Who needs a walker??

I'll give her this, she's resourceful!!

Thankful Thursday: Spontaneity & Oxygen

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. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for spontaneity. We decided on Thursday last week to go to Florida for the weekend to see my Grammy. So we bought out tickets and were off the next day. We aren't spontaneous like that very often, but I love when we are...especially with Mckenna. I'm hoping we can keep it up. I'm thankful that we're not totally boring...YET!

I'm thankful for family. We got to spend a lot of time with family over the weekend and it was AWESOME!! We all had so much and there's nothing better than fun time with family. We have the best family!

I'm thankful for carpet. My grammy's house has a lot more carpet than ours does, and it sure is nice not having Mckenna crack her on tile...all day long! I think Mckenna is probably thankful for carpet too. Mckenna is pulling up on everything these days, even things that aren't very sturdy, which leads to lots of falls. Plus, she's getting really brave and letting go of things to just stand on her own or to dive for other things. All of it means she's taking lots of falls. 

Ronnie's List:

I'm thankful for an easy going baby. Mckenna seems to just go with the flow despite what situation we put her in. She's certainly not a bump on the log, but she also seems to be pretty happy no matter what. I love that we can get her to smile at the drop of a dime...or anything that makes noise really :)


I'm thankful for the decision to sleep with oxygen. It's been quite awhile that I've been sleeping with the stuff, but there still are times that I can't sleep with it. On short trips, I never bring the oxygen concentrator with me, but on long ones we'll rent a unit. It's during those short trips that I appreciate coming home to the oxygen even more...it's amazing how much better I sleep!

I'm thankful for breaded shrimp. I don't eat anything breaded that often, but when I do, it's always good, especially shrimp. There are times I wish that we lived closer to an ocean so I could enjoy the fresh stuff, but then again, if we lived near an ocean, we could only afford to eat Ramen.  

So, what are you thankful for today?

Why are American kids so spoiled??

I read a fantastic article the other day that I just had to share. I think that much of it can help parents out there of cysters and fibros, as well as kids in general. I won't share the entire article here, but I encourage you to click on the link provided and check it out. Come back here and tell me what you think!!

In 2004, Carolina Izquierdo, an anthropologist at the University of California, Los Angeles, spent several months with the Matsigenka, a tribe of about twelve thousand people who live in the Peruvian Amazon. The Matsigenka hunt for monkeys and parrots, grow yucca and bananas, and build houses that they roof with the leaves of a particular kind of palm tree, known as a kapashi. At one point, Izquierdo decided to accompany a local family on a leaf-gathering expedition down the Urubamba River. 

A member of another family, Yanira, asked if she could come along. Izquierdo and the others spent five days on the river. Although Yanira had no clear role in the group, she quickly found ways to make herself useful. Twice a day, she swept the sand off the sleeping mats, and she helped stack the kapashi leaves for transport back to the village. 

In the evening, she fished for crustaceans, which she cleaned, boiled, and served to the others. Calm and self-possessed, Yanira “asked for nothing,” Izquierdo later recalled. The girl’s behavior made a strong impression on the anthropologist because at the time of the trip Yanira was just six years old. 

While Izquierdo was doing field work among the Matsigenka, she was also involved in an anthropological study closer to home. A colleague of hers, Elinor Ochs, had recruited thirty-two middle-class families for a study of life in twenty-first-century Los Angeles. Ochs had arranged to have the families filmed as they ate, fought, made up, and did the dishes. 

Izquierdo and Ochs shared an interest in many ethnographic issues, including child rearing. How did parents in different cultures train young people to assume adult responsibilities? In the case of the Angelenos, they mostly didn’t. In the L.A. families observed, no child routinely performed household chores without being instructed to. Often, the kids had to be begged to attempt the simplest tasks; often, they still refused. 

In one fairly typical encounter, a father asked his eight-year-old son five times to please go take a bath or a shower. After the fifth plea went unheeded, the father picked the boy up and carried him into the bathroom. A few minutes later, the kid, still unwashed, wandered into another room to play a video game. 

In another representative encounter, an eight-year-old girl sat down at the dining table. Finding that no silverware had been laid out for her, she demanded, “How am I supposed to eat?” Although the girl clearly knew where the silverware was kept, her father got up to get it for her. 

In a third episode captured on tape, a boy named Ben was supposed to leave the house with his parents. But he couldn’t get his feet into his sneakers, because the laces were tied. He handed one of the shoes to his father: “Untie it!” His father suggested that he ask nicely. 

