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Monday, July 21, 2014

Mandi Monday: My Favorite Exercises

Ronnie and I do what we can to keep working out interesting. Just like with most things in my life, I get bored doing the same thing for weeks on end...even exercises within our class that we take can get boring. So I try to switch it up. Within all the exercises we do, a couple are ones I always come back to because I feel they're the most effective.

Clean and Presses - I love me some clean and presses. We do clean and presses most days in our class, specifically with kettle bells. The beauty of a clean and press is that it works a lot of muscles, lower and upper body, and it really gets your heart rate up.

Straddle Jumps - We do them on a riser, 4 high. You stand on the riser, jump down so your feet straddle the bench (the narrow way), hit your tush to the bench, and jump back up. You repeat until you feel like you're going to die, and then keep going. It is some of the best cardio, in my opinion.

Plyo Pushups - We do these on a riser, 4 high, also. You put one hand on the floor, one on the riser, do a pushup, and then push off to switch which hand is on the riser and which is on the floor. You push off hard enough so that both hands are off the riser/floor at the same time. These are hard after a few sets. They get you breathing and your upper body burning.

Frog Jumps - These, for me, are one of the best ways to get my legs dead and heart rate up, fast. All you do is jump forward, landing in a squat. They are rough...especially on fatigued legs!

Burpees - I like that you can switch up burpees. I like that you can do normal burpees, or that you can add to them. My favorite is doing a burpee (putting your chest to the ground when you're down) and when you jump up, instead of just jumping into the air, I like jumping up onto a riser. The best part about burpees, though, is that you can modify them a lot of different ways, so you can keep them from getting boring.

Jack Hovers - For these you hold a hover, and you open and close your feet (like you were if you were standing up to do jump and jacks). The key is to keep your tush down and hold your torso as still as possible. I like these because they are a little more challenging than a standard hover, yet the time passes faster.

Plyo Lunges - These are lunges, but instead of just stepping back or forward when you switch legs, you jump to switch (with no stepping a foot down in between). You lunge forward with your left leg, and jump, switch so your left leg is back and right is front, and land like that. I love these because they get your legs burning and your heart rate up. I double dog dare you to try to do these for 2 minutes straight.

Running - Ok, this one is kind of obvious to make the list, but hear me out. I love running. Well actually, I love the feeling after a run. During a run, I don't really love running! Ha. Anyways, what I love about running is that you have options: long runs, short runs, speed work, trail runs, hill sprints, you name it.

There you have 'em...exercises I always come back to, and exercises we do at least once a week (most of these we do 3-4 times a week). They are good ones because most of them you can do at home. Give them a try sometime. Oh, and if you can do plyo lunges for 2 minutes straight, no breaks and WITH the jump, leave a comment and I will send you a virtual high-five because you are super human!

Friday, July 18, 2014

Yummy Summer Recipe: Quinoa Bowls

I love food. I love looking at recipes, cooking, and most of all, EATING good food. We try to eat pretty healthy around the Sharpe household, so I'm always on the hunt for delicious, yet healthy recipes. Thankfully none of us, including Mckenna, are picky, so it leaves a world of possibility. I like food that is easy, quick, and includes a variety of colors and textures, as well as being packed with healthy fats, protein, and carbs. Protein is a big one for us as I try to eat around 110g a day and Ronnie tries to eat around 180g a day.

In my daily scouring of Pinterest this morning, I stumbled upon quinoa bowl recipes (search sometime on Pinterest for "Quinoa Bowl Recipes". You'll drool. I promise). I found a million different, mouth-watering recipes for "quinoa bowls" - essentially quinoa, in a bowl, with a variety of different additional ingredient options.

