Saturday, December 24, 2011

If this doesn't get you in the Christmas spirit...

....nothing will :)

Friday, December 23, 2011

Moganko For Cystic Fibrosis Awareness

In the mood to not only be entertained today, but also educated? Good, you've come to the right place!! Allow me to introduce you to Moganko. Moganko is a buddy of Josh from Joshland and his job is to spread awareness of Cystic Fibrosis, as well as show kids (and adults) that living with CF can be full of fun and laughs. Please watch the following video and then head over to to check out a TON of other cool videos that will entertain AND teach your kiddos some great lessons about life and CF.

Now following the following link to support this incredible project and give my fellow fibro Josh some love...and you can say hi to Moganko too :)

Moganko For Cystic Fibrosis Awareness: Welcome Everyone!

Thursday, December 22, 2011

Thankful Thursday: Zoos & Home Depot

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 holidays. My parents just got back into town for Christmas so we get to spend time with them, the house is decorated for Christmas, I eat at least 5 mini candy canes a day, Starbucks has a special Carmel Brulee latte, and everyone is especially nice and filled with holiday cheer. I LOVE everything about the Christmas season :-)

I'm thankful for my sweet baby girl. I love her so much. Her every smile, coo, squeal, you name it, make me smile. She is such a doll - so sweet, happy, silly, and smiley. It's amazing to watch her grow. Each day I love her more and sometimes find myself just staring at her (generally while feeding her) and wondering how we got so blessed and why God chose us to be the parents to this little peanut. This may be weird, but sometimes I just want to squeeze her...but I refrain.

I'm thankful for girlfriends...and girlfriends with babies Mckenna's age. Yesterday we went to the zoo with my friend Angie, who has a little girl, Harlow, that is 4 months old. We bought a year membership, so we are going to start having our weekly get togethers there, so we can get a little fresh air and exercise while we chat. Angie and I get together weekly with the girls to hang out and swap baby stories (every notice once you have a baby you find it hard to find other things to talk about?!) I can't wait for Mckenna and Harlow to get a little older so they can start actually playing together instead of just looking at each other.

Ronnie's List:

I'm thankful for the Phoenix zoo. I've been living in Phoenix for almost 7 years now yet I had never been to the zoo until yesterday. I'm no zoo connoisseur, but I'd have to give the zoo high marks for it's walkability. A few of the animals were pretty cool to see, like the mountain lion, giraffe and baboon, but I mostly enjoyed the nice relaxing walk around the grounds.

I'm thankful to have a Home Depot so close to the house. It's so nice to be able to hop in the truck and be to HD in a matter of minutes. I'm not the most handy guy in the world, but having that place so close definitely serves as a security blanket during projects. If I don't know exactly what to do, which is generally the case, I can usually find someone at HD who does!

I'm thankful for bath time with Mckenna. One thing that I look forward to everyday is bath time with my little girl. Mckenna totally relaxes during the bath and is usually in the mood to interact and smile at her daddy. It's definitely a time with her that I greatly cherish. 

So, what are you thankful for today?

Wednesday, December 21, 2011

Ever Have One of Those Days?

You ever have one of those days? I can see all of you throwing up your hands right now saying “Uhh, YEAH!!!". And for those of you who don't know what I'm talking about - I'm talking about those days where you're running around like a chicken with its head cut off and just when you think the day is winding down something pops up. The days when you're at the post office and decide to use the self-service machine to “save time” and the woman in the front of the line decides to use said machine to get all of her postage and stamp each one of her Christmas cards individually. Yeah, that kind of day. The kind of a day where all you want to do when you get home is kick off your shoes, put up your feet and just hang out. The kind of the day that the thought of doing something active at the end of it makes you want to cringe. Do you guys know what kind of a day I'm talking about now?

Yesterday was that kind of day.

All day I knew that at some point I was going to have to get my butt to the gym. It was tough to get done everything else that I needed to get done, including treatments, but gym time felt like it was looming over my head. I made a commitment to myself and to my family that I would make my health my number one priority. A big contributor to my increased lung function and energy has been consistently getting to the gym. It's not that I love being there, I actually love leaving the gym, but I know it's what I have to do if I want to be the best version of myself. Still, there are days like yesterday. The kind of a day that even a priority in your life seems just too hard to accomplish.

When I finally got home from running around the city, the first thing I did was love up on my family. It was probably a little bit of a stall tactic on my end thinking that the further off I put the gym maybe it would go away. I asked Mandi what our plans were for last night (take note guys) and she responded with, “you're going to the gym”. I love that woman. I felt guilty about being gone a good part of the day and even when I was home not really “being” there, but Mandi made me feel at peace with it by saying those five words. It's so nice to have a supportive wife that is willing to recognize how important it is that my health needs to be our family's priority. Admittedly, it makes my life about 1000 times easier. And it's not something that I think we can expect out of our spouses either, it should be, but sadly it often times isn't. I think communication was key and is key for us in terms of setting priorities for our family. Mandi made it very clear that she wouldn't be a nag when it came to my health, but she also made it very clear that she would kill me if I didn't take care of myself (Duly noted). That made setting my priority pretty easy. Oh yeah, I did in fact make it to the gym and I had a very good workout.

