Sound Off Saturday: Treatments and Vacation

Being a holiday weekend, we couldn't help but think of a great Sound-off Saturday topic: Vacation and Treatments.

When we're not in the routine of work (which is really just on vacation or during holiday weekends), treatments are the one part of our routine that must stay the same - which isn't always easy while trying to enjoy a break from our normal day-to-day routine. Obviously, when we travel, go on vacation, or have a "staycation" during holidays, treatments are still a must. For some reason, vacations are the only time that I really notice treatments. When we're in our normal routine, I never really notice Ronnie's first 2-3 treatments during the day. He does them back in his office, while we both work in separate rooms, so it doesn't affect my day, routine, plans, etc. The night treatment (which Ronnie always does right before bed) I notice more because I normally wait up for him to finish so that we can fall asleep together - maybe silly, but I just really love going to be together. I hate the thought of Ronnie crawling into bed and not having his wife say, "Goodnight" and "I love you" right before falling asleep. But all in all, on a typical day, treatments go unnoticed by me and they don't affect my daily life and routine.

But the reality of 3-4 treatments a day sets in when we're on vacation. And I will be honest, I am not the biggest fan of all the treatment time when we're on vacation. Often times we'll have to push off breakfast, come back mid-day regardless of what we're doing, or rearrange plans to make sure that we get all of the treatments in, while still getting out and enjoying vacation. I start to feel even more aggravated (maybe a harsh word, I can't find the right one. Annoyed? Perturbed?) when we're with other people (friends or family), and I feel like we're holding up the whole group because we have to get treatments in. And I'll be honest, I always feel a little guilty on vacation because I get annoyed with the treatment schedule, but then I realize that it is only my reality for a week, while it's Ronnie's reality every day. And that really puts into perspective that me feeling inconvenienced is silly and selfish.

ANNND now that I've let you into my horrible, inner-most thoughts, let me now give you the flip-side and what I constantly remind myself when these nasty little thoughts creep in. The rational side of me knows that the treatments are necessary...and maybe even more necessary because we're generally thrown off our workout routine as well - so we're not working his lungs with as much exercise either. And whenever the thoughts start to arise of, "Maybe he could just do 2 treatments today?" or "How about he just does 3 instead of 4?" I always step back and remind myself of one thing: I'd rather get home from vacation and have him healthy, than get an extra two hours a day of "fun," only to get home and have him feeling like crud; having to climb and uphill battle to get feeling good again.

I feel a little bad verbalizing my not-so-positive thoughts about treatments on vacation, but I know that I'm not alone in my thinking. Sticking to treatments during vacation (or anytime your routine is thrown off) is simply just not easy. But I always find that when I really step back and think about it, doing the treatments is far more awesome and beneficial than anything we could do with the two extra hours we'd have if Ronnie skipped his treatments. So this holiday weekend, Ronnie will be getting in all of his treatments, but you better believe we'll be packing the other 22 hours of the day with TONS of fun!!

Ahhhhh yes, treatments and vacation, my ultimate double edged sword...

So which side of the sword should I describe first? Let's go with the side that cuts some of my fun time out of vacations. Now, let's be clear, I'm the first to admit that I'm not Mr. Vacation and rarely am I the one chomping at the bit to go on one. We'll get to the reason I'm that way when we get back to the other side of the sword, but for now let's stick to the side that cuts me away from what I enjoy about vacations. Generally when I'm away and enjoying some other place I'm around family. That has to be the number one thing that I like about vacations. It's nice to be able to be around family 24/7 and the fact that you have the option to go out and "explore" with them is a bonus. One bummer about treatments and vacation is that it takes some of the spontaneity out of just "getting up and going". Things need to be more mapped out to make sure I have the time to get in my 3-4 treatments for the day. Whether it's 3 or 4 usually depends on the altitude, weather and how I handled the flight to where I was going. That's the thing with this CF life - there's really no "getting away" which is the biggest reason why most people want to go on a vacation in the first place.

Alright, enough of Debbie Downer. Since only about 7% of me feels the way I was talking about above, let me get to what the rest of the 93% of me thinks; the other side of the sword if you will. I love treatments on vacation because they feel like they restore some order or a sense of routine while away from home. I know that I've mentioned this before, but I am a routine guy. If my routine is thrown off, my whole day seems thrown off. It's especially that way if I miss my morning treatment - which probably happens 1 out of every 365 days. On the rare occasion that I do miss that first treatment, or heaven forbid, my coffee, you can pretty much count me "off" for the rest of the day. I usually like to go all out on vacation and pack in as much stuff as we can, so it's nice to have 3-4 times throughout the day that I can recharge my battery.

Another thing I think about while doing treatments on vacation is the more I consistently take care of myself, the better chance I will have to enjoy more vacations down the road with my family. Plus, being at the top of my game while on vacation gives me the energy to "keep up" with the rest of my family as they are doing the "vacation thing". I've always found that if I get out of whack with my treatments on vacation, not only do I not feel as good during the activities, but that it's hard to get back into rhythm when I get back home. You guys know how it works - one missed treatment leads to two, leads to 4, leads to a week, leads to a month. I don't know about you, but I can't afford to even miss 2 treatments in a row. I figure the longer I can keep up my treatment routine, the longer I'll have to feel good while on vacation. Does that all make sense?

Anyway, we thought it'd be fun to bring Sound Off Saturday back. Keep in mind that we just threw out a general topic to each other and then agreed to "sound off" on it. I have no clue what Mandi wrote and she has no clue what I wrote. The first time we read it will be the same time that you do.

Now it's your turn...sound off!!!

Sinus Surgery Won't Aid Lung Function in CF

NEW YORK (Reuters Health) Jun 28 - Endoscopic sinus surgery doesn't improve microbial pathogen load or pulmonary function in young cystic fibrosis (CF) patients, according to a retrospective medical record review.

"Prospective studies are needed to evaluate potentially short-lived effects of surgery on these variables, as well as to assess subjective or symptomatic improvements from a quality-of-life standpoint," Dr. Alexander J. Osborn of the University of Toronto and the Hospital for Sick Children and his colleagues conclude.

Treating inflammation of the upper airways can improve pulmonary function in asthma patients, Dr. Osborn and his colleagues note in the June Archives of Otolaryngology-Head and Neck Surgery. Nearly all CF patients suffer from rhinosinusitus, they add, and the severity of these symptoms has been tied to worse pulmonary function.

To investigate whether the unified airway model might hold true in CF as well asthma, and determine if treating sinusitis might improve pulmonary function, Dr. Osborn and his team reviewed medical records for pediatric CF patients who had undergone endoscopic sinus surgery in their practice.

The 41 patients in the study, whose average age was about 11, underwent 91 procedures in all, with a median of 2 per patient. The researchers excluded procedures performed within 2 years before or after another surgery, to ensure that preoperative values represented a patients' real baseline state. This left 56 procedures for analysis.

Using several different measures of pulmonary function, the researchers found no differences before and after surgery. And their analysis of the 62 procedures for which pre- and post-operative cultures were available showed no effect of sinus surgery on microbial pathogens.

Sinus surgery likely helps asthma patients' pulmonary function because the sinonasal area may be the sole source of inflammation in these patients' airways, Dr. Osborn and his team suggest. "In contrast, CF leads to chronic infection of both the sinuses and the lungs," they add. "Eliminating the inflammation or bacterial load in the sinuses still leaves a significant inflammatory source in the lungs."

The lack of improvement in pulmonary function and microbial colonization seen in the current study "does not obviate the need for surgery in these patients," the researchers add, pointing out that patients do see symptomatic improvement after the surgery.

"The lack of effect of endoscopic sinus surgery on pulmonary function test results and respiratory tract microbial pathogens in our study highlights the need for prospective assessments of postoperative quality-of-life improvement and of adjunct medical therapy efficacy," they conclude.

Original Post: Medscape Today

SOURCE: http://bit.ly/mJcgjY and http://ow.ly/5uhwr

Thankful Thursday: Hole-in-the-Wall

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. as I mentioned, I no longer have the "linkytools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for a hubby who surprises me with the best surprises ever. When I got home from small group on Tuesday night, Ronnie surprised me with a clean house. In just a few hours he dusted, scrubbed, swiffered, mopped, did laundry, you name it. It was incredible. I am so thankful for my hubby.

I'm thankful for family time. As you've read, my parents are in town. I am so thankful they could be here and we could all spend time together. Last night my parents, bro and sis-in-law and Ronnie and I went to dinner and had my dad help with some chores/to dos around the house that we needed some dad knowledge on. It was a blast.

I'm thankful for routine. While I'm thankful for my parents being in town, it has thrown off our routine a bit and I am feeling a bit out of whack and missing our daily and weekly routines. It reminds me why I am so thankful for a steady routine in my life on a regular basis.

Ronnie's List:

I'm thankful for Eazy-E. No, not the rapper, my father-in-law. There is one thing that Eric and I don't have in common (and believe me, we have more in common than he'd care to admit), he's been around grass his whole life and I have not. One thing that sold us on our house was the big expansive yard that came with it. Only problem was that I had exactly zero experience with a yard. My idea of landscaping was dirt, gravel and cactus. I wanted to learn how to maintain my yard because of how important it is to Mandi, and so far, I have about a C average. In the last couple of days, spots that are usually nice and green in my yard have become brownish and other spots just aren't coming in. Eric took a look, diagnosed the problem, and off to Home Depot we went. We came back with some fertilizer with bug preventer, grass seed and a hand held seed spreader. He also taught me how to "thatch" the grass which is something I only thought existed in movies :) Thanks Eazy, I'm hoping to see a lush lawn in a couple of weeks!!

I'm thankful for hole-in-the-walls. We were looking for a restaurant nearby that none of us had been to for a dinner spot tonight. So I used my trusty o' YELP app and searched out some places nearby with good ratings. We ended up picking a Korean place just north of downtown Chandler. The reviews were good, it was close and we were all feeling Korean food. From the outside, the place was a very typical hole-in-the-wall. Very nondescript, kinda dirty and nothing flashy whatsoever. It was a different story on the inside however - nicely decorated, very clean and best part, not a white person in sight. I know that has nothing to do with the actual look of the restaurant, but I happen to think it's a very good sign when their are nothing but Korean peeps eating at a Korean restaurant. My theory was proved to be right as the food was great and it even was awesome enough to please the oft traveled Eazy-E. Well done "hole-in-the-wall!!

So, what are you thankful for today?

Workout Wednesday: House Cleaning

Before I get to the house cleaning part of this blog, a little bit of an exercise update for ya...

I've been really hitting my stride in terms of working out lately. No, my foot isn't 100% yet, but it is bothering me less and less. Just in the past couple of days I've been able to go on a 4 mile hike, a 2.5 mile walk, a 2.4 mile bike ride and a 45 minute spin class. I was a little worried that all of the variety of workouts was going to tweak my foot a bit, but so far, so good.

My foot is finally to the point where I feel comfortable being on it multiple times a day and therefore have been able to re-implement my morning walk/bike ride. It's really stunk not being able to get up and go first thing in the morning, but I really wanted to give my foot it's best chance to heal. I've really been missing my morning walks for the most part because of how much I believe in them. I feel SO MUCH better on the days that I do something first thing in the morning. I don't know whether it's because I "jump start" my body or because I cough up a gallon of mucus, but whatever it is, it works! If you're looking to start some type of exercise routine, I would HIGHLY suggest starting out with a morning walk. I know that I am so thankful that mine can resume.

I had another spin class today and yet it again, it kicked my booty. Every time we go back I try to push it a little bit more than the last time. What's cool is I'm able to keep up with the instructor much better than before and don't feel like I'm going to puke for the entire time. Now I'm down to feeling like I'm going to barf for only half of the class...small victories. This is another workout I would highly recommend. It's low impact. You have a motivator in front of you the entire time. And you can go at your own pace. I promise you that it will get you sweating a ton and breathing really heavy.