This picture caught my eye (because, well, how couldn't it?!):
It linked to this recipe

INGREDIENTS

  • 1 cup quinoa
  • 1 tbsp olive oil
  • 1/4 cup minced onion
  • 1 clove garlic, minced
  • 2 cans (15 oz each) black beans, rinsed and drained
  • 1/4 cup chopped fresh cilantro
  • 1/4 tsp chili powder (mild)
  • Pinch of cayenne pepper (spicy)
  • 1/4 cup fresh lime juice
  • 1 cup shredded lettuce
  • Salt

OPTIONAL TOPPING INGREDIENTS

  • Grated cheddar or jack cheese
  • Sour cream or Greek yogurt
  • Pico de gallo or salsa
  • Diced seeded tomatoes
  • Hot sauce or sriracha
  • Sliced avocado
  • Guacamole
  • Corn
I didn't have many of those things in my fridge, and didn't want to use some of them, so I did what any good fridge-scavenger would do...I dug through my leftovers and made it up as I went along...I'm pretty technical like that when it comes to cooking ;-)

In my bowl I included:

2 oz Cooked Quinoa
1/8 c Diced Avocado
1/3 c "Santa Fe" mix (a frozen bag of black beans, corn, peppers and onions)
4 oz Shredded Chicken
1/8 c Shredded Mexican Cheese
1 tbsp Organic Salsa

Grams from Fat: 13; Protein: 32; Carbohydrate: 27
Total Calories: 363

I mixed together the quinoa, Santa Fe mix, Chicken, and cheese, and microwaved it until it was hot. Then stirred in the salsa and avocado.

I thought it would be good. But it far exceeded my expectations. Ronnie didn't want any when I told him what I was making, as he had other leftovers in mind, but I could tell he had MAJOR lunch envy when he looked at what Mckenna and I got to eat for lunch. I could eat it for one meal a day, at least for a few weeks, before getting sick of it. Mckenna devoured her whole bowl (at least what wasn't on the floor - warning if you make it for a toddler: it was probably the messiest meal she's had in a long time). 

We don't very often share recipes here, but I will try to get better...as it's always nice to make a recipe that someone else has already been the guinea pig for!! 

Have you had a yummy quinoa bowl at home or at a restaurant? If so, hook a sister up with some recipe ideas by posting it in the comment section!

Thursday, July 17, 2014

Thankful Thursday: Partner & Monsoons

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 good parenting partner. Ronnie is a better daddy than I am a mommy, by far!! I am so thankful my parenting partner is not only a great daddy, but a great model for how I can be a better mommy.

I’m thankful for cheese…specifically pepper jack. It is so yummy!! I could eat it all day…but then I would weigh 2483290 lbs, so I do ration it a bit ;-)

I’m thankful for cloudy days. Summers here can be HOT, but cloudy days make for a nice little break and give us the ability to be outside more throughout the day. We’ve had two cloudy mornings this week, and it’s been glorious. Mckenna and I went to the zoo both mornings.

Ronnie's List:

I'm thankful for monsoons. I absolutely love the power and awesomeness of Arizona monsoons. They come through quickly, rain down like crazy, maybe snap a few trees in half and then they're gone! It of course cools things off in the summer, which is nice, but just taking in the storm visually is what I love.

I'm thankful for cashews. I've been snacking on a lot of cashews lately and I love every minute of it. The crispy yet soft nature combined with the saltiness is simply awesome. I probably shouldn't eat them quite as much as I do, but I do not have much self-control around them.

I'm thankful for more family in town. My mother-in-law's brother will be spending some time in AZ this summer and it's going to be very nice having Uncle Brad around. Mckenna met Uncle Brad for the first time yesterday, and I can already tell that she'll warm up fast to him. He's a fun guy and I look forward to getting to know him better myself.

What are you thankful for today?

Monday, July 14, 2014

Mckenna Monday: Big Girl Bed

Usually Monday's are my time to post updates, but Mckenna is really excited to share a new update in her life, so, here she is...

When my mommy, daddy, Nana, Papi, and I went camping, my mommy got me a special new bed, a toddler cot, for the tent. I usually sleep in a pack n play when I'm not in my bed, but mommy said it wouldn't fit in a tent. So I got a cool new bed. I practiced sleeping in it one time before we left and I did great. And then I did a good job sleeping in it when we were living like animals in the woods.

So when we got home my mommy and daddy asked me if I wanted to turn my bed into a big girl bed. I said, "WHAT? You make my bed a big girl bed!?" And they did! They took off the front of my bed and put on a little bar. Then mommy and I went and bought new sheets. I wanted sparkly sheets, but we found some blue ones that were a little shiny, so we bought those.