I guess my main point of this blog though is to encourage you guys to not only put your health as your number one priority, but to be willing to do anything to be the healthiest version of yourself. This doesn't have to just be for CFers either. To you parents, start right now with instilling in your child that there's nothing more important than their health. Without good health, we don't have much. And we must make taking care of ourselves the most important thing in our life.

Don't want to start with health? That's fine. Here's my challenge for you. Do something today that you've been putting off. It could be cleaning the bathroom, running errand, doing an extra treatment or finishing a school paper, whatever it is, promise yourself that you'll get it done today. Because here's the thing -  both you and I know that once you do it, you won't regret it.

Tuesday, December 20, 2011

Landscaping Troubles and Cystic Fibrosis

Mandi and I had been talking about buying plants for quite some time. We finally brought ourselves to get to a nursery and walked around for about an hour with the worker picking out plants to go in our yard. Like most people, we were really trying to find luscious, green, drought tolerant, freeze tolerant, hardy, beautiful and pleasant on the eye plants to fill up our yard. That's not too much to ask for right? I'm quite green when it comes to all of this yard stuff as I grew up with nothing but typical Arizona landscape. My idea of a yard included a lot of dirt, some pea gravel and a few desert style plants. I had never lived anywhere that had grass I had to maintain nor am I so sure that I knew what a drip system was.

After hemming and hawing over a handful of plants we finally decided on: duranta, fortnight lily, gardenia and agapantha. We were assured that this winter wouldn't be as harsh as last and that all of these plants would be fine if planted right now. I've been putting off planting for quite some time mostly because I had yet to yank out all of the dead stuff from last winter, whoops. While my dad was in town for Thanksgiving he finally gave me the motivation, and help, that I needed to get the job done. Let me just say this right now– I'm so thankful that I don't dig up plants for living.

When it finally came time to plant I woke up nice and early in the morning so I could get a jumpstart on the day ahead. I decided to start in our courtyard as this was the place that was going to require the most digging. There were a couple of spots that I was basically just replanting and those were no big deal, but the places that I needed to dig fresh holes was harder than expected. It is seriously amazing how hard the ground can be in some spots. It's pretty disheartening after digging for 20 min. and getting the hole to a place that you think is deep enough only to put the plant in said hole and see four inches of the root sticking out. Fortunately, I had nothing much going on that day, so I kept digging!

I finally got done in the courtyard (we planted three gardenias and two agapanthas) and it was on to the planters in back. I started with the planter on our North wall. We decided to plant three duranta and try our hand at training them up a trellis. The other task that I was intent on completing was building the beds back up. Over the years they've lost some of their soil to various conditions and it was definitely time to address that situation. I was able to plant the plants fairly easily as there were roses bushes and shrubs there previously, so it was a just a matter of ripping out a few existing roots. After I got them planted I cleaned up the drip lines, threw on some topsoil and followed that by mulch. I must say, it looks pretty good.

Then it was on to the bed/planter on the Northeast side of our yard. There were a few more rose bushes planted there previously which we ripped out when my dad was here. All that was left was the Queen Palms. We decided to throw in some fortnight lilies and an agapantha. After having a fairly smooth and trouble-free time, I was really looking forward to knocking out this project. But as we all know things rarely continue to go smooth in this life, I was up for quite a big challenge. Little did I know how “crazy” and difficult it would get.

To be continued...

Monday, December 19, 2011

Mckenna Monday: Making the Butter

Have you noticed the trend yet? Mandi Monday's come so late that they practically get posted on Tuesday! I used to write my Mandi Monday's on Sunday and have them automatically post Sunday night/Monday morning (shhh don't tell). But days just come and go and then all of a sudden it's Monday morning and I realize I've been a slacker for another week. So since I'm terrible, I'll send in my replacement...Mckenna. Sooo without further ado: Mckenna Monday:

Things are going pretty well for me. I'm getting bigger by the second. Mom says I'm a tank, but they still call me Peanut, so I'm not sure how that all fits together...maybe I'm a small tank? I had my 2-month check-up last Monday. I came in at 10 pounds 2 ounces and 22 inches long. If you're keeping track, that's exactly 4lbs and 5 inches since I was born. I'm growing like a weed! At that appointment I also got some shots. OUCHY!! I let out a huge wail once I realized what happened and that it didn't feel the greatest. Mom looked sad for me and like she was going to be sick, dad smiled with delight and kept saying "oh my goodness your face is so cute when you cry like that."

