Saturday, July 28, 2012

Worst Hospital Design Features


Recently ran across this article and thought we all could relate in so many ways...

The Ten Worst Hospital Design Features: A Family Member’s Perspective


I just spent the last 8 days in the hospital, at the bedside of a loved one. Although I squirmed the whole way through a tenuous ICU course and brief stop-over in a step-down unit, it was good for me to be reminded of what it feels like to be a patient – or at least the family member of one – in the hospital. The good news is that the staff were (by and large) excellent, and no major medical errors occurred. The bad news is that the experience was fairly horrific, mostly because of preventable design and process flaws. Having worked in a number of hospitals over the years, I recognized that these flaws were commonplace. So I’ve decided to tilt at this great hospital design “windmill” on my blog – with the hope that someone somewhere will make their hospital a friendlier place because of it.
Most of these design and process flaws have one thing in common: they prevent the patient from sleeping. In some circles, sleep deprivation is an organized form of torture reserved only for the most dangerous of terrorists. In other circles, it is hospital policy. And so, without further ado, here is my top 10 list of annoying hospital design flaws:
#1: False Alarms. Every piece of hospital equipment seems to be designed to beep for a complex list of reasons, many of which are either irrelevant or unhelpful. I snapped a photo of a particularly amusing (to me anyway) alarm (see above). This was a bed alert, signaling the “patient exit” of an intubated and sedated gentleman in the ICU. Not only was the location of the alert sign curious (if you could get close enough to the alert screen to read the text, you would surely already have noticed that the patient was AWOL) but it was triggered by mattress pressure changes that occurred when the patient was repositioned every 2 hours (as per ICU pressure ulcer prevention protocol).
The I.V. drip machines are probably one of the worst noise pollution offenders, beeping aggressively when an I.V. *might* need to be changed or when the patient coughs (this triggers the backflow pressure alarm, leading it to believe that a tube is blocked). Of course, I also thoroughly enjoyed the vitals monitor that beeped every time my loved one registered atrial fibrillation on the EKG strip – a rhythm he has been in and out of for years of his life.
#2: Intercom Systems. Apparently, some hospital intercom systems are wired into every patient room and permanently set at “full volume.” This way, every resting patient can enjoy the bleating cries for housekeeping, tray pickup, incoming nurse phone calls,physician pages, and transport requests for the entire floor full of individuals undergoing the sleep deprivation protocol.
#3: The Same Questions Ad Nauseum. Over-specialization is never more apparent than in the inpatient setting. There is a different team of doctors, nurses, PAs, and techs for every organ system – and sometimes one organ can have four teams of specialists. Take the heart for example – its electrical system has the cardiac electrophysiology team, the plumbing has the cardiothoracic surgery team, the cardiologists are the “minimally invasive” plumbers, and the intensivists take care of the heart in the ICU. Not only is a patient assigned all these individual micro-managing teams, but they work in groups – where they rotate vacations and on-call coverage with one another. This virtually insures that the sleep-deprived patient will be asked the same questions relentlessly by people who are seeing him for the very first time at 20 minute intervals throughout the day.
#4: Inopportune Intrusions. There are certain bodily functions that benefit from privacy. I was beginning to suspect that the plastic urinal was attached to the staff call bell after the fifth time that someone summarily entered my loved one’s room mid-stream. Enough said.
#5: Poorly Designed Tubing. Oxygen-carrying nasal cannulas seem to be designed to maintain a slight diagonal force on the face at all times. This results in the slow slide of the prongs from the nostrils towards the eye. Since the human eye is less efficient at absorbing oxygen than the lungs, one can guess what might happen to oxygen saturation levels to the average, sleep-deprived patient, and the resulting flurry of nursing disturbance that occurs at regular intervals throughout the night (and day). My loved one particularly enjoyed the flow of air pointed directly into his left eye as he attempted to rest.
To see the next 5, continue reading the article here.

I'd say they nailed it. What do you think?

Friday, July 27, 2012

Mckenna Chowing Down

Just a typical day of feeding the beast...











Thursday, July 26, 2012

Thankful Thursday: New Things & Morning Ritual


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 baby with personality. Mckenna is such a little bundle of personality already. From waving at every person in public places, to making noises that make us laugh, to dancing any time music (or anything that sounds like music) is on. I love it.

I'm thankful for family time. My parents were in town for a month and have now left. I loved getting to spend time with them, and getting to watch them with Mckenna. I have two of the most incredible parents in the world. They are both so fun, funny, loving, and awesome!! I can't wait til they move back for good one day!!