“Can you untie it?” Ben replied. After more back-and-forth, his father untied Ben’s sneakers. Ben put them on, then asked his father to retie them. “You tie your shoes and let’s go,’’ his father finally exploded. Ben was unfazed. “I’m just asking,’’ he said. 

A few years ago, Izquierdo and Ochs wrote an article for Ethos, the journal of the Society of Psychological Anthropology, in which they described Yanira’s conduct during the trip down the river and Ben’s exchange with his dad. “Juxtaposition of these developmental stories begs for an account of responsibility in childhood,” they wrote. 

Why do Matsigenka children “help their families at home more than L.A. children?” And “Why do L.A. adult family members help their children at home more than do Matsigenka?” Though not phrased in exactly such terms, questions like these are being asked—silently, imploringly, despairingly—every single day by parents from Anchorage to Miami. Why, why, why?

Read more http://www.newyorker.com/arts/critics/books/2012/07/02/120702crbo_books_kolbert#ixzz20HL8u4Wk

So what do you guys think, does this researcher have a point? Have you seen this in your own upbringing or the upbringing of others?

Treatment Fights

Here's another great question by a momma in the community. This one is of course VERY common and a struggle that nearly every parent faces. If you don't face it now, more likely than not, you will in the future. Hopefully this helps at least just a little bit.

Thank you ronnie for taken the time to get back to me .Well here it is how did your mother dill with you not taken your medication ,and treatment and when did the crying stop and when did she move on and let you do it on your own ? there is some days i just want to give up and move on with my life ,but he is my life and well your a father you no that your child is your world what are you going to do if they not here ? Hope that doesn't happen but he isn't do the thing he needs to do . And on the idea's i would love to help the next child with cf get it that they need to do they treatments and medication before it to later thats all ,if i could make a different in someone , help them understand that they mother is doing what is best for them .Thank you so much for taken the time to talk with me.

My mom instilled rules and stuck to them at a very early age. I literally had no other choice but to do my treatments. My life really sucked when I refused to do them. After a couple times of my life sucking, I decided that it wasn't worth fighting.

He lives with you right? The only thing you owe him as a mom is food, shelter and clothing. Everything else is a privilege and not a right. If I remember correctly, he plays video games? Well I can assure you that there would have been no video game playing in my mom's house if I didn't do my treatments. If she caught me sneaking them in at night, she would have cut the power cord. 


In fact, I've told a story many times that has to do with just that - treatments and video games. I was feeling brave one day and I refused to do my treatments. I was "too busy" playing video games with my friends. My mom had just the solution. She walked to the kitchen drawer, pulled out a pair of scissors, came into my room, picked up the power cord to my gaming system, and proceeded to cut the cord (or so I thought). Obviously it got my attention and I believed 100% that she was going to do it. From then on, I remember much fewer fights over treatments :)

As a parent, you have to be willing to endure short-term pain, for long-term reward. He'll say all sorts of nasty things to you now that you're trying to put your foot down, but I assure you, deep down, he's knows it's out of love. In the long run, it's much more mean to your child NOT to demand treatments. You need to be the voice of reason - through force or love or both - when we're being unreasonable. Refusing to do something that will in fact improve and extend our lives is totally unreasonable.

My mom let go when I moved out of the house as I was no longer her responsibility. Did she still love me? Of course! But at some point she had to let this little bird fly free and make my own stupid decisions. There was no time more perfect than when I moved out and became "a man". Other parents may feel the time is sooner however and each family needs to decide what works for them and their family.



I can tell you this though, and I mean it from the bottom of my heart - Parents of CFers have ONE job as it relates to CF; You must make us do our treatments come hell or high water.

One Man Wrecking Crew

Thankful Thursday: Snuggles & Chill

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. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for "extra" brothers. Ronnie's brother, Grant, was up for the last couple days, and we had his other brother, Andrew, over for dinner Tuesday and hung out all day yesterday, and let me tell you, they are such good guys. I love that marrying Ronnie gave me "extra" bothers!!!! And I love that we get to see them so much.

I'm thankful for a close gym. It makes it easy to just get in a quick workouts, on days it would otherwise not work.

I'm thankful for snuggles. Mckenna has been extra snuggly while nursing before bed...and I LOVE IT!!!! She just lays and looks at me while she holding onto her little blankie. It's my favorite time of day!!

Ronnie's List:

I'm thankful for a chill baby. Yeah, she has her moments where all she wants to do is be held or be crawling all over us, but for the most part, she's happy on her own. We were hanging out as a big group yesterday, and during lunch time Mandi looked over at Mckenna in her GoPod and said "Oh, forgot she was out here". Mckenna was happy as a clam snacking on cheerios and playing with random stuff hanging off of her contraption.