And finally, my most surprising workout of the day, cleaning the house. Mandi hung out with some of her girlfriends tonight so I wanted to surprise her with a clean house when she got back. Between getting home from the gym and handling some work issues, that didn't give me much time to get it done. In all, I dusted, unloaded and loaded the dishwasher, cleaned the toilet, Swiffered the entire house twice, mopped the entire house and did the laundry. Let me tell you, I had to break out my sweat rag from the spin class to wipe off the liquid pouring from my forehead. So here's the deal, if you think working out isn't for you, start with this. Write out a list of all the household chores you will do and an amount of time you plan on having them done by. Time yourself and see if you can meet your goal. If you do, lower the time the next time that you're doing those same chores. Maybe it's because I'm out of shape or maybe it's because it works, but all I know is that cleaning the house makes me sweat up a storm!

Top Ten Great Things About This Weekend

This past weekend we had a bunch of good stuff happen to us. So much stuff in fact that I figured I would put it all down in a list of the top ten cool things about this weekend. These are in no particular order except for the last one - it's definitely #1 on the list:

Grilled pineapple with cinnamon and sugar - Nancy (mom-in-law) made some excellent side dishes to our dinner on Friday night. I don't know how she managed to pull it off, but after flying for 24 hours, she still had the energy to whip up dinner. That woman has some serious skills in the kitchen, and the grilled pineapple did nothing but bolster my opinion.

People watching at Starbucks - I like people watching period. People watching with Eric (pop-in-law) just brings it to a whole new level. His comments are entertaining and it's always a pleasure to join him at one of his favorite spots back in the states - good ol' Starbuckaroo's.

Breakfast at the Post Office - Before church on Sunday we all went to one of my favorite breakfast spots in Scottsdale. It's called the Post Office and pretty much everything they make is good. I got a create your own omelet with one of my favorite combinations: ham, american cheese, tomatoes, spinach and green chilies. Mmmmmm, mouth is water just thinking about it. As a bonus, we were a couple of tables away from Jared Allen, defensive end for the Minnesota Vikings. Big dude.

Movie watching - I love sitting down and watching movies. I actually prefer to watch movies at home rather than go to the theaters. Not only is it cheaper, but I can stretch out as I please and pause when necessary. We ended up getting a very "manly" movie which, cussing aside, was pretty good. And by good of course I mean entertaining. Just a lot of fight scenes, shootings and things blowing up. What's not to like?

Pool lounging - I've never claimed to be a "sit in the sun and fry" kind of a guy, but hanging out in the pool is one of my favorites. We always end up coming up with whacky games or challenges that make it even more enjoyable. This time it was seeing who could throw a ball across the pool and make it land (and stay) on a raft as well as going back and forth across the pool without swimming and only pushing ourselves off against the wall. I guess you had to be there :)

Watching Nancy adjust to the new timezone - So you can probably imagine that it may be a bit tough adjusting to a country that is 15 hours behind the country that you just left. One of my favorite things about the in-laws being back in the states is watching Nancy fight to keep normal wake and sleeping hours. Sometimes she adjusts rather "quickly" and sometimes she doesn't adjust at all. You can bet your bottom dollar however that you will catch her napping on the couch every single day at various times. Maybe we should start making bets?

Picking the folks up at the airport - It's always very exciting seeing Eric and Nancy for the first time in a long time. Granted, Mandi and her mom webcam almost every single day, but it's obviously just not the same. Seeing the smile on my wife's face as her parents make their way to our truck is a particularly special moment for me.

Coming home to a painted house - I know that Mandi touched on this yesterday, but I have to reiterate how good it feels to come home to a painted house. It's amazing how a single coat of paint can seemingly transform a room. We know have every single room in our entire house painted to our satisfaction with the exception of our master bathroom toilet room. Now that the painting is done, here comes the fun part: Mandi coming home with furniture to fill the newly painted rooms. First up, the nursery.

Hiking - We all set out on a hike Saturday morning to the mountain where Mandi and I got engaged. The entire loop is 4 miles and Mandi and I did 3 miles of it. Eric and Nancy were considerably faster on the way up and we didn't want to make them wait for us to make it to the top, so we stopped at the second check point. I'm proud to report however that I hiked all 1.2 miles to the first check point without ever stopping - that's the first time that has ever happened.

Time with Family - Do I really need to say anything else about this?

Best Feeling Ever...

"What is?" You're probably thinking after reading the title. But unfortunately you will have to bare with me a bit before I get to that...

As some of you may have read in a few posts recently, my parents are in town (WAHOO). We picked them up from the airport on Friday afternoon, and spent the weekend with them, and Josh and Chrissy (bro and sis-in-law) up at my parent's house. It sure is great having them in town! Friday late afternoon we hung out in their pool and then grilled steaks for dinner. Saturday, Ronnie, my parents, and I hiked a mountain near their house (you've maybe seen pictures from the top of it...it's where Ronnie proposed to me!), then we all went to hang out at Starbucks for a bit (my parent's favorite weekend morning tradition - they love the people watching!). After Starbucks we headed back home and spent the day in the pool, watching TV, eating far too much junk food and brought some Thai food in for dinner. Saturday was one of those days were you're actually tired at the end of it, but from doing nothing at all. It was awesome. We always have fun floating and playing in the pool together - making up pointless games to occupy our time, reading magazines, catching up on life, and busting each other's chops. Sunday was much of the same. We went to breakfast and church in the morning, came home, and hung out in the pool some more, watched a movie, and brought pizza in for dinner.

It is so fabulous having them in town. I am just happy to know that the fun does not stop this weekend...they'll be here for another couple of weeks! YIPPEEEE!! But the weekend did have to come to an end, and Ronnie and I headed back down to our house Sunday night, to get a good night's sleep in our own bed and start Monday morning bright-eyed and bushy-tailed for work. Unfortunately, we aren't taking the week off, even though they're here, so we had to get back to our house so we could maintain somewhat of a routine. So anywhoo, as I was saying, Sunday night we headed to our house, and before unloading the car, came inside to check out the painting. "Huh?" You're probably thinking. You read that right, while we were gone for the weekend "vacationing", painters were here painting!! BEST.FEELING.EVER!!! I can't tell you how amazing it felt to come home to chores done, that I didn't do! I do feel a little guilty that we had painters come and paid them to do a job that we could have done. But painting makes Ronnie's lungs tight, and I figured I probably shouldn't be painting several rooms (we're playing musical rooms to get the nursery in the room we want it) while pregnant. So we had painters come and paint those two rooms, and while they were at it, paint the 2 bathrooms associated with those rooms AND paint the laundry room. So while I still feel a little guilty, seeing an almost fully painted house after a weekend of NOT painting is super exciting!