For a long time now my door has been opening when it's time to get up. Before I would yell and yell for them from my bed, sometimes for a long time, until it was time to wake up at 6AM. So magic started opening my door when I could get up. That way, if I roll over and the door's open, I know they'll come. If I roll over and the door's closed, I know I should roll back over and go back to sleep.

Well when we made my big girl bed, magic still opens my door. I look over and if magic opened my door, then I get up and can go into my mommy and daddy's room and if I kiss them on the lips, they wake up too. But if my door is closed I don't get out of my bed.

For the past week I have done really well. I only get out of bed if the door is open. This morning I got a little confused because I yelled and said I was awake and no one said anything back so I went into mommy and daddy's room and my mommy made me go back to my bed, but she was nice and laid with me til it was time to wake up. Hmm...maybe I should try that again! Wait, no, my mommy said, "no no no, we stay in our bed til the door opens." Well, maybe I can give it a shot. I like to try things at least once to see if they'll say, "yes" or "no."

My favorite thing about my new bed is that mommy and daddy sit or lay on it with me! Before my mommy sometimes would climb into my crib with me to make me giggle. But now every night I lay in bed, and we read my book in there! And my animals have a place to sleep too. Oh and I think it's pretty fun to get in and out all by myself!!!

Anyways, I'm really excited about my new bed!


Wednesday, July 9, 2014

Power Inverter for "Powerless" Treatments

This past 4th of July weekend the family and I took off up north to escape the 100+ degree heat here in beautiful Phoenix. We camped about 10 miles north of Strawberry, AZ at 7800 feet complete with tents, shelter for eating, propane, camp fires (kind of), s'mores, no bathrooms and no electricity. No electricity generally makes it tough to live the CF life as power is generally required for most of our treatment regiment. I use a inCourage Vest system and a Mobilare 50psi compressor for all 3 or 4 of my treatment sets, so for me, electricity is a must. I haven't been camping for years and years without a cabin full of 120v outlets, so I've never needed to come up with a solution for electricity before. That is, until we decided to "rough it" this past weekend.

Here was my solution:

Pictured above is the Wagan 1500W Power Inverter. I purchased it from Fry's Electronics and if you're interested in ordering one for yourself, you can see more info by clicking here

A brief rundown of the nitty gritty...
Price: 179.99
Continuous Use: 1500W
Peak Surge Power: 3600W
AC Voltage Output: 110V
Optimum Efficiency: 90.00%
No Load Current Draw: less than 0.95A
Input Voltage Range: 10V to 15V
Low Battery Alarm: DC 10.5 +/- 0.5V
Auto Low Battery Shutdown: DC 9.5 +/- 0.5V
Cooling Fan: Yes
AC Receptacles: Triple

Now, I bought the 1500W which was way more wattage than required to run my Vest and neb compressor. My Vest requires 500W and I'm assuming that my compressor requires much less than that. A step down to the 1000W inverter only provides two AC receptacles and I wanted the third in case I had to charge my phone or make a cup of coffee while I did my treatments :) Plus, having 1500W gave me the option to use the power inverter for a variety of other things...

Options are good
I had the inverter installed at a local shop called Direct Audio and the job was done in less than 3 hours and cost me 85 bucks out the door. They installed it under the driver's side seat with the AC outlets facing the backseat. I usually had my Vest and compressor plugged in and sitting on the ground near me while I sat in a chair. When it was raining, I simply sat in the front seat and left the equipment in the backseat. (I've also already done a full treatment set on the way to the airport while I was driving. Talk about a time saver!!)

Surrounded by pines!

Grounded.
Nice view during treatment time
When I did my treatments I always had the car running as to not run the chance of draining my battery (you also must turn the power to the inverter off when not in use). That was recommended to me by the guy who installed the inverter and it certainly made sense to me. So, as long as I had fuel in the tank, I was in the clear to do my treatments whenever I felt like it. Having the freedom to go camping and not have the worry about keeping my health as the number one priority was definitely worth the price tag of 264.99+tax.