I'm thankful for my hubby and his willingness to try new things. Ronnie was willing to try some new classes at the gym and we've had SO much fun. Plus, class is much more awesome when I get to look over at my sexy hubby with his muscles flexing and working hard! Hehe :)


Ronnie's List:

I'm thankful for our morning ritual. When Mckenna first wakes up in the morning, around 6am, Mandi is the one to tend to her as we are still breastfeeding. After Mckenna is down however, Mandi reports that Mckenna starts saying "da da da da" and looking around for me. After awhile, Mandi brings Mckenna into our room and we have a little family snuggle time while Mck plays with my oxygen tubing. It's awesome!!

I'm thankful for Yelp. If you don't know what Yelp is, check it out at Yelp.com, but it's basically a good way to find peer-reviewed restaurants, stores, dentists, etc. I use Yelp almost anytime I'm picking a place to eat; I've found our "bug guy" through the site; I found our dentist through Yelp. It's very rare that the Yelp community leads you astray.

I'm thankful for Thankful Thursdays. It's very rare that I just slow down and ponder something. But every time we write about what we're thankful for, it gives me the opportunity to just take a deep breath, reflect and be still. Nice little 10 minute break :)

So, what are you thankful for today?

Wednesday, July 25, 2012

Workouts Get BORING


Let's face it, if you get to the gym with any kind of regularity, the workouts you do quickly become rather monotonous. I know for me, it usually at about the 6 week mark of doing the same workout routine that I'm ready for a new one. In fact, just the other day, I overheard a "TV trainer" say it's wise to switch up your routine every 6 sessions or so to avoid muscle memory and/or just going through the motions. And with all of the new workout crazes that stress "muscle confusion" and a host of varying movements. I'd say that it is pretty sound strategy.

With this in mind, I've recently ventured into something new at our gym (with a little coaxing from Mandi of course). The past couple of weeks, we've been giving group classes a shot. 

Leading up to this point, I was never really interested in the group class setting. Here were my reasons:

1. The classes are generally full of women, and consequently
2. All of the men in the gym are lifting weights
3. Seemed to be pretty cheesy
4. Intimated by the constant movement
5. Figured my two left feet wouldn't be great for all of the different steps
6. Did I mention that classes are for women?

So as you see, it's not as if I had some slam-dunk reason as to why I never gave the classes a shot. I did however need a little bit of a push by Mandi to actually give them a chance.

I'm glad she pushed.

We started with a class called Body Pump which is essentially a full-body workout using barbells and hand weights. It's set to various music tracks and focuses mostly on form as well as varying repetitions, positions and movements. It all feels pretty good, except for the leg portion of the class. It's crazy how weak my legs have gotten. Half way through the class I couldn't have the slightest bend in my knee without my legs shaking. I felt Body Pump for a good 3 to 4 days after my initial class. If you saw me, you would have thought that I rode in on a horse.

Yesterday, we gave Body Combat a shot. This is a high energy class that has you throwing jabs, uppercuts, hooks and various kicks for about an hour straight. I couldn't believe how much I was sweating just after the "warm-up" had taken place. I was coughing up storm and may need to look into a mucus bucket to bring with me next time. :)

Anyway, what's the point of this blog? Well, if you find yourself "going through the motions" with your exercise routine, switch it up. Don't be afraid to challenge yourself. Don't be too uncomfortable with change. Get out there and try something that you've never done before. Whatever you decide to do, give it a fair shot and don't second guess yourself. Just go for it!!

I'll be the very first to admit that I was skeptical about changing up our lifting routine. I'm just so very thankful I did...even if I did "kick and scream" a bit on my way to the first class. 

Tuesday, July 24, 2012

Are You a Dream Cheerleader?

Mandi had a great post yesterday about dreams not coming true when looking at it from our perspective, yet still living the dream since we aren't the ones in control. If you didn't get a chance, you should really check out the post, it's a good one!

It got me thinking back to my childhood, my dreams, and how my parents fostered that "dream for the stars" mentality in me.

If I were to hone in on one point for this blog however, it would be this - Parents, you should be the biggest cheerleader ever in the dreams department.

It's funny, when I was young (confession time), I wanted to be a lung specialist. I mean, it makes sense right? I was around hospitals all of the time. I could handle all of the jargon that was thrown around. Blood and guts have never bothered me. I was always talking with pulmonologists. And of course, I was for sure going to cure CF one day :)

Now, my dream occupations changed from time to time, but I would generally always land back on being a doctor. In my younger years, I was very vocal about this dream.

It's important to point out that this was also a time in which they were figuring out that we CFers really shouldn't be around each other. It was also a time in which very few CFers attended college, and of those that did, very few graduated. CFers who actually were doctors? Well that was obviously few and far between.

I didn't care though. I was going to be different. I was going to buck the trend and be the first CF specialist with CF that exclusively worked with CF patients. Knowing the time and the situation, you would have thought that my mom would have been "the bearer of bad news" or in the very least realistic with me. Nope, she wasn't. She was my cheerleader, just as it should be.

Growing up, my mom never uttered the words "Ronnie you can't" when it came to my dreams for a future. Talk of college, career, marriage and babies were had on the regular in my house. It was never if those things were going to happen, but when.

Did my mom actually think that I was going to be able to fulfill all of my dreams? Who knows. Better yet, who cares?!?! The important thing is that she raised me to be a believer. A believer in hard work, commitment and personal responsibility. She raised me to chase my dreams in-spite of CF. She raised me to chase me dreams because of CF. My mom convinced me at a very young age that my formula for making my dreams come true was the same formula that my friends used. Surprise! CF had nothing to do with it.

So, did I become a doctor? Not even close. But do I appreciate my mom for knowing that I could have been one if I would have chosen to pursue that path? Absolutely.

You see, our children are no more worse for the wear if you encourage them to chase their dreams and they still fall short or choose another direction. It's more important to us that you believed in our dream as much as we did. We don't need everything to fall into place exactly as planned to be "living the dream".

We do however need a dream, and we need a dream cheerleader. Are you up for the job?

Then grab some pom-poms and let's get to work!!

Sunday, July 22, 2012

Real Life Fairy Tales

Anyone else watch The Bachelorette season finale last night? I am a HUGE Bachelor and Bachelorette fan. I don't know if I've ever missed a season (which says a lot because I think it's been on since I was born, right? Ha!) Even though it seems to never work out long term with those couples, I am just such a sucker for fairy tales, so I watch season after season. I love love. I love watching love stories. I actually just love watching happy moments in people's lives. It's inevitable that I cry during every proposal I see, whether it's on The Bachelorette or YouTube. I also have cried at every birth I've ever watched on TV (which is a lot because I'm a TLC junkie). I just absolutely love happy endings. I love watching people's lives unfold (must be why "reality" TV is our favorite).

But my feeling after watching this Bachelorette finale has been different. Sometimes when you watch stuff like that you think, "man, I wish I could relive that moment in my life," or "Gosh I wish I could remember more vividly that time." It always seems so perfect. Like a fairy tale that never exists in reality. But for some reason I didn't think that at all. I couldn't help but feel so blessed for where we sit today. Our life isn't what I used to picture as "a fairy tale". In fact, being married and a mom is what I pictured, but beyond that my life looks different. The big stuff is different than I pictured. I didn't picture living in Arizona. I didn't picture being married to someone with a chronic illness. I didn't picture getting pregnant in a room full of people. I didn't picture my parents living far away. I didn't picture having to work instead of being a stay at home mom. The little stuff is even different. I didn't picture running on little sleep, even with a 9 month old. I didn't picture being a terrible house keeper (yeah, I'm not good about cleaning since Mckenna came along). I didn't picture my life as it is today at all.

But man am I glad that God is in charge of how my life looks today, instead of me. My life may not be "perfect", but it's perfect for me. Ronnie and I note how blessed we are several times a week, and generally the comment is made during or after a situation I never would have picked for myself. A perfect example is my little night monster. We haven't blogged a ton about it, but Mckenna isn't a great sleeper. She never has been. She still wakes in the night, whether it's to eat (although I just re-weaned her...yes, RE-weaned...it's been quite the process) or just to cry for a few minutes before falling back to sleep. Her sleep has been such a cause of anxiety for me. I actually used to have serious anxiety every night after putting her down, anticipating the long night I was going to have ahead; trying to push aside hopes of a good night because usually it wouldn't meet my expectations. I still have some anxiety. I certainly never pictured that night time would be such a battle, filled with hours each night (yes, HOURS) in a glider with Mckenna for months upon months. I would be lying if I didn't look at other people's "perfect" sleepers with envy most days. But I'm so blessed to not have it MY way. God gave me Mckenna HIS way. God blessed me with hours each night of quite time, alone, with my daughter. My daughter who never sits still, who's always too busy and active to want to me held and snuggled in the day. God blessed me with snuggles in the stillness of night, just me and her. Calm. Cozy. Bonded. And while I'm a bit exhausted now, I am certain I will look back and miss those nights, and see what a picture perfect real life fairy tale they were.

This is just one example in a series of hundreds. Everything in my life, whether I realize it or not at this moment, is just as it should be. My life is full of uncertainty. Everyone's is. And I often struggle with that. I'm a planner. I'm a control freak. I have pictured all these things that will never come to fruition. But what I have just realized, is that my biggest blessing in life is that many of my dreams will never come true. My dreams are not what's best for me.

My fairy tale lays in God's plan for my life.

Friday, July 20, 2012

Just Another Giggling Video

Thursday, July 19, 2012

Thankful Thursday - Teeth & Salmon


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 teeth...kinda. I'm thankful that Mckenna is getting some teeth. She has an adorable little one on the bottle left and is working on the one on the bottom right. It is SO cute to see a little flash of white when she smiles now. I am just so thankful that I get to watch her become a big girl. The only catch is that it's been a couple long days around here as a result - in fact, I'm writing this at 4 AM!

I'm thankful for family. My parents are still in town and I can't get enough!! I love spending time with them and wish they didn't have to go back to Singapore on Saturday.

I'm thankful for new recipes. We made salmon the other night and it was delicious. I totally love when we try new recipes and they actually work out and become a new favorite. I'm also so thankful that we are blessed enough to be able to get good, healthy foods!


Ronnie's List:

I'm thankful for a good sized dining room table. When we were buying furniture and stumbled upon our dining room table, we figured that they had placed the wrong price tag on it. Compared to everything else that we had seen, it just seemed to big and nice to be as cheap as it was. Ends up that it was no a mistake and we were able to pick up a table that can seat 8 comfortably with the ability to add at least 2 more with the leaf. 

Speaking of the dining room table, I'm thankful for family dinners. Wether it's just the three of us, or we're fortunate enough to have family over, we love cooking up a great meal and sitting down around the table. We recently cooked up salmon, quinoa and corn on the cob for Nana, Uncle Smeags, Uncle Josh and Aunt Kissy. 

I'm thankful for 10 minute tidies. We've been trying to be better about picking up after Mckenna goes down for the night, and it's amazing what a 10 minute tidy can do. Granted, it's 20 minutes of man-power, but nevertheless, it makes a BIG difference. There nothing like waking up to a picked-up house...even when you know it won't look that way 2 minutes into the day :) 

So, what are you thankful for today?

Wednesday, July 18, 2012

Are You Selfish? I Hope So!!


When most of us think of being selfish, we think of only doing activities or making decisions that benefit us personally. However, I'd like to look at it from another way today - maybe we're being selfish by not putting ourselves first when it comes to our health? Allow me to explain.

Actually, let me back track just a bit and share with you the note that a friend wrote me that spurred on this blog...

"I just wanted to say THANK YOU for the blogs you do. I was reading a lot of them today and it was a real eye opener. By reading them made me realize that its time for me to have "ME" time. I need to do EVERYTHING that I am capable of and control of in order to stay healthy. Thank you Ronnie! :)"

So when you read that, what do you think? Does saying "time for me to have "ME" time" sound selfish to you? I can certainly understand if it does, but to me, this is one of the most selfless statements you can make. Notice what she said after that statement - "in order to stay healthy". That my friends is what this is all about and why many of us need to rethink what is selfish and what is not.

I happen to know that the person who said this has a loving family, a ton of friends and a husband who wants nothing more than the best for his wife. When we have that many great people around us, it's hard not to think that the more time we spend with them, the more we are showing that we love them. But here's the question, and one I would suggest asking your loved ones, is it better to be "around" with your family, or would they rather have you "there"?

I would bet that most families out there would answer this question the same way. It's great to have us around, but man, they absolutely love it when we're actually there, healthy and engaged

I used to think I was quite the family man because I was able to spend so much time with my brothers, parents, cousins, aunts, uncles and everybody in between. Heck, I had so much time on my hands that I was also able to always be around friends, poured myself into work, volunteered at church, volunteered at the homeless shelter, went on a few dates, spoke at some fundraising events - it really seemed that I was squeezing everything there was to squeeze out of life.

I was making a big mistake however, all of that "life" was coming at the expense of my health. All of those things I listed came before my treatments on the totem pole of importance. I thought I was showing everyone how much I loved them by always being around and giving them my time, unfortunately, I had little time to love myself.

So given the choice, would my family and friends choose for me to be sick and around or healthy and there? Wish I would have seen it so clearly at the time, but I was being way too selfish by not being selfish - they would MUCH rather have me healthy and there, even if it meant I wasn't there as often.

I hear people say that you have to "want it for you". Nope, you don't. You just have to want it bad enough for someone, wether it's you or not, that you're actually willing to make a change.

That someone for me was and is Mandi. I have become much more selfish with my time since we met, and she wouldn't have it any other way. In fact, she demands it. She knows first hand how things were when I didn't put my health first - it wasn't pretty for her and it wasn't pretty for me.

So I challenge you, start being selfish when it comes to your health and the time you spend on some "me". 

In the end, that "selfish" act may be the most selfless thing that you ever do.

Tuesday, July 17, 2012

My CysticLife "Job"

Here's another question I get asked quite a bit, and until now, have kept the answer between me and the person asking the question. I figured that it's asked enough though that I should just put something here on RSBR in case any of you are wondering the same thing.

I always hesitated talking about this publicly, because I don't want any of you thinking that I'm somehow self-promoting or asking you to give me a pat on the back. I don't want any of you however ever to think that I have any financial interest in bringing CysticLife to the community and want to make clear my motives - to make an immediate impact on the lives that were born with the same genetic disease that I was, no more, no less. Anyway, hope this clears some stuff up for some of you.

For you. CL is your "job" even though I feel sure you don't look at it this was. How do you make money from this? Do you take donations ? I'm sorry if too personal. You help so many with all of your knowledge and your responses are so quick - I was just wondering if donations are what keep it going?? 


CL is my "job" in that I devote well over 40 hours a week to it, but I do not make a single dime. In fact, my family "lost" money last year running CL.

CL has a for-profit arm (the website) and a non-profit arm (grant program and educational materials). Every dime we make through the website, promoting surveys, videos, etc, goes directly to our web developers salary. If we don't generate enough business to cover his salary, then we cover it.

For our non-profit arm, 100% of the money taken in goes to support our educational materials and grant program. We don't even allow any of the money to be used to run CL. We do take donations, however, due to an issue with our 501c3, we've had to freeze that for now. I pray we will be back up and running shortly.

Most of our donations came from private donors who appreciated what we're doing. I'm hoping that continues so we can continue supporting the CF community.

Monday, July 16, 2012

Mckenna Monday: Fun Weekend with Nana and Papi

This weekend we stayed at this house that I recognize, but it's not my own house. Two super cool people live there. Their names are Nana and Papi. I'm pretty sure they are my mommy's mom and dad, because Nana looks just like a mommy, and Papi looks just like my Uncle Josh. And that's how it works right?

I love getting to spend time with them. They are both so fun. Nana looks and sounds like my mommy, plus she does lots of things that my mommy does, so I warm up to her really fast. She makes lots of goofy faces, and does lots of funny things, so I laugh at my Nana more than anyone else. She also talks to me a lot, so I talk to her a lot. It's fun. I tell her stories and tell her all about what I'm doing. She also lets me try yummy foods. She likes lots of sweets, and if I look at her with my big blue eyes and get real close to her, she will give me little tastes. Whenever I can I crawl over to her and say hi! I kind of have figured out how to say "nana" but it sounds a little like "nini" I can't quite get it down.

My Papi is super cool too. He is really goofy also. He makes all sorts of fun faces and sounds. One of my favorite things about Papi is he has this fun toy that he lets me play with. It's this flat, rectangle thing that has a screen. I think it's called an iPat or something, so I pat it a lot. He has all these fun things on there that have animals and they make noise and when they make the noise, he makes the noise and we both really like it. He also takes me on adventures around the house. He carries me around the house and shows me all sorts of fun things.

I really like being at their house. There are so many things to explore and fun things to get into. They have a big bathtub outside, which is cool. I guess when you take baths outside you wear a special outfit, instead being a "nakey girl" as my mommy and daddy say when I'm in the inside tub. Plus, the water is colder in the outside tub than inside. But I like the outside tub because it's so big, and I get to float in this big lady bug and Nana and Papi, mom and daddy, and Uncle Josh and Aunt Kissy all play with me in their special outfits.

Well, I gotta go play with my elephant. It has balls that shoot out.

Friday, July 13, 2012

Who needs a walker??

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


Thursday, July 12, 2012

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?

Wednesday, July 11, 2012

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?

Tuesday, July 10, 2012

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.

Friday, July 6, 2012

One Man Wrecking Crew

Thursday, July 5, 2012

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?

Wednesday, July 4, 2012

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 :)

Tuesday, July 3, 2012

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.

Monday, July 2, 2012

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!!