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 :)

Thankful Thursday - Movement & Happy Hour

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 am SO thankful that peanut has started moving a ton. I was pretty sure I was feeling him/her move for the last couple of weeks. But this weekend the movements were unmistakably peanut!! It is the most wonderful and amazing feeling in the whole world. I find myself having a hard time focusing on anything else because I am just trying to will peanut to move all day long. I am also very thankful that Ronnie is able to feel it too!

I'm thankful for Sriracha sauce. I've been wanting spicy things non stop lately. I could eat something with a kick at every meal! And Sriracha sauce is an easy additive to any meal to add some fire to my food. I must say, I occasionally end up with a little heartburn as a result, but it's oh so worth it!

I'm thankful for a bike-riding hubby. Ronnie's been willing to ride INCREDIBLY slow next to me on a bike while I run most days. I know it can be frustrated to be crawling along, so slowly that balancing becoming a feat, but he is always so willing to keep me company on my runs. What's funny is that we both bring our ipods and wear our headphones, so we don't even really talk, but there's just something about having his company.

Ronnie's List:

I'm thankful for friendly neighbors. Whenever we head out of town our neighbor Rob is the first one to offer up a helping hand or a watchful eye. I need not worry about the trash getting out or the recycling being put curbside. It's always nice to have neighbors that you can consider friends.

I'm thankful for movement. It may be a teeny tiny movement, but it's one of the coolest things that I've ever felt. It's pretty much been confirmed by me that Peanut is for sure moving in there. S/he has kicked or rolled on my hand about 7 times know and I can pretty much tell you when and where each one of them happened. It's so mind blowing to me that a little human is in there and has the ability to make "contact" with his mommy and daddy already. Awesome!

I'm thankful for happy hour. I'm not a big drinker, in fact, I average about 1 drink per month, but I do love half off appetizers. It's pretty much a sure bet that if Mandi and I go out to eat (which is a rare occasion), it will always be to a place that has happy hour. It actually makes me uncomfortable to eat at an establishment later on in the evening if I know that I could have gotten it 50% off just hours earlier. I know, I'm weird (and cheap).

So, what are you thankful for today?

Question from Reader: More Severe Genes?

I love getting questions from readers and this one came at a perfect time in light of some new research that just came out. It sounds, given my answer, that I disagree with the research, but in fact I don't. Genes do play a role in how CF manifests itself in our lives, it does not however play the only role. She also asked about IVF and the role, if any, that PGD played in our decision.

Can I ask ? Is there certain Cf genes that are more sever than others or does it make any difference ? How old were u when ur parents told u that u had Cf I don't know when I should approach that with eoin he is 6. Also congrats on your 13 wk scan all looks great did u guys do ivf with pgd ?

My Response:

You know they do classify genes into one of five classes. The classes are often just a representation of how well our cell is functioning. For instance, class 1 has little to no cell function where class 5 has very close to normal cell function. My mutation DDF508 (the most common mutation in the CF community) is considered a class 2. It's important to remember that despite our “class” of gene we have a lot of control in how CF is presented in our lives. I've met people with my mutation that were very sick early on and I've met people with my mutation that are in their 60s. So to make a long story short, it's not about what gene mutation we have, it's about what we do to take care of ourselves.

I don't know how old I was when my mom first discussed CF with me, but I know I was very young. She presented it like this: some people have brown hair, some people wear glasses, some people are in wheelchairs, some people can jump high, and some people have cystic fibrosis. She made it very clear that I was a normal kid who happened to have CF and I was treated as such.

We did IVF but not PGD. Mandi had the CF screen for all 1600 mutations before we did IVF. Mandi is not a carrier of the CF mutation, so we went ahead with starting a family. If she did in fact carry the CF gene, we would have created our family through other means like adoption/fostering.

So good to hear that your boys are doing well! Just keep them faithful with their treatments and as active as possible and chances are they will have a very normal life.

**If you ever have a particular question you'd like to shoot my way, please feel free to email me at ronnie@cysticlife.org or find me on CysticLife!

My Belly's Shrinking?

We are 18 weeks today! So little peanut is about the length of a bell pepper. We haven’t posted belly shots in a while, so here they are. For some reason my belly actually looks like it’s shrinking in some of the photos, but I’ll just blame the photographer (cough, cough, RONNIE). I swear, it’s getting bigger and my jeans are finally getting pretty uncomfortable…but the rubber band trick is still working – except for the fact I have a major muffin top all the way around because they’re just simply too tight. The muffin top could also have something to do with the 9 pounds I've gained to date (no idea where my weight gain is supposed to be at this point, I'm just trying to hit my goal of keeping it to 10lbs at 20 weeks...we'll see). I think it’s getting to be time for some maternity pants, but I’m cheap, so I’m putting it off!

14 weeks

15 weeks

16 weeks

17 weeks

What do you think? Is it looking bigger to you? When do you think I’ll officially “pop”?

It's ALIVE...

A little update from Baby Land, just one day shy of 18 weeks. I finally have felt peanut MOVE! I've been pretty sure that I've felt little peanut move every once in a while for the last couple of weeks. But the last two days I'm even more sure that it's peanut. It is wayyyy too low to be my stomach growling and feels nothing like gas, so that leaves one option: baby! Any ladies out there that have been pregnant before or currently pregnant and want to tell me if I'm right? Here's what it feels like (my best description): put your hand on your cheek. Now quickly run your tongue along the inside of your cheek. It feels like what you feel on your hand (did that description make any sense?). Well regardless, that's what I've been feeling and I absolutely LOVE it. I don't get to feel it very often. It's generally only after I eat (normally lunch or dinner), when I'm relaxing/sitting on the couch, half laying, half sitting, face-up. And they come in waves of 2 or 3, but they always quit too soon.

The coolest part is that not only have I been feeling peanut, but Saturday and yesterday Ronnie felt it!! Since I know they come in 2 or 3, when we were on the couch hanging out after lunch (both days) and I felt the first little movement, I had Ronnie put his hand on my belly. After a few minutes of holding really still and being very patient, Ronnie got to feel one little movement each day. As soon as the little "pop" happens, we both look at each other and say, "Woah." Ronnie usually follows his "Woah" with a "I felt that" and mine is followed with a "see that's gotta be peanut.....right??"

Another cool development is the ability to FEEL exactly where my uterus is. It's a bit of a crazy feeling, but if I lay flat on my back, I can see and feel a big "ball" in my lower abdomen, from my pelvic bone to about a half-inch to an inch below my belly button. It's a trip! In the mornings it's always the most exaggerated (probably because I'm not as bloated and haven't eaten in 10 hours), so I often lay in bed for several minutes just running my hands over the "melon" that used my be my flat belly. It is my absolute favorite. I like to picture little peanut in there, and love the thought that my hand it just inches from where he/she is camped out!

If you can't tell, I'm starting to become really fascinated with this little being inside me and the changes that peanut is causing in my body (and the FUN changes, not just the acne and bloating which I've known all too well for the last 18 weeks!). I cannot wait for all the fun to come. It is finally becoming REAL and I can't imagine what it must be like to feel baby many times a day in full force!

That's about it from our neck of the woods. Who's doing something fun for Memorial Day??

**By the by, that is NOT a legit picture of my belly. If and when we can make out peanut's toes we'll probably be too fascinated and shocked to remember to grab a camera!!

CF in the News

FDA Approves Drug for C. Diff Symptoms:

http://ow.ly/55k7Z

Cystic fibrosis causing bacteria may harbour deadly MRSA super bug cure: 

http://www.dailyindia.com/show/442210.php

Cystic fibrosis bacteria could help fight back against antibiotic resistance: 

http://www.physorg.com/news/2011-05-cystic-fibrosis-bacteria-antibiotic-resistance.html

Mauli Ola Foundation Concludes Successful National Cystic Fibrosis Month with Three Events:

http://ow.ly/55k9Y

Adults with cystic fibrosis benefit from specialized St. Mary’s program:

http://www.therecord.com/news/local/article/537629--adults-with-cystic-fibrosis-benefit-from-specialized-st-mary-s-program

Regenocyte Successfully Treats Cystic Fibrosis Using Patients’ Own Adult Stem Cells:

http://gamutnews.com/20110525/9567/regenocyte-successfully-treats%C2%A0cystic-fibrosis-using-patients-own-adult-stem-cells.html

McMaster research helping battle cystic fibrosis:

http://www.thespec.com/opinion/columns/article/537399--mcmaster-research-helping-battle-cystic-fibrosis

Genes Tied to Severity of Cystic Fibrosis Identified:

http://ow.ly/55kbR

So Why Don't You Exercise?