Mckenna loves treatment time with Daddy

A couple other answers to questions I have been asked:

I didn't worry about sterilizing my neb cups in between treatment sets. I figured it would do no more harm than the 10+ years I washed them in the dishwasher about once a month. If I was worried about it however, I could have boiled water or plugged in my baby bottle sterilizer.

You can keep your Pulmozyme cold in the same place you keep your food cold. Ours was in a cooler full of ice.

I wasn't worried about disturbing other campers. We were very secluded. Even so, it wouldn't have bothered me and would have given me the opportunity for a little CF awareness ;)

I went to the bathroom in a hole that I dug by a tree. It was glorious.

I didn't feel a major difference in the power supplied to my Vest or compressor. I could possibly be convinced that my Vest was a bit weaker, but it wasn't super apparent. 

Final Thoughts:

The inverter did it's job and I would give it two big thumbs up. It will certainly provide more freedom and options down the road and I am very pleased with my decision to pull the trigger and pay the money. I would do it again in a heartbeat.

Mckenna even got in on the picture taking action!
Please leave me any questions you may have about the power inverter and I will do my best to answer them.

Tuesday, July 8, 2014

Top Ten Tuesday: Grammy's House

It's not Monday, but it's Mandi here. I didn't write yesterday, so I figured I'd write today. I was en route to visit my Grammy in Florida, so I didn't post, but that spurred on my idea for today's post...the top ten things I love about my Grammy's house!

10. The location - You can't beat being walking distance to a beach, in the sunny state of Florida!

9. The snacks - My grammy always has the yummiest snacks. When we were little, it was an abundant supply of gum balls and lucky charms. Now it's the latest divine invention on the supermarket shelves. I think I get fatter just walking in the door. I'm currently 10 Hershey's Extra Creamy Milk Chocolate with Toffee and Almonds deep.

8. The meals - We eat well here, from yummy home-cooked meals like Goulash to eating out at fun beachside restaurants. There's always good company and delicious food on the table.

7. The smell - Everyone's house has a signature smell. My grammy's house has smelled the same way for all 27 years I've known her (and that's been two different houses). The smell is so glorious I would make an air freshener out of it and make my own house smell like it if I could. The smell is one that makes memories flood my mind and brings a smile to my face.

6. The decorations - The decorations are older than I am and each has a story. I remember playing with different knick knacks when I was 2. Each piece is unique and has a story to tell (well my Grammy tells the story, the piece just sits there)...I love hearing the history behind each.

5. The weather - Whether it's sunny or rainy, I love the weather. I love that it rains most days, usually just for a little bit. In Arizona we never see rain, so it's really refreshing to hear raindrops on the windows and hunker down inside.

4. The sounds - I love the music of the bugs chirping outside and the distinct sound of the front door closing. I love to hate the phone that rings as loud as a fire truck siren and the shrieking of my grammy's hearing aid when I hug her on the "wrong side".

3. The visitors - Grammy's house always has "extras"...bonuses, really. My Aunt Susan comes down to hang out. My Aunt Jo comes over from next door to say hi. My great uncle and aunt used to live next door and we used to play there and listen to stories. The company is always awesome!

2. The memories - We've been coming to St. Augustine Beach since I was born. My grammy's house and the house next door (that my great aunt lives in) were the homes of my great grandmother and my great great aunt. When we started coming, it was that generation living in the houses. When I was in grade school, it became my grammy and her sister living in the houses. I know this house better than my own. This house has been the only consistence house I've ever "had". We moved around a lot as kids (about every 3 years), so my house was forever changing. But not grammy's! One to two times a year I came to a house that never changed. It stayed its wonderful, warm, inviting self for 27 years. I know which floor boards make a little more noise. I know which stool will fall over if you sit on it wrong. I know which rules can be bent, and which never to break. I know which blanket I can cover up with when I'm chilly. I know which light switches do what. I know exactly where I can run. I have 27 years of memories in this house and this neighborhood.

1. My grammy - I've posted about my grammy before, but she's one of a kind. Time with her is time always well spent. We are always giggling. We are always smiling. We are always sharing a part of ourselves with the other. She brings me so much joy and I wish I could see her more than a week or two a year.

