Heart Explosion

This video makes my heart hurt, explode and then melt....

Thankful Thursday: Smiles & Talks

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 smiley baby. Mckenna is SUUUUPER smiley. She smiles when you smile at her. She smiles when she's playing by herself. She smiles at you to get you to smile at her. She smiles when you smile at her...even when she's crying. She smiles ALL the time and I LOVE IT. Her gummy little smile is adorable, and my favorite part is that when she smiles big she throws her head back, scrunches her nose sticks her tongue out a bit AND smiles all at the same time!

I'm thankful for more great nights. Mckenna was doing great a couple weeks back at night, and then we had a bad week, and the last few nights she's been doing great again. Two nights ago she went down at 10:15, woke up and ate at 6:30 and then slept until 8:40. Last night she went down at 10:30, ate at 4:30 and was up again at 8:45. I can totally handle that!!! Although, it has now taken me 30 minutes to write this blog because she won't go to sleep tonight, I've re-settled her 3 times now...so we'll see how tonight goes!

I'm thankful for Muddy Buddies. If you don't know what they are, GOOGLE THEM. They're possibly the tastiest treat in all the land :)

Ronnie's List:

I'm thankful for the wonderful weather we've been having. On most afternoons this week, Mandi and I have been going for an afternoon walk or run to crystal blue skies and a temperature right around 70 degrees. I can't believe it's still so nice in January. I'm absolutely loving it right now...just check back with me in August.

I'm thankful for my talking baby. Mckenna is starting to have little conversations with her mommy and daddy and it is one of the cutest things in the world to see. You can tell she really is trying to communicate and the look on her face is priceless. I just need to continue to sharpen my goo-goo gaa-gaa skills.

I'm thankful for 2 great years so far with CysticLife.org. The Website celebrated it's 2nd birthday yesterday, and my oh my does time fly. It felt like just yesterday we were coding that thing and deciding what features were going to go where. Well, 2.5 million hits later, and it still feels like we're doing the same :)

So, what are you thankful for today?

What I Tell Myself...

I think a common myth among my friends and family, and possibly some of you out there, is that I really enjoy working out or exercising. Don't get me wrong, it's not something that I absolutely hate, but it certainly isn't something that I look forward to each day. Generally speaking, I talk myself into getting to the gym or lacing up my shoes to go for a run.

1. You've never regretted going to the gym. Sure, the 10 minutes before I actually get to the gym I go through about every excuse in the book as to why I shouldn't be going, but if I can actually get my butt in the car, it only gets easier. I actually start thinking about what I'm going to do when I get home from the gym even before I pull up in the parking lot, and I've found that can serve as somewhat of a motivation. I find if I can think of at least one thing that I really want to do after my workout, I tend to really push it and get through my workout as soon as possible. This usually means that I am very out of breath while exercising, but for someone who needs to breathe deep, that's a good thing!

2. You always take your deepest breaths while working out. Whether it's from running, doing box jumps or push-ups; I always breathe the deepest during workouts. And as only people with jacked up lungs can understand, man, that feels good! Can anybody out there reading this explain that sensation? You know, the feeling you get when you feel air get to places it hasn't been a while? More often than not, this is the feeling I get when I exercise. So in the regard, exercise is kind of like my drug, because the feeling I get from those deep breaths can't be beat by any narcotic.

3. If you don't push yourself, then shut your mouth. Like that one? One great benefit of having this blog, is that it holds me very accountable. I'll be the first one shouting from the rooftops that exercise is key in our battle with CF. Some people think it's too much and would rather me just shut up about it all, but I believe it in too much to be quite. Not only do I believe in it, but I live it. I've seen the amazing things it can do with lung function, energy and life. If I don't live it out in my daily life, how in the heck can I expect anyone else too?

4. Give 60 minutes for 60 years. Now, does pushing myself each day really guarantee that I'll be able to say that I lived a good 60 years? Of course not. Does it hurt my chances though? No way. It's all about putting myself in the best position to succeed and doing everything that I can to be the very best version of myself. I'm convinced that being faithful with exercise and treatments does just that, so I won't stop until I'm convinced otherwise. By the way, I better make it to at least 60...or Mandi will kill me!!