So there you have it...the best feeling ever revealed :)

Thankful Thursday - DWill & DD

Know what time it is? It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. as I mentioned, I no longer have the "linkytools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for spin class. As Ronnie mentioned yesterday, last week we started doing a spin class...and we LOVE it. I was beginning to get a little bored doing 30-60 minutes of cardio a day, of the same thing, over and over and over. So I looked into other classes at the gym (I was already doing step on Fridays, but wanted something on the other days). I thought spin could be something fun Ronnie and I could do together, so we gave it a shot and it was a blast. It's our new Tuesday/Thursday cardio in the afternoons...and man am I thankful for it!

I'm thankful for Dunkin' Donuts egg and cheese sandwiches. We got DD yesterday morning on the way down to Tucson (I had meetings so we headed down nice and early). And man, every time I have an egg and cheese sandwich on a cinnamon bagel I am oh so thankful for their existence. Unfortunately they pack about 450-500 calories and your daily sodium limit, so they're not an everyday option, but MM MM MMMMM!

I'm thankful for AC. It is really heating up in AZ these last few weeks, and I have to say, life without air conditioning would be miserable. Typically Ronnie fights me on the temperature of the house - refusing to turn on the air until the house is over 85 degrees. But this summer, thanks to peanut, he's turning on the air...and actually keeping the house around 79 or 80 degrees!! WAHOO...thank you pregnancy and thank you sensitive hubby!

Ronnie's List:

I'm thankful for my in-laws pool. It's definitely been heating up for the past couple of weeks, but we were able to escape the heat a bit this weekend by diving in a vat of water. There aren't many feeling that can beat diving head first into a pool on a hot summer's day. We did just that this past weekend with friends and family and had an absolute blast playing pool games. Now that I'm talking about it, I may have to go back for more in a couple of days!

I'm not only thankful for their pool, but I'm also thankful that I'll be able to hang out with my in-laws as they are making their way into town on Friday. It's been a handful of months since we've seen them last and we can't wait to love up on them for the couple of weeks that they're around. It's the times that they're around that I wish China was closer.

I'm thankful for the joy I'll experience tonight while watching the NBA draft. For those that don't know, I'm a die hard U of A basketball fan, and one of our players is expected to be picked in the top 5 of tonight's draft. We haven't had a top 5 pick since I believe the 1998 draft, so this is certainly an exciting time for Wildcat fans. I just can't wait to see the look on D-Will's face as he makes his way across the stage. He deserves every second of it.

So, what are you thankful for today?

Ever try a spin class?

I wanted to give you guys an update on how my workouts are going since I haven't been posting as much exercise related stuff lately. As many of you know, I hurt my foot a while back during a run and have been trying to rehab it now for the past eight weeks or so. My foot is definitely getting better, I'm just not to the point of really pushing it on a daily basis yet. I've backed off of my morning walks to try to rest my foot and I've only gone on two runs in this eight week period. that certainly doesn't mean that I've been slacking off on working out however. I'm still doing something active every single day whether it's riding a bike outside, an exercise bike in the gym, the elliptical machine, lifting weights or walking on a treadmill - I'm still keeping myself very active. Which leads me to the other point of this blog - have you guys ever tried a spin class?

Last week Mandi floated out the idea that we try a spinning class together. It made sense to me since there isn't any pounding on my foot and we would be able to do cardio together. We haven't been able to do our cardio together for quite some time because of my bum foot. Mandi has been religiously running every morning while my lazy butt stays at home. Once in a while we'll walk side by side on a treadmill, but she generally wants to do something different since she already has a morning run in. She's not a fan of exercise bikes so when I would hop on one of those she would often do the stair stepper. So anyways, the thought of doing some cardio with my wife was very appealing.

To spinning...I've noticed the loud music coming from the spin classroom before and was always intrigued by it. People seem to be enjoying themselves and the class is always packed so I deduced that something was going right in there :) I also remember a time about 10 years ago when spinning seemed to be all the rage. I never tried it however, but always wanted to. Last Thursday we gave it a go. Some of you may have seen my update on last week's spin class already but for those who didn't, it went a little something like this, “I felt like I was going to throw up for 42 minute of the 45 minute spin class.” Doesn't that sound appealing? Your first thought is probably no, but I'd like to encourage you to give it a try if you are at all inclined. What's nice about a spin class is you control your own speed and effort, but you also have a "coach" yelling at you, or should I say the entire class, to get it in gear. I generally respond very well to coaching so this kind of a thing is right up my alley.

At today's class I was sweating during the 3 minute “warm up” period. Today's instructor was all about climbing those hills and my legs were paying for it. I will say though, what's nice about spin class is that it's based music. It really helps you keep a rhythm and you always kind of know when your next break is coming. It's important to point out that it's not 45 minutes of all-out peddling, but a constant back and forth between taking it “easy” and going all out. I can tell you this for sure, if I can do it, you can do it. I'm already looking forward to my next class and I hope that I can push myself even more than I did today.

So the question is, do you spin?

Genotype vs. Gene Mutation

Fortunately, most of the readers that can be found commenting on these blogs are much smarter than I am. A couple of weeks back I posted a blog answering a momma's questions about gene mutations and the severity of the disease linked to them which can be found here. A very intelligent reader by the name of Jessica left me a very well written comment that may have straightened out some of the points in my blog even better than I could. Thank you Jessica for taking the time to respond to the blog with such a thoughtful and educated comment. We learn something new every day, I know I did:

There are actually six classes of mutations, and they don't directly range from 1-6 in "severity". Also, they don't indicate severity so much as the manner in which the CFTR protein and/or transport is faulty - a cellular issue that has not been proven to be affected by patient behaviors. There's a lot of great information with more detail and specifics in this article on the CFF website.

Taking care of yourself - treatments, exercise, nutrition, etc, are all still extremely important to put yourself in the best position for optimum health, but none currently available have any direct impact on the cellular-level mutation problem itself - that's exactly where these new treatments come in and why they're so exciting!

Lastly, a quick but important distinction: DeltaF508 is the most commonly identified mutation, but *double* DeltaF508 is a genotype, *not* a mutation. Everyone has two mutations, which are often not the same; the genotype identifies the pair, and their interaction with one another (which is arguably equally if not more important than the mutations individually). DF508 is the most *commonly identified*mutation, but DDF508 is not necessarily the most common *genotype*, and if it is, it's by a slim margin - it's not like there is a vast majority of double deltas and other genotypes are sort of "odd type out" in CF statistics.

Also, while that DF508 is the most commonly *identified* mutation , many scientists argue that may just as well be because it was the *first* identified mutation, and as more mutations are identified AND more individuals learn their genotype, that will likely change, as it doesn't make sense that DF508 would be the most common from an evolutionary biology standpoint.

The most important reason to know your (or your child's) genotype is because the new wave of treatments are all going to be rather class specific, if not mutation specific - knowing BOTH of your mutations lets you know whether new trials apply to you (so you can participate and get them to market quicker!) and if they don't, whether the science might be in the same wheelhouse and therefore might eventually - or at least more quickly than a treatment targeting a mutation in a completely different class.

Hope that helps clarify some things!

When Momma's Happy...

This year, Father's Day around our household was like any other day. While Ronnie is very much a daddy as this point, he was very adamant that we didn't celebrate Mother's and Father's Day to their full potential until Peanut is here in our arms. However, I must say, I spent a good part of the day envisioning next year's Father's Day and how wonderful a daddy Ronnie will be to our little Peanut!

So all that said, yesterday was just an average Sunday; church, lounging, laundry. But I thought I'd share our little something special from the day...and that is pregnancy craving dinner! I started dreaming about dinner around, oh say, 5pm ish - well before dinner time, but about the time I start getting hungry and have to tell myself, "just a few more hours." Knowing that we didn't have much around the house (probably should have gone to the store and done a major shopping trip way earlier in the day, but oh well), I start browsing the internet to see what crazy concoction I could scrounge together. The problem was, I was feeling like dessert. I wanted something sweet. I didn't really want dinner. And then Ronnie said something that was music to my ears, "I want breakfast for dinner." "Bingo," I thought. Breakfast can be something sweet! So I start searching for a creative breakfast-dinner idea, and that is when I first laid eyes on it. A recipe that was fit for a pregnant lady, craving something dessert, but needing to disguise it as a dinner. Peanut butter and banana stuffed french toast. It was the perfect combo. Breakfast - check. Sweet - check. Protein and fruit to nourish peanut - check.

So here you have it. The tastiest breakfast-dinner around...with protein and fruit to justify it as nourishment!

Gather simple ingredients: bread (we used cinnamon raisin), PB, honey, bananas, eggs, powdered sugar, cinnamon, nutmeg, salt, vanilla, milk (not pictured), jelly (we didn't end up using it and instead used maple syrup)

Spread PB on each piece of bread. Then cut up banana and put it on 1/2 the slices, and drizzle honey on the other half.

Put a banana side with a honey side to make "sandwiches"

Dunk both sides of each "sandwich" in a mixture of the spices, eggs, milk, and vanilla and throw it in a pan to cook over medium heat.

Put powdered sugar and syrup on top and ENJOY!!!

Hope everyone else had a lovely Father's Day...if you're looking to drag on the celebration, I recommend doing it with breakfast-dinner PB and Banana Stuffed Cinnamon Raisin French Toast.

Happy Father's Day to some of the best guys around: Dad, Mark and Eazy

Apartment Hunting

My two brothers came up from Tucson last night to complete one mission, and one mission only this weekend: Find an apartment for Andrew. Andrew is my 21 year old (single, ladies) brother who will be attending ASU in the fall in pursuit of a Masters in Family and Marriage Counseling. I'm so excited to have him up here in Phoenix and am counting down the days until my little brother Grant can join him! It will be a while for Grant however as he will be going into his sophomore year at THE U of A in pursuit of a degree in Civil Engineering (I have no idea what that is either).

So, if you're in the Tempe area or live next to the light-rail, leave me a comment on some suggestions on where Andrew can live. We'll be doing some hunting on our own this weekend, but suggestions are always welcomed!

Thanks guys.

Thankful Thursday - Water & The Garbage Man

Know what time it is? It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. as I mentioned, I no longer have the "linkytools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for movement. My little wiggle worm moves ALL over the place these days, and I have to say it's the best part about being pregnant!! I am being kicked and bumped all day long, and sometimes I can even feel peanut do a full flip - makes me feel motion-sick! I love every part of it and I can't get enough. Sometimes I'll just sit and stare at my belly for a solid 10 minutes, just watching all the "pops" on my tummy. I am so thankful for this little life inside of me.

I'm thankful for my garbage man. No my ACTUAL garbage man, I'm talking about my hubby. Ever since we got married and moved in together, Ronnie has taken out the trash and recycling. I couldn't even tell you what day is trash day and what day is recycling! The only way I know it's trash day is that the night before around 10PM I hear Ronnie's phone reminder go off. He does so much around the house, I don't know how ladies do it without a helpful husband. Ronnie definitely gets a GREAT HUSBAND award!

I'm thankful for my maternity support belt. I read about it on a pregnant runner's blog a couple of months ago, and decided to order one, but hadn't used it until today. The last few days I've had some cramping while running and walking - and not uterus cramping, but moreso all around it (my thinking was that it was round ligament pain). So I broke out the belt this morning for my run, and boom, good as new!! My little monkey likes to push as far out on my belly as possible (we're talking strange, lop-sided lumps she's leaning so hard against me), and it made walking and running a little uncomfortable from time to time. This belt helps hold things tight, so if she is using the front of my uterus as a lounger, I at least don't feel it AND the round ligament pain is gone.

Ronnie's List:

I'm thankful for water. A couple of days ago I wasn't feeling so hot and decided that I needed to step up my water intake. I'm always good a drinking two cups of water, ahem, with coffee in it, but rarely do I have glasses of water throughout the day. I usually have a sports drink or two mixed in with some water here or there. Well, for the past three days I have been going water crazy drinking about 128 ounces of the stuff a day. May be just coincidence or my mind playing tricks on me, but I feel so much better!

I'm thankful for the A/C. First thing you've got to know is that Mandi calls me the A/C nazi. I always say, "If you're cold put on more clothes and if your hot, take them off!". Since my wife has become pregnant I've become a little more relaxed on my A/C policy though. We haven't needed it much until this last week thankfully, but I'll tell you what, it's hot. It's about 84 degrees in our house by 8 in the morning. We're still trying not to run it all of the time, but we have been running it more than last year. I'll admit, it feels pretty nice :)

I'm thankful for weight lifting. Mandi and I have gotten back into our weight lifting routine lately and it feels really good. We've never let up on our cardio, but hitting the old weights got put on the shelf for a couple of months. We've been doing cardio about 5 days a week and lifting at least 3. It was a little rough at first, but it's getting easier and easier as we get into our groove. I'll tell you what, for a 20 week pregnant woman, Mandi is looking buff!!

So, what are you thankful for today?

That Little Piece of Regret

Earlier on today while walking towards the fridge to get my second dose of Cayston I yelled out to Mandi “well I guess I might as well do another treatment!”. Then, for some strange reason, I thought to myself, "Man, will I be doing treatments for 2 to 3 hours a day for the rest of my life?". What came next was actually kind of strange and to be honest, kind of surprised me. Immediately after the statement I had just internally made, I thought to myself, “I sure wish I would have started doing more treatments earlier on in life”.

So that brings me to my question for those of you reading this - do you wish you would have been on the compliance bandwagon earlier? Or let me put it another way for those of you who have always done treatments - Do you ever look back and wish you hadn't done so many? I would of course hypothesize that there is not a single CFer out there who regrets being compliant, but I recognize that this hypothesis is really just a shot in the dark. Just as I tell people that you'll never regret a work out, I would like to think I could tell people that you'll never regret a treatment. I wish I could say that I was one who never missed a treatment, but I can't and therefore that little piece of regret is still with me.

The key in this however is that I'm not filled with the kind of regret that weighs me down. Do I regret not doing more treatments when I was younger? Absolutely! Do I allow that regret to stunt my progress going forward? No way! I completely realize that there is no turning back the clock and getting back to a point where I can somehow re-do my treatments. I can however from this point on hold that small piece of regret in my mind for the sole purpose of motivating me to make better decisions regarding my health going forward. Fortunately for me, when I did step up my treatment regimen, I was able to “turn back the clock” so to speak. I was able to return my lung function to a place that it hadn't been since 2003. I was able to do things physically that I hadn't been able to do with such energy for quite some time. There is of course a part of me that says, “imagine if you would have had this commitment when you moved out of your parents house” or “imagine if you was spent less time 'doing the college thing' and more time taking care of yourself”. Would things really be different? Who knows, but I guarantee it wouldn't have been detrimental to my health to be more compliant in my past.

So what's the point of his blog anyway? There really is no point, I just thought I would share some of the thoughts I was having today.

Maybe you're at that point right now where you have some decisions to make regarding your health. Maybe you're about to ship off to college and for the first time in your life your health is completely in your hands. Maybe instead of getting out of the house right now to hang with your friends you can do treatment and catch up with them 30 minutes later. Who knows what this blog will do, but if it can help some fibro or cyster out there to avoid that little piece of regret, it would be completely worth writing.

How Are You So Positive All of the Time?

I had a great question asked to me by a momma over on CysticLife, but asked her if I could write a blog about it since I knew my answer would be a long one. What's funny is that I actually get this question asked to me quite often. Sometimes it doesn't start with a "how" but rather a "why"(in sort of a disbelief type of a tone), which would of course have some different answers. I figure though that if one of my flaws continues to be that I'm "too positive" then I must be doing something right. Anyway, here's the question:

Ronnie, I am amazed at your attitude and I admit, a little curious. What's your secret? What drives you to be so positive? I feel that somehow maybe I failed my son. I set out 20 years ago when he was diagnosed to have him be the same way in life but he has struggled with anger more than I would like to admit. Myself too, as a result of watching him struggle. He's getting better though. I'd love to hear your thoughts.

Wow, what a great question. First, I think it's important to note that there is no “secret” that I have found to being a positive person. But before I even get into that I need to tell you something flat out: you have not failed your son! The only time we fail in this life is when we quit or we stop trying. Just the fact that you are reaching out and seeking the advice of others shows me that you have not quit, so believe me, you are not a failure. The problem with pinning our positive or negative attitude completely on our upbringing or on what our parents model to us obviously has some flaws. I can recall countless positive friends who had some of the most negative and pessimistic parents around as well as pessimistic friends who had some of the most happy parents in the world. Now, that's not to say that a positive role model and good modeling doesn't often put us at an advantage to carry on that attitude, but it certainly isn't the be-all end-all. However, since you did ask me for my take on it I can certainly try to pin down a few of the reasons that I'm so positive.

**For those of you about to read this again please remember that this is my experience and may or may not fit your experience.

1. My faith in God. This is a perfect example of the shoe not fitting everyone the same way. I've known plenty of Christians who were negative and rarely have a “glass is half full” mentality. For me however, being a Christ follower has translated my entire life into knowing that God was in full and complete control. And since He has already written out my story, I'm also convinced that having a negative attitude isn't going to change the ending or any part of the story in fact. When life feels overwhelming or a situation seems too much to bear its often introspection that shows me I'm trying to deal with it on my own. God makes it very clear that because of the relationship I have with Him, I'm not to feel alone with my burdens or bad situations. He calls on me to lean on Him in times of trouble and the great part is, He is never busy. I try to wake up each and every day and fulfill whatever Will He has for my life. I'm sure I've failed more than succeeded but I have faith that God will never leave my side and He'll give me peace that surpasses all understanding each and every time I ask for it.

2. None of my problems have ever been solved through anger or a bad attitude. I've always told people that I'll start complaining the second that somebody shows me concrete evidence that it will change my situation. It doesn't matter how much I complain, CF isn't going anywhere. I can complain until I'm blue in the face, yet I'll still have to do 2 to 3 hours of treatments tomorrow. I can shake my fist at God for having to go into the hospital nearly 3 months out of every year, but when the time comes for a tuneup, I'll be heading right back into the Hole. Instead of identifying all that is “wrong” in my life I choose to instead highlight everything that is right. I have a beautiful wife both inside and out. I have a family that will support me through thick and thin. So far I've woken up for 11,480 days and been able to breathe and put two feet on the ground. I'm part of a community that has shown incredible love and interest in my life. I've been able to travel. I received a good education. The point is, I have stuff in my life that other people around the world will never have access to. I've been blessed beyond measure to actually live in a country that has top-notch CF care. I don't complain that I have to do treatments, I thank God that I'm able to get all of my meds and throw on a vest. I think often times it's just a matter of taking a step back and counting all the things in our life which is right.

3. My mom. My mom will be the first one to tell you that she's not the most positive person in the world. She won't always look at you and tell you how great things are. There is one thing however that she is, and that's a realist. Not a realist in the sense that I grew up hearing about all of the death and destruction that CF could cause, but a realist in the sense that there were things I could take ownership of and if I didn't, it fell on nobody else's shoulders but mine. If I complained about not feeling well my mom's response wouldn't be “that damn CF” it would be "how many treatments did you miss last week?". When I ended up having respiratory arrest during the halftime of a football game I was playing in my mom didn't say “you need to stop playing because CF can't be controlled”, she said “what can we do to make sure this doesn't happen again?”. Here's the deal, she recognized that there are things that will simply be out of our control, but she didn't dwell on them. She never made the case that if I did XYZ I would be free from all of the manifestations of CF. She did however encourage me to make sure I was doing everything possible to put myself in the best position to succeed. I think the best way to illustrate how she raised me would be through this picture: complaining about CF and refusing to do treatments is like complaining about an overflowing bathtub and not turning off the water. Does that make sense?

So I could probably go on and on about the subject, but this seems like a pretty natural place to end this blog. Ending it here also gives me a chance to come up with some more bullet points. Hopefully I did a decent job explaining some of the reasons that I may tend to be more positive than negative and I invite anybody reading this to share any reasons they feel that they have a positive attitude.

Half-way There

Welp, this is it. This is the week I've been waiting for since hearing the words, "you're pregnant." It's week 20. Week 20 means we're half way through this pregnancy and, better yet, half way to holding our precious little baby in our arms. As you can tell, I've been counting down the weeks until I could say we were half way there. When I really think about it, it's a little silly that I put so much stake on the 20 week mark...considering that means I still have 20 weeks left, which is kind of a long time. Regardless, I'm thrilled.

So here are a few tid-bits on momma. My belly is starting to show, although it's still pretty tiny. I'm hoping that means I'll stay on the smaller side throughout the pregnancy, but I think I will likely be small, small, small, and then BOOM, blow up. We shall see. My weight is climbing far faster than peanut's, with a grand total of 10 lbs (gulp...I promised I'd share, but that may change as I grow ;-) !!) My acne is getting better, but it's still not great. I think it's going to be with me until peanut is born, but I've accepted it at this point. It's been a good lesson in vanity and accepting that which I cannot change.

As many of you read, we had an ultrasound last weekend and found out that we're having a little girl (high fives and big smiles). We are totally thrilled at the idea of having a baby girl, although we've decided to hold our excitement back a tiny bit until we have another scan at 28 weeks to confirm that it is in fact a little girl. It may sound silly, but I've seen way too many stories online of parents being told "girl" only to be told "boy" a few weeks or scans later. So Ronnie and I still call peanut, "peanut" but we do slip in "she" and "her" pretty frequently.

And for that reason, we're still holding off on buying adorable headbands and tutus for another several weeks. But my mom is going to be in town in two weeks, and as some of you may remember reading in previous posts, my mom is like Martha Stewart. Anywhoo, she's only here for a few weeks, and she probably won't be back until it's baby time, so I don't want to miss my chance getting her great insight...plus, this is the stuff that moms and daughters are supposed to do together. Therefore, we're starting to think about the nursery, and are going to make all the big items neutral, and then just add gender-specific touches (ie furniture, bedding neutral; pillows, wall decor gender-specific). I think the nursery is just as much for mom and dad as it is for baby...since parents spend a lot of time in there. So we're making it a space that feels really relaxing and calming (this stress ball needs relaxing and calming). So below are two pictures of my nursery inspiration...I'd love to hear your thoughts!

Challenge from Chronic Admissions!

Nancy over at Chronic Admissions posted an awesome blog with a mind blowing stat and great challenge that I wanted to share.

Make sure to stop by her blog and tell her whether or not your up for the challenge:

It's Friday! and it's 76 and sunny. It's the perfect day to open all of the windows and let in the fresh spring air... especially after all of the humidity we've been having here in the Northeast. Even better would be to make this day an outdoor day. Take the kids outside for a nice game of tag or wiffleball or for a long bike ride. Not only will it bring you closer as a family (and tucker those kids right out), but it can save your life.

The American College of Cardiology released the results of a study finding that sitting for 6 hours or more a day is as deadly as smoking. Yup, smoking! So for all of you sitting at your desk reading this, GET UP. Women are 37% more likely to die sooner compared to those who sit for 3 hours or less a day. Men have a 17% greater risk of early death. You may think that this is completely out of your power if you have to work. But if you take breaks to stretch or if you do some of your work while walking on a treadmill, you will be making improvements. Sitting too much can cause heart disease, obesity, diabetes, cancer, and early death.

I don't know about you, but I'd like to avoid each of those things. I already have a few issues with my heart, but like my cardiologist said, one of my problems disappeared when I was picking up the pace on the treadmill. So, I ask you again - especially you CF parents or those of you with CF - join me on my new mission to improve my lungs, my heart and my overall health. I'm doing it for me and my girls. What about you?

It's a Girl!!! (and 3D-4D pics are crazy awesome)

So Peanut's been a little modest with us for the last couple of ultrasounds so we thought we'd try to get an even better view and made an appointment with a place that could do 3D-4D shots. Unfortunately, we still weren't able to get a clear "4D" shot of the goods, but now two separate ultrasound techs have told us they are 99.9% positive that we're having a little girl :)

We are so excited it's crazy!! We were of course happy to have either a girl or a boy, but just knowing for sure what we're cooking is nice. Now, I will say, we're going to hold off a bit on any purchases until we have another confirmation ultrasound in about 9 weeks and the reasons are two fold - still no absolute money shot and the biggest reason, we've read on too many message boards about couples being told that they were having a little girl at 19 weeks only to birth a boy 20 weeks later :) I mean, the techs did say 99.9% right?

The best news was that our lil' Peanut passed the anatomy scan with flying colors. She's growing right on target and all of her internal organs are looking fabulous.

Enjoy the pics and we'll of course post more pics as we get them (you can also be on the look out for a video as well)...

Thankful Thursday - Snorkeling and My Rock

Know what time it is? It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. as I mentioned, I no longer have the "linkytools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for a healthy little baby. Our 19-week scan yesterday went well and peanut is measuring just right, has all his organs (that they can see) and has an adorable little face! I am so very thankful to have a growing, flourishing little baby, and I hope he/she continues to develop just the way God has planned. Who knows if God has a little boy or a little girl in store for us...hopefully we'll find out today...but whatever peanut is will be just right!

I'm thankful for a great long weekend with family. The annual trip each year to Rocky Point, Mexico with Ronnie's entire extended family (about 40 in total) is always a blast. This year was no different. I am so thankful for such a wonderful family and such wonderful memories that are created each year. There is nothing like fun, sun and relaxation with an incredible family.

I'm SO very thankful that my hubby is always a rock and a voice of reason. We've had a few little hiccups the last few days (well, WE haven't had the hiccups, but this pregnant, overly emotional stress ball has) and Ronnie has calmed my anxious mind, been the voice of reason, and best of all, snuggled me when his wise words went in one ear and out the other...mannn, gotta love pregnancy hormones in an already emotional and high-strung woman (poor Ronnie!)

I'm thankful for my God. When I need something, anything, and I cry out to my God, I often wonder how people do it when they have no faith, no nada to cry out to. I'm glad I have someone bigger than me, and an even bigger and better rock than my incredible hubby. I'm not sure where we'd be without the faith we have!

Ronnie's List:

I'm so thankful that everything looked good on lil' Peanut's ultrasound yesterday! S/he has a great looking brain, heart, spine, bladder, kidneys, fingers, toes, hands, legs, feet and everything else. The lil' bugger is still being shy however and not giving us a clear shot of his/her genitalia so we're still wondering what the sex is. We have a 3D scan today, so we're very hopeful that we'll get some definite gender answers!

I'm thankful for the safe trip to and from Mexico for the whole family this past weekend. Every year about 35-40 of us head down to Rocky Point, Mexico for our annual "family reunion". Other than the occasional flat tire or speeding ticket, we've managed to go to and from without a hitch. This year was no different and I'm thankful that despite all of the warnings coming from our government about our friends to the south, we made it in and out safe and sound.

I'm thankful that I was able to experience God's wonderful underwater creation. Mandi and I had the chance to snorkel this weekend and it was absolutely wonderful. I hadn't been snorkeling since I was about 9, so I was eager to go again although I didn't really know what to expect (but quite honestly, my expectations were low). I was pleasantly surprised. I saw a ton of fish, sea urchins, corral and other cool stuff that I would have never seen had I not stuck my head under water. God is good and His creation is magnificent.

So, what are you thankful for today?

Thrown for a Loop

Sorry about the lack of postage guys. No, not stamps, but my inability to throw up some good blogs while I was on vacation. I of course had planned to write some sweet blogs to automatically post while we were gone, but that obviously didn't happen. FAIL. One BIG issue with being such a routine kind of a guy is that when my routine gets thrown off, everything else suffers as well. I hate that those who actually look forward to reading these things every day faithfully checked in only to find a big fat nada. To the four of you who actually come to this blog daily and enjoy reading the garble that I put on "paper" - I sincerely apologize and I promise to try and be better the next time my routine gets thrown for a loop.

I guess the best thing to do to get back on track is just to catch you guys up on what's been going on...

- Every single year my family goes to Rocky Point, Mexico for what I like to call the annual family reunion. Now, I'm not sure if you can call it a reunion since 90% of us see each other at least once a month, but saying "reunion" just makes it seem more official. The family has been going down there every year for the last 32 years. This year there were 42 of us, so when I say family, I mean BIG FAMILY. We actually had to rent two houses this year because we had a few additions due to my cousins wedding. Her and her now husband Matt have been dating for over 10 years and finally decided to "take the plunge" and tie the knot. It was nice having some of Matt's family there and also some cousins that usually can't make the trip were there because of the wedding. As always, it was a great time down in Mexico!

- Even though I was thrown from my routine, I still managed to get three treatments in every day I was there but one. The day that I only got two treatments in was the day we had a trip away from the house for a snorkeling adventure. Swimming around the ocean and breathing through that little tube actually proved to be a pretty good treatment based on the mucus I fed some fish with (eww, I know). Actually, it was pretty funny when Mandi first put on her snorkeling gear - she put on her mask and stuck the breathy thing in her mouth, took one breath and said, "Whoa, I feel like you". Hahaha, I love her.

- One thing we did manage to get on the blog was a poll about Peanut's sex. We still don't know whether we're having a boy or a girl, but we wanted to get your guy's take on it based on everything you've seen or just your gut feeling. We actually get the official results today, but it's not too late to vote. You can find the poll in the top left hand corner of this page. Go ahead and take a stab at it. As of the time I'm writing this, girl has the lead with 60% of the vote.

Well, just a little catch up blog for you guys. If you have any questions about anything, please don't hesitate to ask and tune back in tomorrow to see what sex Peanut is. Thanks for bearing with me while I was out of the loop!!

Boy or Girl? Take the Poll!

We thought it would be fun to see what sex you guys think little peanut is by having you take a poll. We have tried our best to find out using stuff like "the ring test" and early ultrasounds, but so far, the results are inconclusive. So what do you think, boy or girl?

You can take the poll on the left side of this blog. Thanks guys!!

**Oh, by the way, we should know for sure on Wednesday and will make sure to fill you guys in :)