I'm thankful for an overcast 4th of July. Typically it hot as all get out on July 4th and the last thing you want to do is be outside if you're not in the pool. Well, yesterday was a overcast and rained a bit, so it was a cool 78 degrees almost the entire day. We had a great time hanging outside all day - whether in the pool or out of it!

I'm thankful for our bike lights. When we purchased our bikes, we also bought some cool lights that attached to the front and back for safer night riding. The front one is white and the back one is red. They have various settings and can flash, blink or stay on constantly. My brother and I rode our bikes to a fireworks show last night and the lights were definitely doing their job as most cars didn't get within 15 feet of us :) 

So, what are you thankful for today?

Happy Birthday Grant!!!

Most people are celebrating America's independence today, but we'll be celebrating the big 2-0 with my little brother Grant. Speaking of "little", he's been very committed to the weight room lately and it really shows!

I'm so proud of you for working so hard on your fitness, in the classroom, and just at being awesome in life in general. Love you brother. Happy birthday!!

 Grant is on the left and Andrew is on the right :)

Treatment Time Support

I feel so blessed that parents and patients in the community actually think enough about my opinion that they continue to send questions my way. Some questions that I get are pretty common, but I've got to say, I've never had this one before. It's kind of surprising though because this is actually a GREAT question!! I want to hear from you guys though, what do you think??

I just have a quick question for you. When you were growing up, did your Mom spend time with you each time you did your treatments? I am feeling a TREMENDOUS amount of guilt since I am not able to spend time doing something with ____ when he does his treatments lately, especially the 5 nebs a day he's now having to do. He seems totally content playing his video games when he does his nebs and vest and said it doesn't bother him that I'm not hanging out with him. But I can't help but feel guilty. I don't want him to think he's dealing with this all by himself. Life just has been so flippin' busy lately, and my daughter has been a bit more needy too, which makes it that much harder. I guess I was just wondering if you would ever get mad at your mom and disappointed with her if she didn't have the time to sit with you during treatments. Any input or suggestions you could give me would be very much appreciated! 

Thanks for letting me vent. I couldn't think of a better person to ask this question to since you seem to credit your mom a ton for your compliance and good health as an adult! I just want _____ to feel that same way towards me when he's an adult, and I don't want to let him down. Thanks again, Ronnie! Hope you and your family are doing well and enjoying summer!

 __




We have to keep in mind that treatment time as I was growing was completely different. Until I was 14, I had one neb (albuterol) and I was hand pounded by my mom or step-dad as I didn't have a vest until the age of 20. So, our situations were very different. My mom and I certainly bonded during treatment time, but that's because she was beating me and we had no choice but to connect during that time 

When it comes to you and Tuck, I'd take him at his word. I know when I was playing my video games, the last thing I wanted was for my mom to bother me. There are certainly ways you can show him you're thinking about him during that time without being within arms length. From time to time maybe you make him his favorite snack and bring it to him? Maybe you surprise him with a trip to the ice cream shop after his treatment because "it means a lot to you when he takes such good care of himself"?

I would focus more on what you say and what you do for him outside of treatment time. Love up on him. Let him know how special he is. Be sure to tell him how much you appreciate his hard work. Be there to facilitate the great life that happens after treatment time. Most of all, let him know that he is taking care of himself for all of you, so you can enjoy time as one big happy family!

I think it's great that he is showing some autonomy already with his treatments. I'd stay out of the way and do what you can to positively reinforce that behavior.

I've Got the Itch Again

Yup! That's right. I totally have the itch again. I wasn't sure how long after I had Mckenna it would be before I had the itch again, but last week I figured out the answer...8.5 months. I'm ready to do it again. I finally want to work out....

....what did you think I was talking about ;-)

I have been working out ever since Mckenna was born. I started walking when she was just a week old and was running a week or so after that. However, I did it because I felt like I should and felt like I had to, but not because I truly wanted to. Honestly, I was pretty sick of working out. I worked out like a champ while preggo. I ran 6 days a week, lifted 5 days a week, and did some other form of light cardio in addition 5-6 days a week. I worked out somewhere between an hour and two hours 5-6 days a week. I loved it. It was what made me feel energized and "normal." I felt so good pregnant because I stayed active. I felt like I could do anything because I was in such great shape. I'm certain that is why my pregnancy, labor and delivery were so wonderful. But to be honest, when I had Mckenna, I got out of my normal routine and I was tired, and I simply didn't WANT to do it. So I did the bare minimum to stay in shape, but I hated every second of it. Also, I got my pre-pregnancy body back quickly (in part because I stayed in great shape, in part because I didn't gain too much), and so I wasn't working to get back into shape or to lose weight, I was simply having to work out to maintain the shape I was in from how hard I had worked during pregnancy.

All that said, last week something clicked again. I actually truly enjoyed being at the gym. I did a few extra cardio classes because I wanted to! It was a great feeling. I had picked up what I was doing and was working out 5 days a week, lifting and doing cardio, ever since Mckenna was a couple months old. But I wasn't really enjoying it. It felt like a chore. But last week I found myself looking forward to the gym. It was such a cool thing. I hope this keeps up because it sure makes exercise easier.

So why am I writing a blog about this? Because I learned a couple things that may be helpful:

1. Sometimes you just don't feel like working out, but it's important to fake it til you make it! Continuing to work out, even if it was scaled back a bit, helped keep me in shape so that when I was ready to go full-bore, I could. It also kept me sane, even if I didn't know it and hated it. Exercise is simply good for the mind...even if you don't like it or want to. So I learned if you just do it while you hate it, it's just a phase and it will pass.

2. Switching up what you're doing can help you fall back in love with exercise. I was dreading my runs. I hated doing it. So last week I asked myself, "why not try different cardio?" There's no reason I can't take a break from running for a month, do different cardio during that time, and start running when I start missing it again. Which leads to my next lesson learned:

3. Switching up what you're doing is good for your body. This last week, my body HURT!!! Holy cow, I was one, big sore muscle. My body wasn't used to step class and kick boxing and riding bikes and walking hills. And you know what? I LOVE SORE MUSCLES!! It means it's working. So switching up my cardio was the best thing I could do for my body to work different muscles, differently. It will be beneficial in the long run.

4. You eventually get your mojo back. Even if you have to fake it for a long time, you will eventually fall back in love with working out. Now that my mojo is back...I'm going to capitalize on it and get my butt into the gym even more!!

First Steps?

Who's that baby in the mirror?

Thankful Thursday: Kisses & Opinions

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. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for moms and dads. My mom and dad are back in town and seeing them is awesome. We have so much fun with them and I literally never can get enough. What's more, my mom spent the night at our house on Monday night, and when I woke up, she had folded ALL my laundry. She's so good to me!!

I'm thankful for kisses. Mckenna isn't a big kisser (we'll be thankful for that when she's in high school. Ha!) But she does occasionally give us kisses and when she does they are with an open mouth, and super wet, and I love every second of them.

I'm thankful for texting. I'm not a huge fan of lengthy conversations on the phone. And I'm not a huge fan of having to take for 10 minutes, full of "hi" and "how are ya" to just establish a random meeting time or something of the sort. So texting is perfect!

Ronnie's List:

I'm thankful for my three little cantaloupe that could. In a not so stunning development, the hot Arizona sun has wiped out most of my garden. I still have some acorn and spaghetti squash hanging on as well as melons and tomatoes. I'm mostly interested in the cantaloupe however because just once I would like to walk out there in the morning, cut it off the vine, and then eat it for breakfast. How cool would that be??



I'm thankful for a wife with a different opinion than me on many different topics and issues. Even though I still think I'm always right *wink* it's nice to hear a different side of the story from someone that I respect and trust implicitly. I don't think we'll ever see on to eye on certain political issues, but secretly, deep down, I kinda hope we never do. Keeps things interesting!! 

I

I'm thankful for "goodnight" kisses. I put goodnight in quotes as they do not only happen at night, but during the day as well. So I guess they are more like "nappy time" kisses. When I get Mckenna ready for her naps before I hand her off to Mandi to be fed, I always tell her I love her and pucker up for a kiss. In the past, I've had to force the kiss on her. Lately, she's leaning into me for a nappy smooch. Love.

So, what are you thankful for today?

I Didn't See This Coming

While I was cleaning up tonight while waiting for my coffee to brew (yes, I have a cup of coffee with a little tupperware container of dry cereal every night) something funny happened. I really, really missed Mckenna. Such a big part of me wanted to burst into her room, wake her up, take her out of her crib and just hang out with her. I've had similar feelings for the past couple of weeks, but they seem to just be getting stronger. I really miss my daughter when I'm not with her.

Now, many of you are probably thinking "what's the big deal? This doofus misses his kid", but for me, it is a big deal. I've been consistent with the fact that I'm not a baby guy. I like babies. I've always enjoyed playing with babies. I always gooed and gawed them at grocery stores, restaurants and friends' homes. But, I never thought that I would be a big baby guy with one of my own. Yeah, I'd be there for her and do absolutely anything for Mckenna or my wife, but the thought of a baby didn't really get me uber excited. I always found myself fast-forwarding to the "throw the ball in the backyard" stage.