5. You're not doing this for you. I often hear people say "You've got to want it for you" before embarking on a life of treatments and exercise. Hogwash. The key is to do it, no matter who it's for. Do I love life? Sure. Do I love me? Yup. Do I love Mandi and Mckenna more than me and my little world combined times 1,000,000,000,000? You better believe it. If I'm ever out of energy to get up for the next workout, all I have to do is look my girls in the eye. There is no greater motivating factor on this earth.

So what about you? What do you tell yourself in order to "get up" for a workout?

My compressor: Mobilaire 50 PSI

I get a lot of questions about my compressor, so I thought I would share some answers to those questions...


What type of compressor do you use?


I use a Mobilaire 50psi compressor from Invacare


Where did you get it?


I purchased it from an online durable medical equipment store


Did you need a doctor's prescription?


No


Can you use LC Plus tubing or tubing from other nebulizers?


I only use AeroEclipse tubing, but in general, nebulizer tubing is pretty universal with only a couple of exceptions.


What PSI setting should I use for each drug?  


I've run by all settings with my CF pharmacist, and as I understand it, if the med is dose dependent (ie antibiotic), then the recommended PSI would be 25. The CFF website only lists TOBI at 25 psi as that is the most common inhaled antibiotic on the market. 


Does the setting matter?


Whether it really matters or not could be up for interpretation. Considering that the compressors we're used to have a much lower PSI, one has to wonder whether or not we've been getting really effective treatments this whole time. They obviously are doing something at a lower psi, but is it ideal? Who knows, but it makes you wonder. 


Will it affect the effectiveness of the drug if it is at a "wrong" setting?


I don't think you have to worry to much about setting a drug at the "wrong" setting. Just follow the loose guidelines stated above and I have a feeling that you'll be fine.


Will it really make my treatments go faster??


YES


How much time do your treatments take now?

Albuterol/Atrovent combo (double dose): 10-15 mins run at 30 psi

Hypersal: 15 mins run at 30 psi

Pulmozyme: 7-10 mins run at 30 psi

TOBI: 20 mins run at 25 psi

Is the compressor heavy?

Yes, heavier than any other compressor you're used to.

Is the compressor loud?

See answer above, just insert the word loud

Is this compressor expensive?

I've seen it sell anywhere from $250 to $400.

Would you recommend the Mobilaire to others?

Without a shadow of a doubt!

..........

Do you have any questions that I didn't cover here? Ask them below!

Reality Check!

Another week has come and gone. Somehow life post-Mckenna goes faster. It's like days are shorter now! Mckenna is now 12 weeks old...and I have NO clue where these 12 weeks went - one week and a day and she'll be 3 months old already. CRAZY!

This week was my first week back at work. Back to reality for this momma. Luckily I'm only back at work 20 hours a week. That helps big time. I'm able to get in 2 hours during her morning nap (what's funny is she only takes a long nap (longer than an hour or so) when napping in her swing next to daddy doing his treatments. Ronnie's morning treatments are LONG now because he just continually restarts his vest so we both can get in a long stretch of work. Treatments may be my new favorite things on earth.) Anyway, so I do a 2 hour stretch in the morning, and then another 2 hours or so while Ronnie plays Mr. Mom. All in all it was an easier transition than I thought. But I am glad I'm part-time and that I'm still at home because I think I would die going 8 hours without seeing Mckenna and I still get jealous when I hear them playing and I can tell she's being cute...so I run in to see what she's doing. Maybe one day she'll get boring and I'll be less obsessed?

And come to think of it, Reality is slowly creeping back in in other ways too...one real world first at a time. First, work. Now we're discussing hospital stays. Ronnie won't be going in anytime too too soon, but he's getting closer, as he's been out since September, and he's pretty consistent on how long he can stay out. So as we started talking about a possible tune-up in the next month or so, I started putting together what the reality of a tune-up would be. And it's not pretty. As you may remember, we live in Phoenix and he gets treated in Tucson (2 hours away). I have an office in Tucson that I enjoy working from. We have family in both places. These are all of factors that play into the "where do Mckenna and I stay during a tune-up?" debate. Right now I'm thinking we'll spend 4 days a week at home, and 3 days a week down there - sleeping at his mom's or grandma's. I obviously want to be with him as much as possible. But I also don't want to inconvenience his family (read: keep them up all night with a crying baby) and I don't want to get her all out of wack by sleeping in a different place, etc. We knew that hospital stays would be a bit tricky, but I don't think I really knew just how tricky they'd be until she got here. Needless to say I'm a bit nervous about this new reality, but we'll get it all sorted out once we fumble through our first one. I will say that the biggest blessing is that my office is walking distance from the hospital AND they are ok with me bringing Mckenna to the office with me. Man I love my work - they're awesome! So that will provide some flexibility.

And the last reality that has crept in in the last few weeks is the realization that this is forever. Some of you I'm sure just let out a laugh. I'm sure many of your blurted out a "DUHHH!!". And I know, this statement sounds really dumb. It's so obvious. Yes, a baby is forever. I, of course, knew that. However, I didn't quite know the REALITY of it. What I mean, for example, is I knew that I'd have less sleep with a baby...I didn't grasp that I'd never have the chance to catch up on sleep...because a kid creating sleepless nights is (what feels like) forever. It's not like a little blip where you don't get sleep for a week, and then you can catch up. Or I knew I'd be tethered to her day and night because I'm breastfeeding, but I didn't realize what that looked like in terms of my days. I didn't realize what it means to only have 2 hours away from the house on my own, max..."forever" (I get this isn't forever, but right now, it kinda feels like it! ha!). The permanent-ness (yes, I didn't just say permanent-ness) of having a baby is a no-brainer, but the reality of the permanent-ness didn't quite sink in until the last couple of weeks.

The theme of life the last couple of weeks has been "reality check" for me. It has been both fun and scary to come back to real life after 11 weeks of "baby bliss" on maternity leave. It's been fun and scary to realize what our new life looks like - certainly not bad, just different and a little scary trying to navigate through it all. But man, when I see her smile or feel her little hand on my skin, it makes me so thrilled to be in this reality!!

Have you ever had this happen to you though? Where you know something, but you don't quite grasp it until you're in the thick of things?

Mckenna's First Christmas Gift

...and she's starting to get it!!!

Thankful Thursday: Yoga Pants & "Magic Touch"

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 Mckenna's daddy...aka Ronnie. I say is that way though because Ronnie wears many hats around this house, and Mckenna's daddy is one of them. He is such a great daddy. He's fun. He's attentive. He's loving. He's knowledgeable. He's everything Mckenna could ever ask for in a daddy. I love watching him grow as a dad and watching Mckenna be totally smitten by him. If we want BIG smiles out of her, she needs her daddy. If we want her to be content and nothing is working, she needs her daddy. If mommy is frustrated with trying to figure her out, she needs her daddy. Bottom line, she needs her daddy and I'm so thankful that Ronnie is such a good one!

I'm thankful for yoga pants. Ok, so this one's a little silly. But I have to admit, I live in yoga pants. If I'm home, I'm in yoga pants. Shoot, many days, whether I'm home or not, I'm in my yoga pants. The are so stinkin' comfy I can't help but live in them. Plus, something about yoga pants makes them acceptable to wear in public in the middle of the day at 25. Somehow sweatpants in the middle of the day looks like you never got out of your PJs (which is ok too), but yoga pants can look deliberate and as if they're not your PJs but your choice of outfit for the day. And comfy pants mid-day in public is always something to be thankful for.

I'm thankful for zoo memberships. Ronnie and I got a year long zoo membership. It's AWESOME. For $80 a year, we both can go to the zoo as much as we want, we get 2 guest passes, and free or discounted admission to over 150 zoos across the country. Here's the best part: going one time is $18. So with the 2 guest passes (value $36) we only have to go once each to make it worth the money. My girlfriend and I are going to meet there weekly to walk and chat while our girls get to look at fun animals and learn new things. Win-win for everyone! 

Ronnie's List:

I'm thankful that Mckenna is still alive and well after two full days of me being Mr. Mom. Now, I certainly didn't think I was irresponsible enough to get her killed, but the fact that she hasn't been injured in any way is a miracle. I hope that trend continues.

I'm thankful for my new U of A cup. For Christmas, Josh and Chrissy got me a UofA 24 oz water cuppy thermosy thingy that has been awesome to drink my water out of. It keeps it colder than a regular cup would and of course, I get to see one of my favorite sights on earth every time I take a drink - the block "A"!!

I'm thankful for my "magic touch". I'm not convinced of it, but Mandi says I have the magic touch when it comes to burping Mckenna. I'm not thankful for my sake, but for Mckenna's. Air in her tummy must drive her crazy and I'm just glad that I can help her feel better. So, come to think of it, when she feels better, she's a happier baby and in turn, we are happier parents. So I AM thankful for my sake :)

So, what are you thankful for today?

First Day as Mr. Mom

The time has come.

Mandi has returned to work and now it's time for me to change into my "mommy pants". Thus far, Mandi has been doing the bulk of the entertaining while Peanut is awake so I could continue working during these past 10 weeks or so. Thankfully, everything slows down around the holidays, so I was still able to get in plenty of family time. But now the holidays are over and things are going to start moving again. This year will definitely be the year of balance and adjustment!

Mandi's employers have allowed her to come back at part-time for the beginning of the year which I'm sure is going to be a big help. It will give me an opportunity to see how the "flow" of the day is going to go before I'm on the boat all alone and Mandi is standing on the shore. No, it's not going to be that bad since she works from home, but I will be responsible for making sure she's actually able to get her work done. I'm actually looking forward to coming up with unique ways to entertain Mckenna throughout the day if anyone wants to throw something out there. And in case your wondering, not unique for her sake, but for mine :) If I have to watch her play on her little mat or read her books for 8 hours a day, then someone is going to get hurt - and since hurting myself, Mandi or Mckenna is not an option, it will probably be a random stranger and we all know that nothing good can turn out of that.

I am however really looking forward to this time I get to spend with Mckenna. Since we know that Mandi has to work and someone has to watch the baby, I don't feel so guilty when I'm away from my computer. It's still not easy, but it definitely makes it easier. A lot of this is going to come down to me shifting my schedule a bit and re-prioritizing what the most important things to get done every day will be. I may have to look into getting to the gym at a different time. Or maybe eliminating a show or two from my normal line-up. Or maybe, just maybe, I'll have to get up an hour earlier than I normally do (GASP).

The bottom line is: Things are a-changin'; it will be up to me how much they change.

The Year Ahead

I'm not a big New Year's resolution kind of a guy. I figure that if I need a certain day of the year to get me motivated, then making some a "must do" resolutions is the least of my worries. I do however like to look at the year ahead and figure out some things that I would like to accomplish or continue to do. They're not resolutions as much as they are plans for the future.

My number one focus this year is my family. Not only do I want to be the husband my wife has always dreamed about, but I want to be the kind of husband that blows away her expectations. I know that she would never say this, but she deserves that from me. The day I was blessed enough to make her my wife was the day that she made my life complete. I was finally given the woman that God created just for me and I could not have been happier. She "checks off all of my boxes" and my hope is that I can check off all of hers...and then maybe add some that she never thought about.

I also want to be the dad that my precious daughter deserves. There really isn't a whole lot that I can do right now besides meet her basic needs, but I can prepare myself for the future. Part of that is taking care of myself physically and also being there for Mandi so she can take care of herself. If we're there for each other and co-parent like we've always planned, that gives us both the much needed mental breaks once in a while as well. As we anticipate Mckenna growing from an infant to a toddler to little girl to a teen; I just hope that I can continue to sharpen my skills to be the father that God created me to be.

A big part of that is making sure that I'm capable to be the spiritual head of this household. I'm sold out on the fact that God has already laid out a plan for our family that is perfect, and a big part of that plan is for us to seek His Will. That of course is always a tough thing. How do I know His Will for my life? I don't have a blueprint for my life, or my family's(although that would be nice), but He did provide a blueprint for all of humanity to follow. This year I need to be sure to open up that blueprint, focus on what it says, talk with the Author and then wait for His response.

There are also some other things that I'd like to see done this year, but compared to what I've already talked about, it seems very arbitrary. I'd like to continue to pour into CysticLife.org and make sure it's the space that the CF community deserves. I'd like to I'd like to replant and spruce up my garden. I'd like to do a couple of house projects, not sure what they'll be, but something cool. I'd like to travel with my family of three. I'd like to continue to reach a couple of people with this blog.

So that's what's in store for me (if I have my way) - what about you???

Mckenna Monday: New Discoveries, New Year

Happy new year, everyone. I'm not sure what that means, but I keep hearing mommy and daddy saying that to everyone...and they yelled it the other night while I was in bed?

This last week has been a busy one for me. I feel like I've grown up a lot. This week's development? I FOUND MY HANDS. I mean, I knew I had hands. When I was in mom's belly I'd suck on them, they were my best friends. But then there was a time I could only find them by accident. Sometimes mom and dad would shove them in my mouth, but last week was the first time I could find them consistently, all by my own self. They are so fun to suck on. The only draw-back is that I've started drooling, so I leak like a running faucet, so I tend to get a bit wet, and drip all over whatever I'm laying on. Mom doesn't care though, she keeps saying, "it's ok, I'd rather the drool than the spit up!" As you can tell by her statement, I have a bit of spit up problem too. A burp rag is a permanent fixture on my mom and dad's shoulders. Sometimes they even drape it on or around my neck as my "spit up catcher" or "spit up collar" as they call it.

And now that I've found my hands, I LOVE touching things. I did keep my hands in fists, but now, much to mom's delight, I'll open my hands and touch things. Soft things are my favorite, but I'll give anything a feel once or twice. My new favorite game is playing with kitchen objects (don't worry, we keep the knives in the knife block...I just get to play with the safe ones). Mom and I pick out a bunch of fun kitchen gadgets and then we sit and talk about them, she rubs them on my cheeks and hands. We even sing songs about them (mom can't sing and I can tell she's making up the words as she goes along, but I don't let on...I just smile to humor her). So far a wisk is my favorite. I can really grab it with all the openings in the top...plus I like that mom tickles me with it by "stirring my belly" (as she says)...silly mom, you can't stir a belly!

My sleeping has been a bit crazy. I can't bare the thought of missing any action, so I only nap for 45 minutes to an hour most times (unless I'm held or really snuggly, then I can't bare the thought of missing out on snuggles, so I open my eyes for a second, but go right back to sleep). I was sleeping like a champ at night. But last week I would sleep a long 5-6 hour stretch and then wake up every hour, on the hour after that. On those nights I could swear mom wasn't as happy to see me each time I woke up. The last 3 nights I've gotten it together a little better. I sleep from 9 or 10 to 3-4:30ish and then I eat and go back to bed until morning. Mom seems to be happier with me on those nights. Although last night I couldn't fall back asleep after I ate, and mom finally just brought me to their bed to finish the night. I know she hates doing it, but I could tell she was just too tired. Sometimes they bring me to their bed, but normally it's in the morning just to snuggle me and smile at me after I wake up for the day. Hopefully, I can be more consistent, I know mom would really appreciate that.

Well that's all I've got for ya. This is going to be a big year for me; full of change. My new year's resolution is to learn to sit, roll over, crawl and MAYBE walk...if I decide to get crazy! What's yours?

2011 Year In Review

Here's the best that I can remember from 2011 with links to many of the highlights...Please be sure to read my blurb at the end. Thanks guys!!!

January-In January I had the opportunity to speak at the Stony Brook CF Center in Long Island, New York. I met some absolutely wonderful people and was able to touch some snow which is always a treat. We were also knee deep in getting Mandi's body ready for IVF. That in and of itself caused some very memorable moments.

February- I celebrated my 31st birthday and then quickly realized that I only had 6 years left to live. I'm of course being very tongue in cheek there, which I know would surprise most of you (NOT). The two things that were seared in my brain from this month was finding out that we were pregnant and the sperm extraction that led us to that moment.

March- We had our first annual Outrun CF Virtual Race in March and it was a smashing success. We received pictures from all over the world, and there is no doubt that CF awareness was spread and more people were active on that day. We also had our very first ultrasound and were able to lay eyes on our little Peanut.

April- We continued with weekly ultrasounds (a perk of IVF) and of course celebrated Easter with family. Another highlight was having a very successful clinic visit in which I blew a number I hadn't seen since 2003. I was about 6 or so weeks post hospital and really felt like I was getting in the exercise groove.

May- In May we celebrated one year of wedded bliss! to celebrate, we took an impromptu road trip out to Canyon Lake for a day of relaxation in the sun. We enjoyed a little bit of exploring as well as a feast of fruit while sitting in the back of the truck overlooking the lake! 

June- We found out that we would be having a girl this month!! We also took our annual trip to Rocky Point, Mexico to enjoy some family time, my cousin's wedding and playtime on the beach. It was also my first time snorkeling in a very long time and I thoroughly enjoyed it!!

July- Mandi and I headed out to South Carolina to enjoy the 4th of July weekend with some friends. They live on a lake, so we had many days full of swimming, fishing and boating. The fireworks show was beautiful and the only issues we had was packing for the trip and packing to come home :)

August- August was a big home improvement month around our house. Mandi went out of town for the weekend and I really wanted to surprise her with some changes when she got home. We were also knee deep in birthing classes but were able to break away for a trip to California for a good friend's wedding.

September- I spent a good part of September in the Hole which was a good chance for me to get tuned-up before the arrival of Peanut. Speaking of her arrival, she took Labor Day a little too seriously and gave us a little bit of a scare. The weekend after I got out of the Hole we were able to take some maternity shots which turned out to be amazing!!

October- This had to be the best month of the year! On the 16th we were able to celebrate Mandi's 25th birthday, and then about 44mins after Mandi's birthday ended, we were given the best birthday present of our lifetime. Mckenna Day Sharpe was born at 12:44 am and weighed in at 6lbs 2oz and was 17 inches long. She truly was a little Peanut!!

November- We got adjusted to life with a baby this month and did everything we could to spend every single second of every single day together. We also were pleasantly surprised to see how all of the maternity photos turned out, and if I may say so myself, I married a model. Mckenna seemed to grow-up a little bit each day and it was exciting to watch her grow into a little person. We were also able to host our first Thanksgiving meal at our own home with the help of my Dad and step-mom. It was so great to be able to spend time with them and watch them love up on Mckenna as well.

December- December was much like November in that most of the month was spent in amazement as we watched our little girl grow before our eyes. We also were able to make the perfect Christmas gift for family members with the arrival of Mckenna's first photos. We were also able to take a great family trip up to Williams, Arizona to ride on the "magical" Polar Express. We're hoping to make it a family tradition of sorts and I will admit it was a pretty  good time. As a bonus, I got to touch some snow for the holidays!!

And finally, I want to give my sincere gratitude to all who have followed our journey over this past year and shared in all of the joy, chaos and life-changing events. We are truly humbled by all of your kind words and support. We appreciate each and every comment as you guys give us the energy and strength to write in this blog almost every single day. If there are any particular subjects you would like me to write about in 2012, please let me know. This blog is just as much about you guys as it is about us.

Again, thank you, thank you thank you from the bottom of my heart. Have a safe and happy New Year and I'll see you guys in 2012.

Love from my family to yours,

Ronnie

Teenagers and Cystic Fibrosis

Question: My 15 yr old granddaughter. She has rebelled at times on treatments.Drs say it is age she will get better as she gets older. Were you always as good about it? Any feed back on this will help.