I'm pretty sure my name is Mckenna because they say it all the time (although they don't know I know because I don't respond to my own name yet). However, they call me lots of other names too. They call me Peanut a lot, which I've heard all along...I didn't hear Mckenna until much later in my life. But they also call me Goosey, short for Silly Goosey, which they call me some.

If there's one thing I'm good at it's making the butter. "Huh?" you probably thought to yourself. Yeah that's what I wondered too at first. My parents just kept asking "are you making the butter baby?" I finally realized that they're talking about going poo poo. Because everytime I dirty my diaper they say, "oh my goodness, did you make the butter? You're so good at making the butter, baby!" I didn't get it at first until I heard my mom explaining it to someone. Apparently mom thinks my poo poo smells like movie theater popcorn butter (you'll never look at it the same again I'm sure)...and it's yellow in color (I guess theirs is something different?) And because I drink milk and it churns in my tummy and then there's butter. So there you have it, mom and dad think I'm a butter factory.

Hm what else? Oh yeah, I've started sleeping like a champ. Bedtime is fun. I know what's coming because we do the same thing every night. I eat, we play a bit, I take a bath, eat again and then it's straight to bed. I go to bed around 9:30-10:30 and I wake up at 7ish. I either eat once around 4 or I just sleep all the way through. On the nights I sleep all the way through I could swear my mom looks like a different person and man is she thrilled to see me. She comes in and sings about what a good sleeper I am. I mean she's happy to see me every morning, but those mornings you'd think I had been out of town for the last week and she missed me like crazy. So maybe I'll start sleeping through the night every night? I'll try my best.

So, that's it. Life is good!

Sunday, December 18, 2011

Inhaled Anti-Pseudomonal Drugs Promising in Cystic Fibrosis Patients

NEW YORK (Reuters Health) Dec 12 - Fosfomycin/tobramycin for inhalation (FTI) is a promising treatment for cystic fibrosis patients with chronic Pseudomonas aeruginosa airway infection and reduced lung function, researchers say.
Their phase II safety/efficacy study tested 28 days of FTI against placebo, immediately following 28 days of inhalation therapy with aztreonam.
Such continuous therapy is not typical. As the authors point out, "a 28-days 'on' and 28-days 'off' dosing schedule is used for inhaled antibiotics that are currently approved in the U.S. for airway P. aeruginosa in cystic fibrosis patients.
But the rationale for the "off" period is being questioned because of changing microbiological profiles and the increasing use of two or more inhaled antibiotics in rotation, they wrote online November 17 in the American Journal of Respiratory and Critical Care Medicine.
Both FTI and the aztreonam inhalation solution are being developed by Gilead Sciences, which sponsored the current trial.
Altogether researchers enrolled 119 patients (average age, 32 years) with a mean forced expiratory volume in one second (FEV1) of 49% predicted at screening.
After the 28-day open-label course of inhaled aztreonam three times daily, patients were randomly allocated to twice-daily FTI (60/40 mg or 80/20 mg) or placebo, for another 28 days.
With aztreonam, the mean improvement in FEV1 predicted was 7.0%. This improvement was maintained with FTI, whereas lung function in placebo-treated patients declined toward pre-aztreonam levels. The treatment effect favoring FTI 160/40 mg was 6.2% (p=0.002) and 7.5% favoring FTI 80/20 mg (p<0.001).
In addition, the researchers found reductions in mean P. aeruginosa sputum density in the FTI 80/20 group versus placebo (p=0.01).
FTI "was also effective against methicillin-resistant Staph aureus, for which there are relative fewer drugs," first author Dr. Bruce Trapnell, of University of Cincinnati College of Medicine and Cincinnati Children's Hospital Medical Center, Ohio, told Reuters Health.
He and his colleagues found that in 13 of 63 patients co-infected with S. aureus and P. aeruginosa, S. aureus could not be cultured from the end of the FTI treatment period (day 28) through the end of follow-up on day 56.
"However, the study was not set up or powered to evaluate this outcome," Dr. Trapnell cautioned. "The data should be considered supportive, but further studies are needed."
Fosfomycin is a phosphonic acid antibiotic active against gram-positive, gram-negative, and anaerobic bacteria. Tobramycin is an aminoglycoside with gram-negative activity.
"Adverse events, primarily cough," were noted, the authors say. Respiratory events, including dyspnea and wheeze, were less common with FTI 80/20 than FTI 160/40. All respiratory events were mild or moderate in severity, and there were no clinically significant changes in laboratory values.
Along with sponsorship by Gilead Sciences, Inc., the study was supported by grants from the FDA and the NIH General Clinical Research Center.
Original article: