Some Feathers May Get Ruffled

Ever so often, I'll write a blog on here that will ruffle the feathers of some in the CF community. It's rarely, if ever, intentional, and my intent is never to upset my readers or make them feel bad. It's something that goes along with the territory I guess. I think an ex-preseident of ours said it best: 

“You can please some of the people some of the time, all of the people some of the time, some of the people all of the time, but you can never please all of the people all of the time.” - Abraham Lincoln

Another thing that goes along with the territory is negative responses from some of my readers. These include, but are not limited to - personal attacks, attacks on my family, unfounded accusations and attacks on my faith. 

Fortunately, the positive reactions outnumber the negatives ones about 100 to 1. I always keep that in mind when someone decides to take it upon themselves to try and "hurt me" because I "hurt them". 

I'll tell you what the best medicine is though, it's getting responses like the one below to my blog yesterday:

Mama: Hi Ronnie, I just want you to know we are so grateful for you and how encouraging you are! [Son's name] is doing his treatment that he does not want to be doing and read your post about how you did not do your treatment like you should of and he said, "Man, mom, Ronnie is so encouraging!!!". Thank you sooooooo much ! 

Me: I'm so glad that he can find encouragement from some of my posts. My hearts desire is that others, the next generation, learn from my mistakes and don't make the same choices that I did. If I can change someone's life as a result of my stupidity, I'm glad to do it. Thank you for sharing that with me. Made my day!!! 

Mama: Are you kidding, you just helped me stop nagging, I get tired of hearing myself, too.

That's EXACTLY why I do what I do. I've been very upfront about all of the bad choices I've made. I talked about the different tricks that CF can play that I fell for hook-line-and-sinker. I write because I hope that people like the Mama above and her son are reading. I hope that something I say can help them make better decisions than I did growing up. Simply, I hope that the next generation treats themselves much better than I did.

I'm often reminded by this quote of a fellow cyster in the community that I think put it best:

"I wanna help as many CF'ers as possible. It's therapeutic to think my failure could be someones success." - Michelle Matta

I love it. After hearing that, I just knew that she had to write a guest post on RSBR, which she did, here. I reminded her however that failure only happens when we give up and it's an outcome of deciding not to try. Both failure and success comes in many forms and is different for each person involved. Fortunately, I've rarely seen anyone in the CF community flat out fail!

Lastly, I'd just like to thank all of you who send kind notes, emails and encouraging comments. You keep me going. I'll continue to write as along as there are people out there who will read, and hopefully, leave this blog feeling encouraged, motivated and/or inspired. 

I've come to realize this -  The feathers of my generation may get ruffled while I encourage the next generation to fly higher and straighter at any cost.

Are you full of ideas?

For the past few months I've been collaborating on some design ideas with a gentleman from the UK, Matt (more info below about him). We started out just throwing different ideas back on forth on what type of products could make the life of someone with Cystic Fibrosis easier. It's been fun coming up with different things, and the cool part is, nothing is too crazy!! Matt is willing to give everything a look. 

I asked him to write up a summary on what AIR is, who he is and what type of people he's looking for. He's opening up the community to include all of you who are interested. Read Matt's write-up below. If you decide to join, drop me a note and I'll look for you :)

..................

What is it?

AIR is a research project looking at how people can be better included in the design and development of medical products. It seems like common sense that people who have to use a medical product would be included, but it's not always the case.

Sometimes, people are included, but only to have opinions on things that have already been designed- other times, people are included but not allowed to have a fundamental say on what a product does; or even whether it fixes the problem that they want to have fixed in the first place!

In other industries, people are included as collaborators- they have the power to change the direction of a project, as they are included from the very beginning. Also, because they are equal partners in the design of the product, the end result is a better fit... it makes sense for the producer who wants to sell the product, and the person who has to use it. This is called Co Design.

However, in order to collaborate- people need to meet up. This can be a problem; what happens if you want to collaboratively design a product with people who aren't allowed to meet up?

AIR is a research project that is tackling this question, by allowing people to participate over the internet. It's a social network, all about developing concepts for medical devices for people who live with Cystic Fibrosis.