**NOTE: I can see this post getting a little misconstrued, but please bear with me. I'm the most blessed guy in the world and Mckenna was an answer to my prayers. I've been absolutely smitten for the past 8 months and have been given yet another reason to wake up and kick booty every day...as if Mandi wasn't enough already. I'm hoping some of you dads or even moms kinda get what I'm trying to get at in this post**

Well, lately, I'm a baby guy. At least, a my baby girl kind of a guy. I don't know if it's her ever-developing personality or the fact that she makes me feel like I make her day, but whatever it is, she's got me. I find myself eager to fall asleep at night because that means I'm closer to being able to see her smiley face and bright blue eyes in the morning. I find myself waiting in bed like a little kid full of anticipation waiting for Mandi to bring her to me in the morning so we can have our traditional "tug on daddy's oxygen tubing" time. I actually look forward to just sitting with her in the playroom and watching her decide which toy she's going to play with. I never thought that I would fall this fast. I thought I could hold out until she was a bit older.

I have a confession: I've fallen for this little girl and I can't wait to spend every day showing her why God chose me to be her dad.

I never thought I'd be that guy, but then again, I've never had my own little girl before.

Don't Know What You've Got...

...until it's gone.

As of about 6 hours ago, I got my computer back. I have been working from my iPad for the last 10 days, and although it's done a great job and truly been a life-saver, I'm so thankful to have my laptop back. Working on something without a mouse or a track pad can be quite challenging. Thankfully, because of a sweet Christmas present from the in-laws, I was still able to type fairly easily with my case slash keyboard. The only bummer was not being able refer back to emails for specific dates, data and info that were stored in folders on my computer. (If I've been a bit slow to respond to some of your emails, this is why). All-in-all though, it wasn't the worst thing in the world, but it also wasn't something I hope happens again in the near future.

One of the (many) reasons my computer landed in the shop was for a broken off headphone in the audio jack. For the past several months, I've been receiving audio into my left ear only and had earphones dangling from my computer most of the time. I also had to have them plugged in and spun in a certain direction to get any sound, so it was always a little adventure if I wanted to put some sound to lips moving on my computer screen. It's funny how much you come to miss good quality sound when it's not available at the drop of a hat anymore.

With that said, the first thing I did when I got my computer back was plug in my headphones and watched a YouTube video. It happened to be our engagement video (shameless plug) which I happen to think sounds better with sound coming into both ears :) I'll tell you what, I had a smile ear-to-ear when I heard that clean, crisp and loud sound come through my headphones. It's funny how something I never really thought about much in the past is now so treasured once it was compromised and/or taken away.

So here's my question, what's that thing in your life? If you're anything like me, the list can go on and on and on. It's amazing how many things in the past, and still in the present, I've taken for granted. I've taken my family for granted. My education. My friends. My God. My work. My relationships. My health.

The last one was a big one. My health was something that I never really focused on. Yeah, I took care of myself, did my treatments, went to the hospital and did the "CF thing", but I can tell you that others were way more focused on my health than I was. It got to the point however that I started to take it for granted. I was fooled (by myself) into thinking that I could do the bare minimum for the rest of my life and get away with it. After all, I felt great and was able to do anything that I wanted. It all came crashing down in January of 2009. That was the month and the year I realized how fortunate I was to have the health I had been given. That was also the month I realized how much I had taken that gift for granted. It's so easy to do.

I know try to live in such a way that the "small stuff" no longer passes me by without my appreciation. I try to remember that many things I experience are privileges and not rights. I try to remember how I felt when I almost lost everything. Most of all, I try to appreciate everything and everyone that has been brought into my life by a Man who knows me better than I will ever know myself.

Mckenna Monday: Skills and Personality

Well guys, I apologize for my post posting a bit late this morning, I'll blame my mom. I can't get on the computer by myself, even though whenever it's sitting unattended, I try. Anyways, I'll tell you what's new with me because I'm changing so much that even I realize it.

First things first, I'm able to really move now. I am all over the house now, crawling around. I hear a lot of giggles when I crawl, whether it's at home, the gym child care, or church child care, but that's ok, it works for me. My crawl just has style. Mom says she thinks it's because I spend most my time on tile, so I'm saving my knees, but I just do what I do and don't care why. It works for me! I am quick and I get where I'm going, and I LOVE it! I usually like to announce when I'm coming into a room and moving through the halls. I yell and squeal as I make my way places. It's fun to hear my voice echo and then mom and dad know where I am.