Monday, June 30, 2014

Mandi Monday: Lessons Learned from the Movies

Ronnie and I have been watching more movies lately. Ronnie loves movies. I usually fall asleep about half way through. But I am trying to (wo)man up and watch more movies for my hubby's sake.

Anyways, so we watched a movie the other night called About Time. The movie is about a young man who finds out he can travel back in time, just like his father and grandfather. He uses his powers from time to time to make his life better or fix a situation to play out a little better. He ages through different life stages, all the while using his power to alter things. At the end of the movie, he learns a trick his dad learned from his many years, and that was to relive every day again, except when he lives it the second time, he stops and notices all the good things he missed the first time being caught up in the chaos and frustrations of the day. He perfected that. And then he added to that tip. He just lived each day that way, the first time.

This lesson hit me hard. As you watched the same day play out twice, the first time it appeared stressful and chaotic. The second time it was so fun and beautiful. But it was the same exact day, conversations and interactions. The only thing that changed was his perspective. I loved to see this. We hear all the time how our perspective can "change" a situation. It doesn't actually CHANGE what's unfolding but if we view it differently is can sure SEEM different. You hear people seeing things half empty or half full. But once I saw it played out in this movie, I really saw the impact.

Ronnie lives his days like this. And I now know why he's always happy. While I often am frustrated by how we are stuck in traffic or something is moving slowly, he instead sees it as a nice chance to take in the beautiful sunset. He's thankful he had the extra time to appreciate it. I'll get frustrated that Mckenna is holding us up when we are late by insisting to put on her own shoes, the ones she never can do alone, the ones I can barely put on. Ronnie will sit and smile, enjoying watching her try, try again as she clumsily fumbles with her cute, little, chubby toddler fingers. Ronnie and I will sit in the same room, live through the same circumstance, and he perspective is always that of such delight. In fact, this is part of why I fell in love with him. It's what sets him apart. I even thought enough about it to include it in my wedding vows where I said:


You view the world through a lens that is unique, refreshing, and most of all, infectious. To you each day is a blessing and each hour is a gift to be cherished. Because of that, you have taught me how to slow down and truly take life in. I love that you never let me miss a beautiful sunset, hurry through a good cup of coffee, or allow days pass without reminding me how blessed we are.

This movie showed me exactly how he has the perspective he does, and it gave me a goal to work towards. That night I went and grabbed Mckenna from her bed and brought her into ours to snuggle her...granted, we all slept terribly, so I brought her back to her own bed around 3AM...but I tried. Baby steps :)

Anyways, watch the movie if you haven't seen it (Redbox has it). It's a great reminder; a valuable lesson. I hope one day I can view life through Ronnie's (or the main character's) lens, as I think it makes life that much more grand!

Wednesday, June 25, 2014

Enlightening Conversation About Vertex Results

I thought it would be good to share a conversation I had today with a momma in the community that wasn't exactly pleased with my thoughts/comments/commentary on the Vertex announcement yesterday. Many of you may feel the same way...
"I am upset at the comments you made yesterday and the one today."
What specifically upset you? (see paragraph towards the end of this post for her response to this question)
"I am surprised that you would post things that could upset parents and other CF'ERS that have new hope. I understand that you have strong feelings and emotions about this combo and they are rightfully yours to have."
Right. And I'll always be honest, even if that means a few feathers are ruffled or I have some push back. And if posting something accurate and truthful on FB takes away the hope of some, I am sorry. With that said, I also included parts in my statement that would support the hope felt like "There are also people who blew the doors off of old PFT results!!!!!" or "I'm not saying that this is not good news." or "And I've always been consistent in saying that we do not need to see positive numbers for it to be a success. Remaining steady would be a BIG WIN for the CF community."
"However, the post yesterday was used by others to continue to be hateful to many in the community."
I cannot control what others do, and I will never censor myself based upon the possibility of others using my words out of context. That would not be authentic and I certainly won't put on a false facade - with what I say or what I don't.
"It may not be what you intended but it came across as you being mad that you were not able to get them at a time when you were younger."
Honestly, I have no clue how that came across to you in what I said. Do you think I would volunteer 1000's of hours a year in the CF community, if I were mad or bitter in any way at the opportunities afforded to the younger generation? Does that sound like a guy who thinks "life isn't fair"? I thought that was pretty clear when I said, "My biggest goal, and frankly why I got so involved with the CF community, is to make the life experience of the next generation of CFers, and the generation after that, better than my own. I don't want to see the CF patients of the 90's, 00's and 10's experience the same struggles as I did, a patient of the 80's."
"I have always respected you and seen you as such a godly man. (I even spoke of how you were such to my mother yesterday when everyone else was posting hateful comments)."
I'm certainly happy to hear that you think (or thought?) of me in that way. I do my best to show God's love through my approach and interaction with others, and unfortunately, I'm pretty sure I fail everyday. I can assure you if I served a God that wasn't gracious, I'd be screwed.
"To see your post after saying these things was disappointing. I hope that you see that your posts can be hurtful and truly upsetting to some."
Again, I am sorry if anyone was hurt by my commentary yesterday. This was in direct response to seeing statements like "I'll finally be able to breathe again" or "This may be my last hospital stay ever!!" or "We'll basically be cured." or "I can't wait to take those pills and for this to all be over!". We still have a long way to go. As it stands right now, the combo drugs will not support the statements above for the majority of people with CF. Less exacerbations? Probably. Less frequent hospital stays? Probably. Maintain lung function for longer? Probably. Cure? No. No hospital stays ever again? Probably not. No more treatments? Probably not.
"You have been given a wonderful platform to be such a strong witness for the Lord. I am always so thankful for your standing up for what is right and true."
I will continue to do so.
"Please know that this is not intended to be mean, just expressing how this has made one Christian woman feel."
Not a problem. I didn't think it was mean at all. It's hard to articulate feelings through an online medium such as FB. Expressing oneself, and having different feelings towards the same object/result/person is what personal expression is all about.
"I want this combo to give you decades more to work for the Lord and be with your family as much as I want it for my little girl."
Amen. I want the combo to work for your little girl with every fiber of my being. I would gladly give up any potential decades I have left to see that happen.
"On a side note, the lawsuit against Vertex being brought forward by the state of MA makes me question the validity considering their health care system. Just a thought."
The lawsuit is about people purchasing the stock based on "grossly overstated" results by said company and then losing 100's of thousands of dollars when that information was redacted...all the while executives of said company potentially made 100's of thousands of dollars by selling a portion of their shares before the results were corrected.
"I think the most upsetting part was saying I hate to be that guy type of comment. It kind of starts you off with a negative attitude. I did not see the comments from people that you mentioned. I do not think this is the end of treatments or anything for my daughter. But I do think it could keep her where she is until something better comes along which is more than I've had before. I know that most parents feel hope but know this is not a cure. For those of us who have a realistic view of the combo, the post was like someone coming into the first glimmer of hope we've had and screaming "just kidding!". Because we look up to you so much....I don't think you are bitter and that's why I even said something because it seemed out of character. I know you can't control what others do; however, if you had read what some were saying you might have held off on.that comment for a few days. It's ugly out there...and it just gets worse. It's hard for a parent of a child with CF that deals so much to see the negativity we've seen from this announcement. There are so many that have been so hateful about this not helping them that they don't want anyone else to have hope. It seems like such a miserable life for them and it's hard to understand. Your posts may not have upset me on another day but after dealing with all the negativity it was hard to see yours. I do not look at you differently now. I just wanted to let you know how it is from a mommy's view right now. There was such excitement for Kalydeco and we can't have the same joy that's all we want. I know you want that too. Thanks for responding! And I want address the other comments on the lost because I don't feel it's okay to stir the pot. But feel free to share this without my name." 
Totally understand where you are coming from [withheld]. I can see why this may have felt like I was piling on. It was never intended to be that way. I was trying to provide some history and context to a community that has felt let down many times in the past based on announcements like this only to discover it's not what they thought it would be. I'm sure I could have worded it better or, as you suggested, wait for the flames to die down a bit before throwing some gasoline on them.
On a side note: Did you know that I am currently on the drug and I think it helps? Maybe that would have been beneficial for me to say?
"I had no idea. I am thankful you are and are doing well on it! I hope it keeps you healthy and at home with your family more so than not! It would probably put out the fire if you said that ;)"
Haha, maybe I'll mention it then. I didn't see PFT improvement, but I think it gave me the ability to fight off infection quicker and I have remained stable for longer periods of time.