The doctors are correct in saying that it will get better with age. Teenagers in general are rebellious with or without CF. CF only exacerbates the problem as there is nothing more important in a teen's life than status and friends. Having CF and doing treatments can unfortunately at times interfere with these two things. I'm guessing that she has said more than once "I just want to be like my friends," or "I hate CF". Both of these are very common and very valid responses to having CF as a teenager. What she's going through is tough and is not at all fun.

What we must realize however that, "being like our friends", includes having the ability to do what they do. Whether we like it or not, this is made possible by our health. Not being at a good place with our health inhibits our ability to just be "one of the guys" (or in this case girls), but it's hard to see that as a teen.

We often think about treatments as a means to an end when we're sick. I encourage people to think about treatments as a means to an end when we're healthy. What I mean is this - we must be willing to do everything necessary when we're healthy to put ourselves in the best position not to be sick. Treatments need not be a response to sickness, but used in conjunction with wellness.

I use the analogy of a scale. On one side we have someone "sick" with CF and on one side we have someone "healthy" with CF. Now, if you had a rock that represented doing treatments, which side of the scale would you put the rock? Who do we as a community instinctively think about as "doing more treatments" than the other person? I would put forth that most of us would put the rock on the side of the scale with the sick CFer. This certainly isn't true for everyone, but from my experience, that would be my hunch. Now, each one of us must answer why we put the rock where we did and that will generally tell us about our view of CF, control and treatments.

As for me, I put the rock on the side of the healthy CFer. When I was a teen? Not so much. I thought only "sick people" did a bunch of treatments. Granted, I was doing two a day, but it was rarely willingly and not something that I looked forward to. In many ways, I fell into the trap of being "too healthy" with CF. See, in high school; my FEV1% was around 110. I felt and acted just like everyone else. The only time I thought about CF was during said treatment times and when I required a hospital stay due to an exacerbation (about twice a year). Apart from those times, CF never entered my mind. I felt some relief from my treatments, but I didn't feel THAT much.

What really made my lungs feel like a hundred bucks was football practice, or any other physical activity like basketball, baseball, running etc. That's another thing to point out - until I started playing sports year round, my FEV1% was nowhere near that 110% that I mentioned earlier. So in essence, I was doing a ton of treatments, 2-3 hours per day to be exact, just not the traditional treatments (nebs, vest) that we think about. I was doing additional treatments in the form of sports and exercise. To this day, nothing makes me cough more or produce more mucus than running, be it on the treadmill, street or football field.

My family supported me in many ways regarding treatments and CF care. I think a lot of the credit has to go to my mom for being quite possibly the biggest reason that I took such good care of myself growing up. She had quite a “unique” strategy – My house, my rules (I’m of course kidding when I say that it was unique). One thing I’ll say however is she delivered this strategy with complete love. I never doubted for a second that I, and in turn my health, was the single most important thing to my mom when I was growing up. I was an only child for quite some time, so my mom was able to focus all of her energy and time on making sure she did everything necessary to put me in the best position to succeed. This included running me around to practice, supporting me when I wanted to try a new sport and most of all, holding her line when it came to treatments. 

Here’s the deal though, she balanced that with great freedom. I had a very normal childhood. I could do just about anything I wanted to do in terms of sleepovers, extra curricular activities, etc AS LONG AS my treatments were done. And when I stepped out of line, she didn’t waffle or give me another chance; I faced consequences for not following the rules. She only had to keep me out of football practice one time to show me she was serious after I chose to rebel against treatments that particular morning.

All teens have something important to them. All parents find their children, including teens believe it or not, important. In my opinion, effective parents mesh what’s important to them with what’s important to their teen. There is one key thing to remember though – one is the parent and one is the teen. In a perfect scenario the parent and the teen can come to a mutual agreement about treatments and expectations. But, and this is a big but, perfect scenarios aren’t the majority. At some point, the parent must decide what’s more important to them, a perfect scenario or their teen doing his or her treatments.

There is hardly a fool-proof strategy when it comes to convincing teens that treatments are important or implementing a system that results in few missed treatments, there is however a great reward for parents, and teens, that manage to do so.