E-mail: Hey Ronnie-I am pretty new here...but have been following your blog for the past couple of weeks. I am sort of in a similar situation. For as long as I can remember I have pretty much had one IV clean out per year which would last 2-3 weeks and leave me feeling great. However, this past fall I was on IV treatment for a full 10 weeks...it was hell and even after that was all over my PFT's were still at an all time low. About a month ago I went to see my doc and my FEV1 was at 43% and he is trying to convince me to go on IV again. So basically all of this has scared the crap out of me. Since then I have been working extra hard to try and improve my PFTs without IV meds. I have always been really compliant, but I've added even more neb treatments & chest pt sessions to my routine. My efforts have shown some improvement in my FEV1...now up to 48%...but still not enough to make me happy.

The one thing that I can't seem to get on track with is exercising, and I think this could really make a difference. Some of the problem is because I am lazy...but most of it is because I feel like I have no time! As it is I feel like I have very few hours a day where I am not doing something CF related. I try not to let CF consume my life, but recently that's how I feel. Sometimes it seems like I spend my entire day doing treatments just to go to bed and wake up and do it all over again the next day. So I am sort of having a quality of life issue. I was just wondering how you manage to get in so much exercise time plus regular treatments...and still feel like you have somewhat of a life...haha?!? I should mention that I am not working right now...so I don't have that to worry about...but I do need a lot of sleep (to feel totally rested I need at least 9 hours a night.)

Anyway, sorry to dump that all on you, but I think what you are doing is great and very inspirational! That is a great improvement in your PFTs...I am very happy for you!! Anytime I am read your blog I keep telling myself that I just need to bite the bullet and do it! But easier said than done...{Name kept private}

Response: Hey {Name kept private}-Thanks for the message and trusting me to give you some advice. First, here are some harsh realities:

1) Hardly anybody WANTS to work it. It is only a select few people that actually have the desire to work out everyday.

2) You NEED the benefits of working out more than most people

3) Most people CLAIM to not have the time to work out

4) Without a job, you have MORE time than most people to workout

Now that we have those out of the way, let's talk about some solutions. First, you need to be convinced that working out is going to better your quality of life AND lengthen it. So while you, like the other 99% of the population, don't feel like working out, you have to realize that it is more important to you than that 99%. The key is just to start small and grow from there. Even if you can commit just 30 minutes a day to start, that's all it would take.I know however that you can commit much more, so let's look at how much time you actually have in a day. First, you get your 9 hours of sleep from 10pm-7am. Now your left with 15 hours. Take out 4 hours for treatments, leaving you with 11 hours. Now subtract 2 hours for meal prep and eating, leaving you with 9 hours. If you start working out 30 minutes a day, you'll be left with 8 and a half hours. That's 8 1/2 hours to do anything you want! Most people in the "real world" probably only have 2 hours at the most to do anything that they would want. You and I are actually very blessed with the amount of time that we have for our own "stuff". Think about people who work a 9-5 and then come home and have to devote their "free time" to raising a family AND working out.

So I hope you see by the last paragraph that you actually have PLENTY of time per day. Now, with the laziness. Sometimes this is the toughest thing to overcome. Here's some tips: First, commit to a small amount of time per day until you are completely comfortable and committed to that time. Once you are in a good routine, you can bump it up by 15 minute increments. Second, is there anybody that you can walk/run/workout with? It of course makes things easier if you have a motivational and accountability partner. That way the days that you are feeling "lazy" there is someone around to kick your butt into gear. I also believe that it is best, and most important, to workout on the days that you have no desire to. Really concentrate on pushing yourself on those days. When you're finished, it is more rewarding, and think how easy it will be to go on the days that you are motivated.

Lastly, I am a huge advocate for hospital stays. They really help me and I know that for ME, it is what I need. I've never done well with home IV's and the hospital forces me to rest. There are some countries around the world that make their CFers go into the hospital 3 times a year, and they usually have better longevity rates. I usually go in whether I'm feeling sick or not. Because you have to remember, once your lung scars or dies off, that's it, it's gone and it's not coming back. By staying one step ahead I think you put yourself in a better position to avoid that.I hope this helps. Sorry for the long response, I just wanted to cover everything. If I missed something or didn't answer one of your questions, please, let me know. Also, I wanted your permission to put your questions and my response on my blog www.RunSickboyRun.com. I won't use your name and I think it could be beneficial for others to see.

Please keep me updated with your PROGRESS cause I KNOW it's coming.

Do Life,
Ronnie

Thankful Thursday - Horrible Acne & American Idol

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 our circumstances. I was sitting with friends and we were discussing various topics such as finances, housing, relationships, etc. And I just sat there thinking, "Man, we are so incredibly blessed." There are so many circumstances, struggles and situations that others have to deal with in their lives, and it often feels like we have been dealt a very easy hand. I am so grateful for all that the Lord has blessed us with. Sure, we have things in our lives that some may consider "struggles," but when I hear what others have to deal with, I find myself thanking my God for the minor issues we have!

I am thankful for my hubby and his contributions around the house. Ronnie does far more around our house in the way of chores than I do, and I am so thankful that he does all that he does. He's constantly washing dishes, picking up, gardening, you name it! Last night, I had to go to my office for some meetings and then I had small group shortly after getting home. I figured I wouldn't eat a real dinner because there simply wasn't time. But when I walked in the door, I smelled food. Ronnie had made a delicious soup, and had it ready for me when I got home. I don't know what I'd do without him kicking in 75% of the work around here!

I'm thankful for face wash. My face is finally starting to clear up (and by clear up I mean it's now just horrible acne instead of horrifically hideous acne). I went to a dermatologist and got some face wash that is seeming to help (after 4 weeks of using it). I am so thankful that at least now it's not so angry and inflamed that it itches. I'd rather it just look terrible than FEEL terrible. Small victories are all I'm hoping for at this point, if you can't tell! Hopefully it continues to clear up and I only look slightly like a monster by the time this baby makes its appearance.

I'm thankful for a great year of marriage - and many, many, many more to come!!

Ronnie's List:

I'm thankful that I could just watch Scotty win American Idol. He's been one of my favorites since day one and I grew to like him more as the show continued. It's just so nice to see a kid that humble with such an amazing voice and good looks. What really won me over was when he cried during his whole hometown visit. I was really pulling for him to win and I'm just glad he pulled it out. The fact that he first gave thanks to God for his win was just icing on the cake.

I'm thankful that we got to spend some time with Mandi's college friend and her husband. Mandi's friend, Jenna, happened to be out in Phoenix for a conference and as a result, we've been able to spend some time with her and her husband Brandon. They are both "salt of the earth" type of people and I have a feeling that we'd all hang out a whole bunch if they didn't live in Tennessee. Brandon is currently a football coach so we've had a whole lot to talk about (for those that don't know, I was also a football coach in a past life).

I'm thankful for Emi. Emi is my new little 2nd cousin that my 1st cousins will officially adopt tomorrow. She is such a cutie and has been an absolute blessing to not only Tim and Gina but to the whole extended family. We are a family full of love, so any new member that we can love up on is welcomed with opened arms. Can't wait to watch you grow into a beautiful young woman Emi!!!

So, what are you thankful for today?

Respiratory Therapist - What I Expect

Today I had the opportunity to sit in on an advisory board meeting for the respiratory care practice of Carrington college. The basic goal of this meeting was to make sure that the students Carrington college was putting into the field were as prepared as they could possibly be to perform their job at a high level. There were representatives from the college as well as various hospitals and medical institutions around the Phoenix area. I was invited to sit in as a “public member” and speak to those in attendance about my involvement in the CF community. There wasn't much at this meeting I could actually contribute to other than that, but it was still interesting to be a part of the process.

Being part of this meeting did get me thinking about my experience with respiratory therapists over the years. I then started to think about my answers to various questions that they would ask somebody like me (Believe me, I had to bite my tongue not to just speak out of turn at the meeting, but I wanted to make sure I'd be invited back). As a result of my daydreaming I figured I would share with you guys three of the basic things I expect out of respiratory therapists (RT).

Effort. I can say without a doubt that the number one thing I expect out of every single RT is effort. It literally makes my skin crawl when someone walks into my room and gives me a hand pound comparable to a corpse. Now, I admittedly take a very hard pound and not every one that comes into my room has the physical strength to comply, but I'm not talking about them. I'm talking about the RT's who are very physically able to perform a good, strong hand pound, yet choose to give a piss poor effort. And if you don't have the physical strength, just come in giving it your best. It doesn't matter how much you weigh or how strong you are, everyone can give 100%.