I also have learned to pull up on things. I started about 6 weeks ago pulling up for a seated position, but a few weeks back I learned how from laying down, so I can just crawl over to something and boom, I'm up. I LOVE IT. I get so proud when I pull up onto something and mom and dad see me standing there all by myself. I can pull up on couches, toys, furniture, sliding glass doors, my crib, you name it. I love see what I can get up on. Mom and dad say I'm brave all the time. Usually that comment comes before or after I am standing holding onto one piece and turn around and dive for another. It generally doesn't end well, but I try and try again. When I fall, mom and dad say "Kaboom" and usually that makes me feel ok about the tumble and I don't cry. I'm tough. I bonk my head and I get back up. But sometimes it just hurts too much and I do cry. I kind of like when that happens because they scoop me up and then I feel better.

I have had a lot of firsts this last week. I rode on a bike for the first time. WAY cool. I love feeling the wind in my hair...well on my bald scalp. I also LOVE that I can see my dad riding next to mom and I. I wave at him sometimes and he waves back. It's so fun! Also, this weekend I swam in Nana and Papi's pool for the first time. It was SO fun. I have a little lady bug raft that I play in. It even has a little sun shade. And in their pool I did the neatest thing. My daddy took me, and put me UNDER the water!! I was a bit shocked the first time. And then when I came up, everyone cheered and clapped and gave me high fives (yeah, I have mastered the high five. I don't quite get why when you do something good, you hit the palm of someone elses' hand, but I amuse my parents and when they put their hand up and say, "high five," I hit their hand and smile). Once I saw what a good job I did and how much everyone loved it, I smiled really big. So daddy did it a few more times. It's pretty neat. Daddy blows on my face so I hold my breath and then he puts me in head first like I'm diving and pops me right back up. It is SO fun. Each time he did it I smiled bigger and bigger afterwards because I got more comfortable and loved it. It's kind of hard to explain how we do it, but it's fun!!

Lastly, mom and dad say I'm goofy and silly. I don't know what that means, but I do love to make them laugh and do things just to make them laugh. For example, I like to gargle things in my mouth (see video at the bottom), like water and my own spit up. I love the sound and I like that it makes mom and dad laugh. I also like to make funny sounds. I do it for me mostly, but I especially like when one will make mom laugh, and then I just do it over and over til she doesn't laugh at it again. Sometime she then makes the same sound and it makes me laugh!

Oh, and one more thing, we play this game where mom and dad make a sound, and I try to make it too. I sometimes do it perfectly and sometimes not so much, but they say, "Goood try" and so I feel like I'm close so I just keep trying. It's fun.

I'll leave you with me gurgling. Enjoy!

The Worm Crawl

Crawling on all fours is so 2011...

Thankful Thursday: Bikes and Boards

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. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for a moving baby. Mckenna is fully on the move now. She's crawling in and out of rooms, and she's pulling up on every piece of furniture, wall, door, etc. It is incredible to watch. She is so curious. She is so content. She is so proud. And best of all, she is so tough and brave. She falls, and she rarely cries. When she's standing, she sees something she wants and goes for it. Having a little girl so tough and fearless may make for some bumps and bruises when she's a youngster and some big mistakes when she's a teen, but it will serve her well in life. So I'm thankful for a wonderful little girl. I just pray we can protect her some! Ha!

I'm thankful for new bikes. We used to have dinky bikes from Target and Walmart, and let's just say you get what you pay for. We wanted to make sure we rode them enough before investing in nicer bikes. We'll yesterday we both more legit bikes and boy are they awesome. We got a little baby seat for the front and the three of us have already gone on 2 bike rides since 5PM yesterday. Mckenna loves her seat, and we love getting out as a family.

I'm thankful for smoothies. We've been having a smoothie every day for lunch and they are AWESOME! Grab a blender, yogurt, and fruit (fresh and/or frozen) and you will not be sorry!!

Ronnie's List:

I'm thankful for bike rides. Mandi and I recently purchased new bikes after our cheapy bikes from two years ago just couldn't hold up anymore. Considering it would have cost us half of the value of the bike to get it back in working order (not including materials), we decided it would be a wiser decision to invest in bikes that will last longer. Considering we ride bikes almost daily, it seems like a good choice!


I'm thankful for professionals in the CF community that view us as more than a job. I had the pleasure of working and hanging out with a great doctor from Boston this weekend that reenergized my faith in CF doctors. Not that I was losing a ton, but I do hear plenty of bad stories of docs out there. Anyway, Dr. Ahmet U. out in Bean Town is quite an exceptional man. He cares, he's focused and he won't quit until all of his patients outcomes are improved.