Thankful Thursday: Shorts & Thoughtfulness

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 Christmas. There is nothing like celebrating the birth of Jesus Christ! I'm so thankful God sent His only son, so that I may be forgiven of my sins. I'm also thankful that there is a holiday to celebrate Jesus' birthday that is always so joyous and exciting.

I'm thankful for the first Christmas with my baby girl. She obviously doesn't get it yet, as her day was just filled with more eating, pooping, sleeping and playing, but she was the best gift this year. I can't wait for future Christmases with her. Next year she'll be able to open her own gifts, which will be exciting. That being said, I don't want her to ever grow up - I'm cherishing the baby phase!!

I'm thankful for a husband who listens. I hate buying workout shorts because I think they're over-priced, and he knows that. But I have been talking about needing new shorts for some time now. Being the great listener he is, he bought me several pairs of workout shorts AND some shirts. YIPPEE!! What a good listener and thoughtful hubby!

Ronnie's List:

I'm thankful that I was able to have my first family Christmas morning. Now when I say family, I'm talking about just me, Mandi and Mckenna. I was looking forward to doing our own thing Christmas morning and starting our own little traditions as a family. We also were able to have the best of all worlds as we hung out with my side of the family Christmas Eve and Mandi's side on Christmas Day after starting at our house. It was really a special time had by all at all stops during this year's Christmas Tour :)

I'm thankful for thoughtful family members. I myself have never claimed to be a great, or should I say, thoughtful, gift giver. I tend to be very practical with my gifts and often times just listen for a family member to actually say that they need something or that an item often used is about to break. Not only do most of my family members give very practical gifts, but they're also very thoughtful since a majority of the things that I got are not something that I already own, but something that will make my life easier. If you're reading this and you gave me a Christmas gift, THANK YOU. If you didn't get me a gift, WHY NOT?? Kidding.

I'm thankful for fresh squeezed Orange Juice. I'm only thinking about it right now because I'm sipping on some as I write this. We have a couple of orange trees in our yard and December is a great month to harvest the delicious little orange balls. I generally drink nothing but water, but I'll make an exception for anything that comes from one of our fruit trees!!

So, what are you thankful for today?

Rondi's Recipes: Apple Nachos

Looking for a tasty treat this Holiday Season? Want to spice up your New Year's party with something unique and messy? Look no further!! I present, Apple Nachos :)

Slice apples to your desired size:

Melt marshmallows in microwave or use marshmallow paste:

Other ingredients include Caramel sauce and chocolate chips (we did both semi-sweet and white chocolate): 

Spread on melted marshmallows:

Drizzle on some caramel sauce:

We also added some of these mini-marshmallows:

Enjoy!!

Let me know what you guys think if you decide to try it out! I'd also love to hear some of your unique dessert ideas :)

Mckenna Loves Her New "Playmat"...Thanks Momma!!

Christmas Eve & Day in Photos

Christmas Eve

Christmas Day

To My Democrat Friends:

Please accept with no obligation, expressed, implied or implicit, my best wishes for an environmentally conscious, socially responsible, low-stress, non-addictive, gender-neutral celebration of the winter solstice holiday, practiced within the most enjoyable traditions of the religious persuasion of your choice, or secular practices of your choice, with respect for the religious/secular persuasion and/or traditions of others, or their choice not to practice religious or secular traditions at all. I also wish you a fiscally successful, personally fulfilling and medically uncomplicated recognition of the onset of the generally accepted calendar year 2012, but not without due respect for the calendars of choice of other cultures whose contributions to society have helped make America great. Not to imply that America is necessarily greater than any other country nor the only America in the Western Hemisphere . Also, this wish is made without regard to the race, creed, color, age, physical ability, religious faith or sexual preference of the wishee.

To My Republican Friends:

Merry Christmas and a Happy New Year


But seriously, I hope that everyone has a great time with their family over the next few days and enjoys this Christmas season. God bless.

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

....nothing will :)

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 www.mogankoforcf.org 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!

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?