I'd like to invite you to take part.

It's open for anyone to join, as long as you're over 18. It's an opportunity for anyone to participate, whether you live with Cystic Fibrosis, or have intimate knowledge of living with someone who has Cystic Fibrosis. If you're someone who is interested in making things, and designing, but does not live with Cystic Fibrosis, then you're welcome too; it takes many people with many skills to help create a great product concept.

You can join and comment on other people's ideas, post your own, or share experiences that you feel strongly about without having an idea for a product... maybe someone else will see your story and be inspired.

Who am I?

My name is Matt (http://www.shu.ac.uk/research/c3ri/people/matthew-dexter), and I'm a design researcher from the UK, at Sheffield Hallam University (http://www.shu.ac.uk/research/c3ri/research-centres/art-and-design-research-centre). I am interested in how people can be included in medical product design. I don't have Cystic Fibrosis, and although I can't ever truly understand what it's like to live with CF, I can see that it's difficult to currently collaborate on making products.

This project isn't linked to industry, and is not for profit. The findings will be published in academic journals and conferences, and used as evidence to demonstrate how valid this method is; with the hope of influencing how medical products are designed more broadly. Although, there could be circumstances where the project receives attention from the press- this is not planned.

Because this social network is available publicly, you can choose to participate anonymously by signing up with a pseudonym, or by signing in with Facebook (or Twitter) and sharing your name. You can participate as much as you like, and at any time of the day. You're not signing up for anything financial (I don't need your credit card details!), and you can choose to stop any time you like without having an impact on any medical care that you currently receive.

I'd love to welcome you to AIR, and I hope this finds you well.


Click here to check us out:  http://airdesignspace.ning.com/

Two Sides of the Coin: Great Conversation with Fellow Fibro

Many of you, if not all of you know Josh Mogren. If you don't, you should. He's done amazing things for this community and continues to be a great example for all. He's done an especially amazing job teaching the younger cysters and fibros how important it is that they take care of themselves and presents that message through his buddy Moganko. Josh also has a blog called "Welcome to Joshland".

With that said, he wrote a blog yesterday, which was wonderfully written by the way, about his thoughts on sharing PFT numbers. While I agree with everything he wrote, I stand on the other side of the issue. Nevertheless, we had a great conversation in his comment section that I wanted to share (there may be more posted, but at the time this blog was published, that is all that is there). You get both sides of the coin, and you can see two fibros, who don't agree on the means, agree on the ends, in a very loving and respectful way :) 

He's a very valued member of this community and I'm thankful there are guys out there who I can be a Robin to their Batman. They didn't always agree right?

*****
Read his blog HERE and my first comment starts below with his responses in grey.

I agree with almost everything you said, J-Mizzle. With that said, I still don't think sharing numbers or asking someone their FEV1 should be a no-no. There is a lot of truth in being able to do things at 75% that you can't do at say, 35%. There's also truth in that it's harder to go from say 40% to 50% than it is 80% to 90%. If someone comes to me with an exercise question, knowing their lung function is pretty important.

Here's why I'm specific and say my numbers. I'll use myself as an example, if I said my PFTs went up since I recommitted my life to exercise and treatments, but didn't give my number, I feel that it doesn't make as much of an impact. "Many people couple think, great, they went from 85% to 90%. Doesn't sound worth it." or "You were much healthier than me I'm sure". For me, that doesn't tell my story.

My story is - Well, I started at 50% and achieved that number after 52 days in the hospital and coming in with an FEV1 in the 20's. Then, after two years of working my butt off, never missing a workout session and doing 3 to 4 treatment sets a day, every day, I got to a 75%, a number that I hadn't seen since 2003. (Yay, run-on sentence!) 

Point is, sometimes numbers provide context. And sometimes, context is important.

I'll end at this - I'm also a little sensitive to this topic, as it relates to publicly sharing personal stuff, when a fellow community member asked me to stop posting pictures of my family and house because not everyone in the CF community can be happy and have a family. I thought then, where does that end? Should people not post pictures of green eyes because someone in the community may want them but can't have them? 

