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.