Attitude. And more explicitly- a good, working attitude. I understand that you have other stuff going in your life besides work. I totally get that you and your husband may be having issues. I can sympathize with you that some of your work takes extreme physical labor. I know that some days you're just simply dog-tired. I know that for some of you this is "just a job". So how do I put this nicely? Ummmmmm, you're not a volunteer. Unlike me, you're actually getting paid to come into my room and perform a task. Unlike me, you're not forced to be there because you feel like crap. And unlike me, you're able to go home to your wife. I understand that you're human. I understand that you can't always “be on". But please understand that I tell you the truth when I say "I'd much rather not be here then you".

Don't stink. You wouldn't even think that RT's coming into my room smelling like an ashtray would be an issue, but believe it or not, it is. Just as I wouldn't go into someone's house smelling like alcohol who was suffering from cirrhosis of the liver, you shouldn't come into my room smelling like smoke. It's downright disrespectful. And yes, I would rather you come in smelling like body odor then smelling like you just took a shower in the latest fragrance by Britney Spears. What can I say, my lungs are sensitive (and even more so when I'm in need of a tune-up). So although I respect your right to smell how you want to smell, I respect my right to breathe even more.

So that's it, a short and sweet list of what I expect out of respiratory therapists. So what do you think guys? I'd love to get your thoughts and opinions in the comments section below.

Anniversary Presents: Mission Accomplished

I was finally able to give Mandi her anniversary presents tonight! I was waiting for one of them to come in the mail and the special day falling on a Sunday didn't help in that department. But, her reaction was all I needed to know that it was worth the wait. For those of you who don't know, the first year anniversary is also known as the "paper" anniversary. Mandi and I had been racking our brains to come up with some creative gifts to exchange for weeks now and I was so glad that the moment finally arrived.

Her first gift was a stroke of luck that I happened upon while cleaning out our "catch-all" closet a couple weeks ago. You know, that closet that gets all of the stuff that doesn't have anywhere else to go. Well, we had been putting stuff in our catch-all closet since May 22nd of last year and it finally got to the point to where I couldn't look at it anymore. While I was cleaning it out, I stumbled upon Mandi's college diploma. One thing you must know is that one of the first things that drew me to Mandi, and ultimately made me fall in love with her, was her drive, focus and the fact that she's super smart. To me, her college diploma is very representative of that. The fact that it also says Summa Cum Laude is just icing on the cake (I had to brag on her a bit). So I bought a decent looking frame, threw her diploma in it and told her how much I loved her brains. That my friends was gift number one.

Gift number two was a little more difficult to put together. I also need to give you a little bit of a back story. When Mandi and I were pretty fresh in our relationship (about 6 months into it), we took a cross-country road trip. On this road trip we listened to a lot of music. One of the artist we listened to a ton was Corey Crowder (listen to his music here and visit his site here). Our favorite song during that road trip was a son that he sings called "Starting Forever". We actually commented to each other that that song would be a perfect first dance song for a newly married couple. Well, as fate, luck, love and determination would have it - we ended up being that couple. We even convinced Corey and his wife Laney to attend our wedding AND to sing that song live as our first dance song. And it's not like they could just roll out of bed and do it - they had to fly across the country to be at our wedding and with our eternal gratitude actually made it work! Not only does Corey and Laney hold a special place in our heart, but the song "Starting Forever" does as well.

I reached out to Corey and Laney a couple of weeks ago to help me out with my second gift. I asked if Corey could scribble down the lyrics to our first dance song on a piece of paper that I could frame in our house. Being the awesome guy that he is, he obliged and today it arrived in the mail. Corey took the time to hand write the lyrics out and also included a special message to both Mandi and I. Like I told Laney, just the fact that I thought of this gift would be what would blow Mandi away. I'm not the most thoughtful or romantic guy on the block, but after hours upon hours this is what I came up with for my "paper" gift. Let me just say - it's as if I gave Mandi solid gold. When she opened it up and realized what it was, tears were streaming down her face and she could barely get out the words to tell me how special it was. Mission accomplished.

Thank you again to Corey, Laney and my one good idea a year :)

**Oh yeah, and as a bonus, I bought a powerball ticket for our anniversary and won 103 bucks!!