All that to say...I appreciate and respect where you are coming from and your perspective has certainly been formed through a very valid and real situation. I think it's great that you don't share your numbers and I don't think you should at all feel compelled to. Thank you for writing this.

And yes, it is only a number!

Ahhh Mr. Sharpe....I figured you'd chime in on this one. :-)
As I said at the very beginning of the post, if people want to share their numbers, then that's fine. I know that it helps some people and motivates them to a healthier lifestyle. 

Personally, I'd rather hear someone say "I was able to increase my PFTs by 20% by doing X,Y and Z." because I'd want to know how they did it. This is especially important to me since there are so many different environmental, physical and genetic factors that contribute to how CF manifests in our bodies. Bottom line is, one person's FVC and FEV1 is irrelevant to another. 

More importantly, my sister represents a lot of people in the CF population who work really hard to take care of themselves and still struggle to breathe. They spend more time in the hospital despite busting their butts. Your numbers would mean nothing in the context of Angie's situation because CF is different for everyone. 

Much respect to you, Ronnie.

Totally agree with you. One person's lung function is totally irrelevant to another just as one person's CF is as well. It's funny, I agree with you on everything, we just have different opinions. It's weird how that works :)

And I understand that my numbers would mean nothing in context of Angie's situation, but they could mean something to 1000 other people.

Here's what I've learned - No matter what I say or how I say it, people are going to agree/disagree and love/hate me. The only I promise to anyone who listens to a word I have to say is honesty, and to stay true to who I am.

It's also important to point out that the knife cuts both ways. Their are those in our community who don't share their improved or high numbers, or hardly anything else for that matter, for fear of being judged or slighted by those who view themselves as "less fortunate".

To me, that's just as big of a travesty. No one should ever feel guilty about good health.

Love this conversation.

I agree with you, the knife does cut both ways. Which is why I wrote this in the blog post and why I written similar thing in other blog posts: 

"No one should have to feel the guilt of where their numbers are at. I don't care if your numbers are off-the-charts fantastic or they're at transplant level, they shouldn't cause sadness. Especially if you're working your butt off to stay healthy." 

No one should feel guilty for being healthy, but I believe it's important to acknowledge and show empathy to those who might not be. It's a sign that we're lucky to be in the positions we're in. Also...I don't think those people view themselves as "less fortunate". I think most have had a very rough run and are doing the best they can to manage it. 

If what we say helps people, then that's a good thing. We're both all about reaching people and helping them do the best they can with what they've got. We've just got different ways of doing it.

People often use that word "lucky" and it's something that drives me bonkers as well. Are some people who are "the healthiest among us" lucky, or are they working their butt off? Well, as you know of course, both. But their are far more who are working their butt off and doing what they have to do each and every day to stay healthy, then are doing nothing and staying that way. And yes, I think there are plenty who have had a rough run of it and doing the best they can to manage. There are those who can do everything right and still be sick. However, you ask any CF doctor, or refer to any study that tracks adherence rates, the picture is clear - the majority of CF patients fall into the meaty part of the bell curve in which what we do (or don't do) will positively or negatively impact our health. 

My passion comes from getting to people before they bail on treatments or make stupid life decisions. The fact of the matter is, many people "get it" when it's too late. I yearn for people to "get it" before they're staring at a low lung function or a recurring infection with no end in sight. You can in fact work your butt off when it's too late and not have any positive results. They're not impossible, but certainly much harder to achieve. 

I simply want the younger generation to make better choices than I did. Just like you :)

I'm thankful that you're such a visible part of this community and I appreciate everything you write.

And that's where you and I are different (which is okay). 

Studies are awesome and I'm all about the research and science aspect of CF. If it wasn't for those things, we'd be dead.That being said... 

For every doctor's opinion or study you give me, I can counter it with stories of real life experiences and situations as to why people with CF are non-compliant and why they struggle. These are factors that no doctor could ever reproduce in a study or write about in a paper. Many times the meaty part of the bell curve holds so much more than just the black and white cases of being lazy and not doing treatments. It's more than just statistics and numbers. 

When I have empathy for someone, that doesn't mean I cut them slack for not doing there treatments. I bust on people all the time about taking care of themselves and I have no sympathy for that. You have to love yourself and believe in yourself before anyone else will believe in you. The bottom line is we can say whatever we want to people in the CF Community, but they're the ones who can do the work to help themselves. We can't do it for them...we can only show them a path. 

My empathy comes from the things that have happened to me. The losses, the struggles, the pain have made me understand that this disease is not as black and white as people make it out to be. I can't ever be in someone else's shoes with CF, but they want my help and they need to let that our I'm here to listen. I'm here to support and do whatever I can to ease their struggles. 

I call myself lucky because I am. Lucky to have the genetic mutation that I do. Things could've been much harder on me. Angie wasn't so lucky when it came to her health and her genetic mutation. I'm lucky to have the support system that I do. Many people in our situation don't have anyone to turn to. I'm lucky to have life I do. I love my wife and my family. People think we're entitled to things like that, but that's not the case. Yes, I've worked hard to get what I want in this world and I'm damn proud of that, but a lot of it wouldn't have happened without a lot of luck and a lot of love. Life is a crapshoot and we make the best with what we're given. That's what I've done. That's what luck means to me.  

And guess what? It could all be gone tomorrow. So I do my best to be humble and know that fate, God or luck (maybe a little bit of all of them) has given me experiences and a gift to connect to people and I don't want to take that for granted. I want to show them compassion, love and understanding in the midst of a terrible illness. I want to help them believe in themselves even through the hardest of times. 

I share my story and Angie's story so that people will see what a gift life is and how truly lucky we are to be on this earth and live whatever life we're meant to live no matter what stands in our way. Hard work and luck go together in my life.
I'm very appreciative of what you do for people, Ronnie. Please don't think anything different. I respect you and your family. We just have a different path to a similar kind of success. 

I'm glad we're having this discussion.
Peaceful Things, Ronnie.

I think we could go back and forth all day on this, so I'll just end it here.

I just can't help but think about the phrase "same kind of different as me" when I think of us. Two lives, two paths, two messages, one goal. Love it.

Thanks again for all of your hard work and dedication not to only the community, but to yourself.

Likewise, dude. Likewise.

*****

The final thing I would like to point out is that all we have come to know is either learned or it's come by experience. Experience shapes our truth. Two people can have opposing views, opposing "truths" and hold opposite opinions, and both be right. We only know what we believe. What I loved about this conversation is the diversity in opinions held, yet the unification of wanting what's best for the community.

I Write About My Health Because.....

Oh, that's easy, because I don't want others out there to be an idiot like me.

For those of you who have been following this blog since the beginning know the full story about how this blog came to be, but for those of you who have recently come on board, let me give you recap:

I was a "sick" kid.
I became healthier through living a very normal life which included a lot of sports.
I always did 2 treatments a day, rain or shine, everyday of my life from ages 0 - 20.
I had over 100% lung function in high school largely due to my commitment to treatments and sports.
I moved out of the home when I was 20.
I no longer did two treatments a day everyday rain or shine.
I would do one treatment a day everyday rain or shine and two if "I had time".
I no longer was active everyday in sports or the gym.
My hospital stays increased.
My lung function declined.
I blamed it on CF.
I wasn't willing to adjust "me" because I wanted to "live life".
I continued making stupid choices.
I continued putting other things such as a social life, work, friends, vacations above my health.
My lung function continued to decline.
My hospital stays continued to increase.
I continued to "not let CF control me".
I almost died.
I "woke up".
I looked in the mirror.
I realized that in fact I was contributing to my decline in health.
I reflected on the days that I had higher lung function.
I found a common thread.
I always did treatments and I was active.
I started a blog to hold myself accountable.
I adjusted.
I started to do 4 treatments a day.
I started to run.
I started to go to the gym.
I put my health as my number one priority.
My lung function increased.
My hospital stays decreased.
I got married.
I had a baby.
I continue to do my treatments.
I'm still active.
Not only has my lung function increased, but my "life function" has as well.
I'm still adjusting.
I still blog about it.

Get it? Got it? Good! So why do I write about my health? Because I'd like to see other avoid the middle part of my life. I'd like others to learn some life lessons from my story instead of having to learn through the pain and trashed lungs that I had to learn through. I'd like to give others the sense of power and control that I feel over this disease.

I started this blog thinking that no one would be interested in my story. That no one would really care what I was doing everyday to get back to the "old me". I started this blog because I knew I needed to change. I knew I needed to do my treatments each day, everyday for the rest of my life. I knew I needed to challenge myself physically like never before. I started this blog because I needed an accountability partner. I started this blog for you. I started this blog for me.

I started this blog hoping to impact just one life in a positive way.

I've done that, my own.

Now, I'm hoping to impact two.

Some People Just Go Above and Beyond

We're always caught so off-guard when we get kind notes, or in this case thoughtful gifts, from those in the CF community. We don't feel at all deserving of them, and as people who are uncomfortable accepting gifts from family, accepting kind words and gifts from "strangers" is a whole different ballgame. Nevertheless, when someone goes above and beyond for us, we feel the need to give them some love.

A super special momma to a studly young fibro totally made our day this week. Not only did Julie send us something for Peanut, but she actually took the time to make it with her own hands. I have to give her some love for that, but I also feel the need to give her some love for the email that she sent in order to get our address to send the package. It is by far one of the most entertaining notes I received and I loved every minute of it:

Ok, first off, let me preface by saying I'm not a stalker. Seriously. If I were, it wouldn't be for anyone in a state as stupidly hot as Arizona, because the weather there is simply not conducive for stalking. Beyond that, I'm entirely too lazy to stalk, though I do keep up with your blog because that only takes a click of my mouse, which, while that takes a bit of an effort, is doable for even lazy people.

Now how am I not supposed to give up our address? Seriously, how cute was that? I was smiling ear-to-ear the day that I got it as I'm smiling ear-to-ear today re-reading it. After that splendid intro she hit me with the deets:

I made your baby girl a lightweight sweater for this fall and winter. I don't know how cold it gets there, but this should be fine for Arizona. Not too warm, but warm enough. It fits up to three months old and is made from lightweight, machine washable (on delicate cycle) wool. I'd lay it flat to dry. The buttons are little roses (of course) inside of hearts, replicas from the 1930s. I'm quite proud of it and I want you to have it. So give me an addy. I figure you probably have a PO for Cysticlife, which is cool, but if not, I promise I'm safe to send a personal address to without you having to sleep at night with one eye open.

Classic Julie, simply classic.

I of course wrote an email to her singing my praises, but sometimes that's just not enough for me. I wanted to make sure others could share in my joy. So here it is, a simple public thank you on my personal blog to a woman that I feel needs to be recognized. THANK YOU SO MUCH JULIE!! Your efforts have not gone unnoticed and I hope that everyone reading can see how much hard work you put into this. Truly amazing.

Without further adieu, please check out the cutest hand knit sweater in the world (and yes, those are heart buttons with little roses on them) :)

Thankful Thursday - Itches & Girl Power

Know what time it is? 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. as I mentioned, I no longer have the "linkytools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for fellowship. I'll be honest, I used to be the biggest social butterfly you've ever met. But as I've aged, I've turned the other way and actually avoid random chit chat as much as possible. However, whenever I'm actually at a social gathering, I really enjoy myself. This has been exactly the case with our small group. We meet every other Wednesday, and I always really enjoy our time with the couples in our small group. The conversation is always thought-provoking and I truly enjoy all the other couples in the group. I am so thankful to have a great group of people at our church to be in fellowship with. Also, Tuesday night for the first time a group of woman from my church got together to just hang out, and I am so thankful for the time we spent together, and incredibly thankful that we're going to continue getting together every other Tuesday.