In the same light, I'm thankful for the CF Taskforce. I'm blessed to be able to serve on a board at my hospital whose main goal is to make the experiences between the CF community and doctors, nurses and the hospital in general, even better. I feel honored to be able to bring a patient perspective to the table and just hope I'm representing all of my friends well.

So, what are you thankful for today?

There Will NEVER Be a "Perfect Time"

I got cut a bit short on my blog yesterday when Mckenna woke up from her nap, but I wanted to finish up about the themes that were running through my time in Boston. If you don't know why I was in Boston, or what the first major theme was as it relates to being successful in this (CF) life, please check out yesterday's blog.

Another common thread that tied most of us together weekend was the full belief in personal responsibility. I didn't hear people blaming CF. I didn't hear them saying it was "impossible" to get all of their treatments in. I didn't hear them give reason upon reason as to why they would get sick at times, if they knew they weren't doing everything possible that they could do to stay healthy. Instead, what I heard was peeps talking about "controlling what you can control" and "making sure that at the end of the day you could be proud of your effort". And hearing stuff like that was certainly like a sweet symphony in my ears.

I've always been a big believer in personal responsibility. Now, I'll be the first to admit that it hasn't always bled into my CF life, but in everything that didn't have to do with CF, I was never an excuses kind of a guy. There was a time when I fell for the classic CF tricks like "I don't have enough time" and "I can't possibly handle anymore treatments", but fortunately, I was able to see the error of my ways after a very close call and 52 days in the hospital. Since that "little" episode, I have taken up the flaf of personal responsibility in the area of my health as well. I knew after that crazy time in my life that all of the little excuses I was making and all of the tricks I was falling for were going to get me nowhere but dead. And frankly, dead is not where I wanted to be.

The thing is, if we wait around for the perfect time to give our max effort, it's never going to happen. I can still give you plenty of reasons why I can't exercise. I could go on for days about how inconvenient my treatments are. If I waited for a time in which I was not tired to exercise, or free from pain, I'd never see the gym.

Here's a recent example...I took the red-eye flight from Phoenix to Boston. I left Phoenix at 11:45pm and landed in Boston at 7:35am. I maybe slept for three hours on the flight. After arriving at the hotel, I did three things, and in this order:

1. I went to Dunkin Donuts to get some coffee
2. I did a treatment set
3. I went for a run

Now, was I tired? Yes. Was I not feeling on top of the world as a result of the flight? Yes. Did I want to run? Nope. There wasn't anything in me that wanted to run. So why did I do it? Because the days that I run, I feel better. Because I didn't run the day before. Because I said that I would when I left Phoenix. Because I want to live and live well. Because nobody else can run for me.

Point is, we often do things that we don't want to do. The thing is, it's doing everything to take care of ourselves that will put us into position to do more things that we want to do and do them well. With better health can come better life. I didn't fully believe that in the past. I thought I was having the time of my life back in the day, but little did I know that that life was slowly killing me. Now, with a refocus on health and personal responsibility, it feels like I'm living more than I ever have - and it feels great!! 

What about you? Are you doing everything you can do to put yourself in the best position to succeed each and every day?

A Common Theme

This past weekend I had the privilege of spending some time in Boston after being invited to lead a break-out session and serve on a Q&A panel. My cyster in Boston, Beth Peters, organized the entire event and did an absolutely wonderful job. The theme of the event was the "Power of Two In YOU" and starred both Ana and Isa from the documentary The Power of Two. Which, by the way, if you haven't seen it yet, I would highly recommend finding it on your on-demand cable service and checking it out. It's the only "CF" related movie/documentary I've ever watched, and I'm certainly glad that I did. It does a great job of shining a light on the great need for organ donations both here in America and worldwide. I think what I most enjoy about the film though is that the overall tone isn't one of despair and anger. Ana and Isa had some very rough times in their CF journey, but never once do you feel like they're a victim. So anyway, if you're up for it, check it out.

**And parents of young ones, just remember that the disease that Ana, Isa, myself and so many of us old-timers faced when we were young is almost a completely different disease than it is today. I mean it when I say "It's a great time to have CF!"**

I also had the opportunity to stay up real late the night before the event (Saturday) and just chat with Ana and Isa. I came away with two thoughts: We're cut from very similar cloths and I like them more every time I get to hang out with them. We of course chatted about CF, our journey and life in general, but we also spoke about what we saw happening in the CF community - both now and in the past. Throughout our entire conversation, two themes seemed to be constantly at the forefront: Personal responsibility and the parents role in our (CF) life.

