also desperate for her children to do just the opposite?

So, to get back to the clinic visit update, there were a few changes made to the kids' existing treatment routines. Emberlynn will actually get to decrease her tube feedings (yay for breaks, not just for Emmylou but for Mommy and Daddy, too!). Presently, she is on her feeding tube every night, but we get to knock it down to 5 nights a week. Can we say weekend trips with no tube junk to haul with us? Hallelujah for that! Her enzyme dosage is going to increase to keep up with her increase in weight, so we are bumping it from 3 caps to 4 at meals and before and after tube feeds.

I was also told that, per CF protocol, Emberlynn has to have a CT scan on her lungs soon. It will give the doctors a better look at her lungs and allow them to see how they are looking, in a nut shell. I was also forewarned that her lungs will look abnormal no matter what because of the CF and to be prepared for that. Coincidentally, I just read an article last week about CT scans and how the high radiation exposure from them can cause cancer later in life. I brought this concern to the doctor's attention, and we discussed it further. I agreed to schedule the scan, but only after telling her that I'd need to discuss it with Matt and also further research the risks. It's ultimately our call, of course, whether we want to risk it. It's a hard decision to make, and it will take a lot of weighing the pros vs. cons and risks vs. advantages. If we decide against it, we can cancel the appointment.

As for Cohen, he is going to be starting Pulmozyme, which is an inhaled medication with which we are quite familiar (Emberlynn has been on it since she was 22 months old). He will take it as a breathing treatment once a day. I'm a little worried that he will be upset by it for a while; after all, he's only two, and he's never been forced to leave something on his face with vapors going in his nose and mouth. It'd freak me out, too. We discussed switching from manual CPT to the Vest, but I told the doctor that we wanted to wait a little while longer because we did a "test run" recently with Cohen and the Vest, and he was, to put it mildly, less than thrilled. Emberlynn thought it was funny her first time on the Vest, but Cohen was completely terrified.

All in all, the kids' clinic visit had a positive outcome, despite the obvious reasons for clinic visits in the first place. They are both doing very well, and I can't ask for more than that.

Conner

Conner Reed Jones, April 14, 2003 to June 24, 2010.

The angel in waiting has finally gotten his wings and will never struggle for breath again.

He will always be in my heart as well as in the hearts of so many.

I refuse to sit by and watch anyone else die from this disease. We WILL find a cure. We WILL see our children grow up.

Just Breathe

How we take for granted so many things, even something as basic as breathing. Across the country tonight, a little boy named Conner is struggling to do just that.

I found out a few hours ago that 7-year-old CFer Conner is not expected to live through the night. He has been given morphine to make him more comfortable as he leaves his earthly body and arrives to meet his maker in a place where pain is nonexistent and he'll never struggle for breath again.

I hugged my kids a little tighter today, gazed at them a little longer, and told them I loved them until the words almost seemed to lose their meaning. Because it could be them. CF or not, my kids are alive tonight and will open their eyes to the sunshine pouring through their windows tomorrow. I will get another day with them, another day of smiles and laughter and hugs and kisses and playtime and funny conversations. And anything that might seem "bad" in their lives or in mine are insignificant because my kids are not fighting for their lives.

The Jones family occupies my mind, my heart, and my prayers tonight. May they find comfort and peace in this time of unbearable pain.

My Biggest Worries

This weekend, my husband and I are embarking on a weekend getaway for the first time since we have been married (and, hence, for the first time since we have had kids). We have been married for 4 1/2 years, so we felt like it was long overdue for some couple time sans kiddos. The kids have each spent a single night away from home less than an handful of times; I have spent two days away from Emberlynn on only two occasions (once when I gave birth to Cohen and once when Cohen was hospitalized for CF-related reasons).

We have talked about going on vacations and getaways by ourselves, but we have never actually gotten around to doing it. And I'll confess, it's mostly my own fault that it hasn't happened before. I'm a worrier and a bit uptight, so when it comes to my kids, those qualities are only magnified. If my kids were "normal" kids with no health concerns or special needs (i.e. if they didn't have CF), I would probably be more comfortable leaving them behind and would have done it long before now, I'm sure. But the reality is they aren't just normal kids with basic needs. They require tons of extra stuff that, after typing out all the kids' "instructions" for my mother, consumed over four pages of paper.

Over this past week, I actually made myself physically sick thinking of all the preparations I'd have to make just to be able to go on this weekend trip (packing, typing instructions, etc.). It's not like I can just pack each kid an overnight bag and send them on their way. Sending them anywhere, for even just 1 night (and in this case, they'll be gone for 2), requires packing up what seems like half the house. Aside from the normal clothing and toiletries, we have to pack a giant Vest machine, an air compressor (for nebs), medications, a feeding tube pole and machine plus all the stuff needed for the actual feedings, special food for the kids...the list goes on. It's insane, and it's the biggest reason we don't really go much of anywhere and also the reason we are grateful when we do.

But the packing and preparations part is not my greatest worry as far as sending the kids away. Rather, it is my worry that the things they require won't be done or done right. I realize there are different ways to doing things and that as long as it gets done I should be happy, but these are my kids I am talking about, not a list of chores that need to be done around the house. If one of them misses a treatment or doesn't get a medication at the time they need it, it's not like a pile of dirty dishes left in the sink that can be done later on. This is their health I'm dealing with, so it's not something that can just be left to "get to" at will. And even though they are staying with family members that see us regularly, they still don't understand how much we actually have to do on any given day until they actually are the ones doing it. I'm afraid something will be forgotten or not done correctly simply because they are not used to doing it on a regular basis. It is second nature to me because I do it every day, and it is as much a part of my routine as brushing my teeth or eating a meal.

Having all this to worry about always ultimately makes me change my mind about planning any getaway trips with my husband, even though we really need that alone time together. I always say, "Maybe when they are older." I've been saying this since Emberlynn was a baby, and she's almost 4 1/2.

Everything is booked and paid for (hotel, white water rafting, river boat dinner cruise) and nonrefundable, so even if I wanted to change my mind, I couldn't. I am still a little worried, but I've had time to talk myself into it, and I know it will be good for my husband and I to get out of "Daddy and Mommy mode" and focus on "husband and wife" mode instead for a couple of days.

So tomorrow, we are shipping Emberlynn and Cohen off to Grandma's house for two days. I'll try to refrain from calling constantly, but I will definitely be calling at bedtime to check in and say goodnight to my babies. I'm sure they'll have so much fun playing with everyone and swimming in the pool that they'll hardly notice we're gone, which will help me feel a little bit better about leaving them. Just a little bit.

The "Uneventful" Clinic Visit

On Thursday, we trekked to Vandy for the kids' quarterly CF Clinic visit. Despite the flooding in Nashville and various road closures, we actually made it to Vanderbilt in record time. Matt was able to go to this appointment since he is unable to work indefinitely (his work was one of the businesses that was flooded last weekend), so despite the fact that we basically have no source of income right now, it was nice to have Daddy there with us.

I was very proud of Emberlynn because she volunteered to go first (she usually volunteers her brother to be the first to go) and was extremely cooperative for everything, even the throat swab (which she usually cries about). She was absolutely perfect, and I couldn't have been more proud of her. Cohen was a bit crabby due to being up late the night before and having to get up early in the morning. He was cooperative for the initial exam by the nurse (height, weight, oxygen level, and temp checked) and when the doctor examined him (listening to his lungs, feeling his belly, etc.). However, he hated having the EMLA cream put on him to numb his arms prior to having his blood drawn, and he also took great displeasure, as per usual, at having his throat swabbed. (And, on a side note that has nothing directly to do with the appointment, the nurse we saw had an uncanny resemblence to Tina Fey and also possessed her mannerisms...weird!)

I call this appointment "uneventful" because the kids were both given good reports, and no changes were made to their medications or treatment plans. However, to anyone who doesn't go to these appointments on a regular basis, I suppose it would be pretty eventful because of all the things the nurses and doctors have to check and the number of people we have to see (nurse, doctor, dietician, social worker, and respiratory therapist).

I believe the most thrilling part of the whole visit for the kids was getting Dora the Explorer stickers and coloring sheets from Nurse Tina Fey. Emberlynn stuck a sticker on each one of us, so on the way out, we were all sporting our awesome Dora stickers with the wonderful knowledge that the kids are doing well despite that ugly disease called CF.

Prayers

It's been a while since I've blogged, and I wish I could say I had some kind of great story or funny anecdote to share with you. But I don't. All I can think of is how much I hate Cystic Fibrosis and how unfair it is for so many people to carry this burden. There are so many diseases and disorders and syndromes and cancers out there that affect so many people, but until something affects you or someone you love, it's impact is not as great.

I am blessed that although my children have CF, they have been relatively healthy, but because CF is a progressive disease, it's always in the back of my mind that things can change in a heartbeat. To borrow a line from another CF parent, as soon as my children took their first breaths, CF began taking away their tomorrows. Only half of people with CF will live to be 37. Half.

There is a CF mom right now whose 7-year-old CFer, Conner, has been put under hospice care. This boy has been through hell, and he just turned 7. I can not imagine either of my kids having to go through even half of what this boy has gone through or fight as hard as he has fought, and yet the end of his life is near, a life that never really even began. Like any child, he talks about what he'll do when he grows up, not realizing that he'll be lucky to even make it to his eighth birthday.

My heart aches for Conner and for his family. His mom, Sarah, blogs about Conner and their everyday struggles, at http://notsobrightandshiny.blogspot.com/. I do hope you visit her blog. She has the courage and strength to speak not only for her son but for all CFers, educating others on this seemingly invisible yet ugly and devastating disease.

I know I could blog forever about CF, about my kids and their struggles, about Conner and his fight, about how much CF sucks, but I've cried enough tears tonight and dwelled in the crappy knowledge that my kids have CF--and other peoples kids have CF--and we can't fix it. We can only pray that one day there will finally be a cure. That one day our kids will be fixed. That one day they will become what they want to be "when they grow up." That one day we can say they won't die from CF and it will be the truth.

For now, I will love my kids with every fiber of my being and never forget to tell them that. I will be the best mom I can be and give them the best life I can give them. In the words of Conner's mom Sarah: "I know [Conner] is only on loan to me from God...and I count each day as a blessing...had I know he was only going to be here with me for seven short years, I would've made them better. I would've been better. I would've done more for him. More smiles...more family memories...but now...it's all moving so swiftly in the other direction that all I have are the undones and what-ifs...and that's devastating." I pray that I will never have to say these words myself. I pray for Sarah and for the rest of Conner's family, that they can find strength and comfort in a time when it's difficult to find such things. Most of all, I pray for a cure for CF, so lives like Conner's won't be lost anymore.

Damn you, CF.

Chubby Mommy's Not-So-Chubby Kids are Chubbier!

Yesterday, I took the kids to Vanderbilt for their regular three-month CF Clinic visits. We had to be there by 8 am, which is not a time I would have chosen but was the only time available for this day. I already loathe driving in Nashville, so having to drive in Nashville during the morning rush hour was not something I was looking forward to.

I intended to leave our house at 6:30 am to get there on time, but that didn't exactly happen. Emberlynn was complaining of her "belly hurting" (something we have been hearing from her ever since the doctors switched her to a different feeding tube formula and a topic I was going to be bringing up at clinic later), which usually means she has to do some business in the potty. As soon as we got into the bathroom, Emberlynn threw up all over herself and the floor, enzymes and all. She has a very sensitive stomach, so I think she just felt nauseous from her stomach bothering her. (She was fine the rest of the day). By the time I got her changed, the floor cleaned up, the car warmed up, and the ice scraped off the windows, it was 7 am, and I knew we were going to be late. To top of my crazy morning, I realized I forgot my delicious (and caffeinated) coffee at home; since we were already running late, it was too late to go back for it. I was a bit heartbroken over this.

After battling traffic and people who clearly don't need driver's licenses, we arrived at Vanderbilt half an hour late. (I HATE being late for anything, much less an important doctor's visit.) Fortunately, they were still able to see both kids quickly and without conflict, for which I was very grateful.

In the first room, the kids were weighed and measured by a nurse as usual. Cohen is now big enough to stand on the "big kid" scale and stand against the wall to measure how tall he is. He did a great job, and I was told he had gained a little over a pound, which is still good. (I later found out that he is in the 64th percentile, which is awesome; anything at or above the 50th is our goal!) The best news, however, was that Emberlynn had gained a whopping 3 pounds! She has never put on that much weight in a 3-month period. I was extremely excited, as was the doctor when she looked at the chart later.

Next, the nurse took the kids to the exam room where we waited on the doctor. She examined each child thoroughly and said they both looked great and sounded great (when she listened to their lungs). She saw no need to change any current meds or to change any dosages on the current meds, so that was nice to hear. She asked if I had any concerns or questions about anything, which is when I brought up Em's stomachache complaints, which is more of a topic of discussion with the nutritionist, Kim, who would be coming in after the doctor was finished.

Kim was very pleased with both kids' progress as far as weight gain went, so we mainly discussed Emberlynn's stomach issues and how to address them. We decided to cut back her overnight feeds from 24 ounces to 16 ounces (3 cans to 2 cans) and to see if she would drink the third can during the day, whether it be with a meal or as a snack. If she wouldn't drink it (she's never been thrilled with the taste of the high-calorie drinks), Kim suggested doing a one-hour tube feed during the day. She said if changing it up like this did not work, we would try something else.

We also saw a respiratory therapist, who we have to see at least once a year just to make sure we are performing the therapies and treatments correctly and cleaning all the equipment properly. I found out that Em could get an upgraded nebulizer machine (her old one hasn't been working as well) because it had been 2 years since her last one. The RT called it in yesterday, and it arrived today. They sent a kid-friendly one this time; it's the same machine, but it's green (Em's favorite color) and has a fish on it, so she was super thrilled.

Last, Em had to have her H1N1 booster shot (Cohen had his booster at his 2-year checkup with the pediatrician). She didn't fight them at all (which was quite shocking), and she only cried for a minute or two afterward. I was very proud of her.

Even though I had a rocky start to the day, the positive outcomes of the clinic visit definitely made up for it. It is always wonderful to hear that the kids are in the "green" zone (there are yellow and red zones, too), which means they are doing very well in all areas. The kids' next visit will be May, and I will pray, as I always do, that the updates will stay positive.

Our First Real Halloween

I was particularly excited about Halloween this year because it would be the first time we would take the kids out trick-or-treating. Emberlynn was 8 months old her first Halloween, and while Matt was at work, she and I stayed home and handed out candy to the trick-or-treaters (okay, I handed it out. And ate some.)

She was 20 months for her second Halloween and spent that week hospitalized at Vanderbilt, which was upsetting for obvious reasons and disappointing because I had made her costume that year. (She was a fairy, and I made her a skirt from tulle.)

Last year, I took the kids to a Trunk-or-Treat in Westmoreland (again, Matt was working), but both Emberlynn and Cohen were quite grouchy, which did not make for a memorable Halloween.

This year, however, Emberlynn got very into Halloween. She didn't mind being dressed up in her costume (which I did early on to get Halloween pics of the kids for photo cards). We explained to her what trick-or-treating was, and she seemed so amazed; I'm sure she was thinking, "Wait, you mean, people just give you candy? No way!" We explained that we would knock on a door and someone would open it, and she would have to say, "Trick-or-Treat!" and then they would give her candy. She would recite this to us, so when the big day finally came, she was very eager.

After meeting some friends, their kids, and my sister-in-law for pizza, it was trick-or-treat time. At the first house, the lady handed each of the kids a fun size package of M&M's, which are Emberlynn's favorite candy. Instead of holding out her bucket, Emberlynn wanted the lady to put it in her hand. You could see her excitement when she saw what kind of candy it was, and she exclaimed, "I got M&M's!" and requested that she eat them right away. I think she would have been happy with just the M&M's, but we told her we had more houses to visit and that she could eat them later. We visited several houses throughout the neighborhood, and the kids received all sorts of goodies (some of which they can not or will not eat that will be thoroughly enjoyed by Mommy and Daddy). Emberlynn thanked everyone we visited for the candy and wished each person a happy Halloween.

Since Cohen is not quite two, he was unable to fully comprehend the experience, but he was very good the entire night and loved being outside. He held onto his own bag of M&M's almost the entire time we were out (apparently, M&M's are the holy grail of trick-or-treating, at least for my kids).

After trick-or-treating for about an hour, we called it a night and allowed Emberlynn to pick one thing from her bucket to eat. I don't have to tell you what she picked.

Vandyland-October 2009

We are fortunate to live close by Vanderbilt Children's Hospital where, among so many things, they specialize in care for kids with Cystic Fibrosis. VCH has become somewhat of a second home to us ever since Emberlynn was diagnosed with CF in July of 2006 at the age of five months. We were all too familiar with the routine of it all when Cohen was also diagnosed in February 2008 at the age of six weeks.

The kids go to what is called CF clinic every 3 months (less if they need to be seen sooner because of concerns with their weight, etc.). People we know like to be informed about how they are doing, so I guess blogging is a good way to keep a lot of our friends and family up to date on their condition.

Last week, the kids had their 3-month appointment. First, they are weighed and measured, their temp is taken, their oxygen level is measured, and their throats are swabbed (to be cultured for any bacteria). They are very laid back about all of it, but they do not enjoy having their throats swabbed (and for that matter, neither do most people I know), but it has to be done. Weight gain is a big deal when you have CF (because weight gain is related to good lung function, which is very important), so we are always hopeful that the kids have gained weight since their last visit. Cohen was 25 pounds, 11 ounces, a 2.5 pound gain from July (which is VERY GOOD), but Emberlynn had gained only a few ounces, which is not good but not horrible, either. Cohen is the better eater, so he tends to gain more weight than Emberlynn, who has a g-tube and receives overnight tube feedings to help add calories to her diet. (Both kids are on a high-calorie diet.)

After all this, we move to the actual exam room and wait on the doctor to come in to talk about how the kids are doing. The doctor was pleased with the kids' progress but was slightly concerned about Emberlynn not gaining as much weight. She decided Em needed to be switched from her Zantac (an acid reducer) to an acid blocker (that I can't remember the name of at this point) to help her absorb her enzymes better. (The kids take enzymes every time they eat to help them absorb the fats and nutrients from the food.) When she examined Cohen, who has been fighting some cough and congestion, she discovered both ears were infected (mind you, he had just gotten over a double ear infection maybe 2 weeks prior to this visit), and she gave him a prescription for Augmentin.

When the doctor leaves, the dietitian the kids see, Kim, comes in and discusses their diets and advises me on any changes that might need to be made (increases in enzyme dosages, tips on increasing calories for each meal, etc.). She did not make any changes to either of the kids' current enzyme dosages, but she did suggest switching Emberlynn from her current feeding tube formula to a different kind that has more calories per ounce but would not add to the amount of formula she would get overnight.

Normally after all this we would be done and would schedule our next appointment at the front desk before leaving, but this day Emberlynn needed her annual labs done (Cohen had his done in April). Fortunately, the nurses had put EMLA cream on both of Emberlynn's arms (shown in the top pic where her arms are red) that numbed the areas so that she wouldn't feel the needle going in when they took blood (they take about 8 vials). So to the next floor up we went, where they called us back fairly quickly. Emberlynn didn't even flinch when they put the needle in her arm, so I highly recommend EMLA cream for anyone with small children who will be getting shots or having blood drawn (it takes about 30 minutes for the area to become numb, so it does need to be done in advance).

Because of Emberlynn's insignificant weight gain, the doctor wanted to see her again in 6 weeks as opposed to 3 months, so we will be returning in December to see if things have improved for her. Cohen will also be seen then for the purpose of keeping them both on the same appointment schedule.