I'm thankful that I've stopped being hungry ALL the time. The first trimester of my pregnancy I felt like I could eat a 6 course meal ALL day, every day. And as I gained a little more weight than I was "supposed to" I was a little worried. However, I have stopped feeling like I needed to stuff my face all day, so I think I'm eating quantities of food that are far healthier for me and for peanut.

I'm thankful for popcorn. I've always loved popcorn, and it always hits the spot. But I often don't think of it when I'm looking for a snack. However, I rediscovered my love of popcorn last night, and MAN am I thankful for that salty, buttery treat!!!

Ronnie's List:

I'm thankful for new connections made this week. It's seems like every week I am fortunate enough to talk to a couple new people from the CF community who I have previous not been able to speak at length before. I love getting the opportunity to connect on a deeper level and have the ability to share stories with each other. Every week is pretty awesome, but some connections that I've made this week are super awesome.

I'm thankful for my spur of the moment "itches to do something". I'm the type of person that if I get the urge to so something, I do it. Now, sometimes this is terrible and sometimes this is good. This week it was good. I had the sudden urge to clean our "catch-all closet". I'm sure that most of you know what I'm talking about. You know, that closet (or room) that collects everything that you don't have a place for. Well this week, I got the urge. As of right now it's not completely clean, but I'll tell you what, it look 1000 times better than it did on Monday!

I'm thankful for doctors that listen. During my last clinic visit I presented my doc with an new (but old) medication that I wanted to try out after hearing some good things about it on CysticLife.org. Without hesitation the doctor agreed to look it up and figure out the best way for me to get it. Within a week I was on my way to pick it up from the pharmacy. Thank you Dr. Daines!!

I'm thankful for the members of CysticLife. We were made aware today by the company that handles our server that CysticLife.org was coming close to using up all of it's allotted memory. What a great problem to have! Basically, being too active on the site is both bad and good...well bad until we can upgrade our server :) For the time being the site will have slower response time (we were able to make a few adjustments to improve response time today), but we're well on our way to making the necessary upgrades. What an awesome problem to have huh?!?!?

So, what are you thankful for today?

Thankful Thursday - Pita Bread & Jelly Bird Eggs?

Know what time it is? It's thankful Thursday time! I've been out of the Hole for over a week now and am living the dream! 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. as I mentioned, I no longer have the "linky tools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful that peanut is growing just on time and that I'm still having a very smooth and easy pregnancy thus far. I'm thankful that with the exception of being a bit sleepy, I feel great with no morning sickness. I'm just so thankful to be pregnant with a healthy, growing baby!

I'm thankful that the weather is so gorgeous in Arizona. Yesterday I was able to enjoy a 4 mile walk outside in 75 degree weather. It doesn't get much better than that!! I feel so blessed to live in a city where the sun is shining most days and you can be outside all year long.

I'm thankful for pita bread. We bought some pita bread for a recipe the other day, and I have now found a bunch of uses for pita bread. Pita with hummus and veggie sandwiches, pita with scrambled egg whites and salsa, pita with grilled chicken....the possibilities are endless. I always love new additions to my pantry.

I'm thankful for my hubby. Yesterday Ronnie joked that I literally couldn't have a better husband for me (who knows what the context was). I laughed, but I then was legitimately thinking about his "claim" and I actually, really agree with this joke. I couldn't have a better husband for me. Could there be other fantastic husbands out there? Sure. But Ronnie is truly the BEST one out there for me. I feel very blessed to have a hubby that is with me through it all, and loves me, for the crazy, emotional, hormonal, passionate girl I am. I am blessed.

Ronnie's List:

I'm thankful that my workouts have been going so well. I certainly haven't felt like running everyday since I got out of the Hole, but that's just what I've done. I've had very minor leg pain and my lungs haven't really held me back one bit. I look forward to pushing it even further and continuing to increase my mileage week upon week.

I'm thankful that my wife gives me just the right amount of push and pull. What's great about Mandi is that she doesn't breathe down my neck about taking care of myself and running/getting to the gym, yet she encourages me in just the right way to the point that I want to push myself further than I did the day before. I don't know that there is a science behind her method of madness, but if there were, I'd bottle it up and sell it.

I'm thankful for the opportunities I get to talk to parents with children with CF. I have a big heart for the CF community, but I have an even bigger heart for the parents in the CF community. I truly believe that behind every empowered CFer out there stands proud parents who empowered him or her. I love getting the chance to talk to the next generation of "empowerment givers" :)

I'm thankful for jelly beans and not any jelly beans, but specifically Brach's Classic Jelly Bird Eggs. They are seriously the best ever and I eat way too many "just one handful"s throughout the day. In fact, I have 5 sitting next to me right now with one in my mouth. My favorite flavor is the pink one. You?

So, what are you thankful for today?

2nd Ultrasound Update!

Yesterday, Mandi and I woke up nice and early in anticipation of our second ultrasound. If you guys remember from a couple of weeks ago, actually last week, we had our first ultrasound at about seven weeks pregnant. At that time our little peanut was about the size of a blueberry, which come to find out was about 9 mm, and we're proud to report that he/she is now about 15 mm! We went in with some of the same emotions that we did last week not exactly knowing what to expect and hoping for the best. It's always an interesting feeling when they first start the ultrasound because, at least in our experience, the first thing we see is what looks to be an empty black sack. It must be the way that the ultrasound instrument is pointed at first because now we're two for two in that empty black sack containing our little baby.

We were able to see the heart beating fast again, this time 167 bpm and our doctor informed us that right now our baby is mostly made up of his or her heart. Everything else is very normal and he is very pleased with the progress. Mandi definitely has less bloating in her stomach and is visibly more comfortable when walking, sitting or standing. The decrease in the bloating of the belly is most likely due to some of the fluid in her ovaries and cysts, following the egg retrieval, are now starting to lose fluid. We are now expecting any bloating from this point going forward to be a result of the baby which is bloating we will take any day of the week. So all in all, it was a very good second ultrasound and we couldn't be anymore pleased with the results. Check out our little seahorse below!

We are also able to meet up with some friends of ours in the CF community that we have had the opportunity to hang out with before near their home turf. We met up with the Koblers (Brian and Jen) for the first time in San Francisco at a CF concert series event last November or so. This time they alerted us that they would be in Scottsdale taking in a spring training game between the Giants and Rockies. They were nice enough to invite us along and of course we jumped at the opportunity to hang out with them and take in a ballgame. Neither Mandi or I have ever been to the ballpark in downtown Scottsdale and I must say it was quite a treat to be in such a nice facility. Unfortunately, the weather didn't cooperate with us yesterday as it was overcast the entire day and it was raining before even the first pitch got off. The rain continued to pick up throughout the game and eventually the game was stopped in about the fourth inning with the Rockies handing it to the Giants. Luckily, the ballgame wasn't really the reason we were there.

We were there to hang out and talk with some friends of ours and had baseball as icing on the cake. Since the game got out early, we all headed to lunch to hang out and chat some more. Mandi and I love being able to get to know others in the CF community that we often exchange e-mails, Facebook messages and chats on CysticLife with but rarely get to meet in person. It's so nice to be able to "put a person" to just the face or the name that comes across our computer screens many times in our daily lives. The Koblers are no exception as they are very warm and friendly people who are fun to hang out with. As a bonus, we also got to hang with Grandpa Kobler and Brian and Jen's daughter, a young little cyster named Riley. She is as cute as a button and was definitely entertaining while we are all inhaling our pizza. We absolutely cherish opportunities like this and were very blessed to be able to hang with the Kobler clan today!

Back on the baby front... We have another appointment for a third ultrasound next Thursday and we will for sure keep you guys up to date with the process. We're just praying for continued normal results and that our little seahorse grows and grows and grows until eight months from now that we're able to hold him or her in our arms. We feel so blessed to be able to go through this experience so far virtually unscathed and are just hoping that this trend continues. We know that it is ultimately in God's hands and we have the ultimate faith that He will provide the perfect outcome. We thank you guys so much for following along with us on this journey, checking in, sending us encouragement and just letting us know that you're there for us.