I know that I stress it quite a bit on this blog, but I can't stress it enough. It will always and it has always started with the parents. Ana, Isa and myself grew up in homes where treatments were done no matter what, rain or shine and without question. There simply wasn't a choice in the matter and we knew it. We also thought our moms were extremely mean at the time, but we all agreed, that without them, we'd be dead. Very few kids will choose to do their treatments. And as parents, if you're waiting for your son or daughter to "take control" of their own health before they leave the house, you may be waiting for a long time. Doing my treatments was a condition for living in my mom's house. She made it very clear from early on that there were certain things I was going to do if I wanted to enjoy having the privilege of being in the home, and at the top of the list was treatments. Now, would she have kicked me out of the house and onto the streets at 8 years old? No, but she did hold a pair of scissors in one hand and the power cord to my Nintendo in the other when I refused to do treatments. In short, she figured out ways to "motivate" me.

Ana and Isa's parents were very similar. They had no choice but to take care of themselves as long as they were under their parent's roof. And as we talked about the community, we all said that when we see other parents take similar approaches - whether or not there is the "mean" component - that we generally see healthy CFers. Bottom line, you parents have one job and one job only as it relates to CF: Do whatever you have to do to make sure that your child does ALL of his or her treatments. Doesn't matter how you get it done, as long as you do.

I was going to write about personal responsibility, but I think that's going to have to wait until tomorrow. Mckenna just got up from her nap, and it's my responsibility to hang with her write now :)

So check back tomorrow about how personal responsibility plays such a major role in the life of an adult CFer.

Happy Fatherless Day

Well that title just sounds depressing, but I promise this is a happy post! Ha! I don't have some crazy daddy issues that I am going to lay out here or anything. In fact, I have one of the best fathers on the face of this earth!! My dad set a perfect example for the man I needed to marry, and honestly, I kinda married my father in a lot of ways - scary! My dad is a man of incredible character. He has excelled in his career, but he has excelled even more at home with us kids. He's had to juggle a lot with work and being a great dad, but he did it so well. And now I have the joy of watching him as a grandad, or Papi, as we are calling him.

I have also acquired two new dads. Ronnie's dad and stepdad are great men who I love dearly. The fun part is that they are both different from my dad, so I get to have 3 unique dads! All totally awesome in their own ways!

But anywhoo, back to my original post...I'm getting sidetracked, which generally happens and my stories go on wayyy longer than they need to. In fact, this is a weakness my dad tried to work on with me from the time I started talking. He lovingly (and I'm sure deep down annoyed) would encourage me to cut to the chase. But again, I'm getting sidetracked...

So "fatherless day?" you ask. Yes, fatherless. Yesterday, Ronnie's first father's day, he was out of town, in Boston, to speak at an event. I was hoping he wouldn't realize it was father's day and when he got back say, "surprise!" and celebrate it today. But that didn't happen. He mentioned it on Saturday on the phone. He followed, "tomorrow's father's day," with "I got a bit choked up when I realize." "AW I'M SORRY," I said. "I'm totally messing with you. I'd be sad if she knew what was going on," he said. Ha! I love my practical husband!! But never-the-less I felt a bit bad that he was going to miss his first father's day. So I set out to do something sweet for him.

I found an idea online where you take a picture of your kid(s) holding the letters D-A-D and then put all the pictures together to spell DAD. So I decided to try it. Silly, silly mom of a spastic, active, 8-month old. Two words: epic FAIL. When she wasn't crawling away, she was barely interested in holding the letters. And when she was holding the letters, she rarely held them that you could actually read them. Mix that with a less than quick to push the picture taking button and you have a total disaster. After 3 separate attempts, I decided whatever we had would have to do and uploaded the photos onto my computer. I soon realized that the backgrounds all should be the same, and unfortunately for me, I didn't do the 3 separate shoots in the same spot. And one of the shoots had all different backgrounds because she kept moving so I'd plop her back down and shoot. So I had several decent photos, but none with the same background. I finally just picked 3 of the best ones with the same background and put it together. I wanted to just be done with it, partly because I wanted to email it to Ronnie yesterday morning and partly because I was so over the whole thing. Here's how it turned out:

Anywhoo, it was probably the best way Ronnie could have spent Father's Day. "Why?" You ask. Because, you see, since he wasn't here and I was on single momma duty, it made me appreciate him that much more. Thank you, honey, for all you do for me and Mckenna. Life is awesome with you around!! Mckenna couldn't have a more loving, special, funny, and fun daddy.