Proceed with Caution - Vertex's Big News

For those of you who haven't heard, Vertex announced the results of it's big Phase III combo drug that may cover roughly 50% of the community. You can read the press release here.

I'm so pumped to see the joy and hope exhibited by so many in the CF community today. I hate to "be that guy", but I did want to throw out a bit of context and history to be sure that we are all managing our expectations:

1. The Phase 3 study showed an average increase in lung function of 3% Context: Cayston showed a 2% increase in it's Phase 3 head-to-head study against TIS.

2. The results have not been completely vetted by those outside of Vertex. Context: This is the same company that is now being sued for "grossly overstated" results in the Phase 2 trial of the combo drugs - http://ow.ly/yp7L2

3. About 46 people dropped out of the Phase 3 study because of complications. Context: Extrapolate this to the potential users of this combo, and you'd have around 1400 people with DDF508 who still wouldn't benefit from this drug. You'd also have to include those who saw no benefit but elected to stay in the trial. (NOTE: There are also people who blew the doors off of old PFT results!!!!!)

I could go on, but I'm feeling like Captain Buzzkill. I just see a lot of celebrating without facts (or misinformation) and want peeps out there to understand that we have a long way to go for the next generation of CFers. With that said, if this drug has the potential to in essence halt the decline in lung function at an early age, I'd cut off my left arm if that meant that everyone had access to it.

#captainbuzzkill

Added after reading feedback: Yes, celebrate!! Any move towards a better life experience while managing cystic fibrosis is a win. I'm not saying that this is not good news. Selfishly, anything that could possibly extend my life even a minute with my wife and daughter, is something worth being excited about. My biggest goal, and frankly why I got so involved with the CF community, is to make the life experience of the next generation of CFers, and the generation after that, better than my own. I don't want to see the CF patients of the 90's, 00's and 10's experience the same struggles as I did, a patient of the 80's. Progress doesn't only come in the form of a pill, but I'll sure as heck take one if/when it does!

And I've always been consistent in saying that we do not need to see positive numbers for it to be a success. Remaining steady would be a BIG WIN for the CF community. Shoot, not having to work so hard to maintain what I currently have is something I'd pay good money for :)


(I took this from my FB page as I know many of you are not friends of mine on there yet you read this blog. I'd love to hear your thoughts)

Thursday, June 19, 2014

Thankful Thursday: Thankful for the Gift and New Adventures

Having plenty of options is usually a good thing in life...especially when it comes growing your family. It's no secret that adding another child to our cherished family of 3 hasn't been easy. Up to this point (in the last 18 months) we have filled you in on our 2 egg retrievals, 1 fresh cycle, 3 cancelled cycles, 1 miscarriage, and 2 failed cycles...as of last week, we unfortunately added the chemical pregnancy (early miscarriage) of two donated embryos to the list.

After our last failed cycle using our last two frozen embryos, we decided that perhaps using our own genetic babies wasn't going to result in holding baby number 2 for us. We found out after discussing our openness and desire to use donor embryos with our doctor that they actually had 2 donated embryos that they would give us, even though we weren't at the top of their waiting list. So within a week of our last failed cycle I was back onto our 8.5 week med protocol. On June 4th we put those little loves in and prayed for a positive outcome. We had an initial blood draw 6 days post transfer and it showed HCG (pregnancy hormone) in my system. We were cautiously excited! Our second blood draw (the official test at 9 days post transfer) still showed HCG, but the numbers hadn't risen properly...a sign that the pregnancy wouldn't continue. Three days later we had another draw and my numbers had dropped...showing the pregnancy for sure would was ending. They call it a chemical pregnancy, which is just a really, really early miscarriage.

Disappointment. Grief.

This one was a major disappointment, they all are. But this one stung even more. In fact it was downright heartbreaking. The way it all came together made it feel so right; so perfect. I fell in love with those little frozen babies from the time I heard about them. I was so ready to be their mommy and so grateful for this gift from someone we had never met. I cherished every minute they were with me, and just as with all our other losses, they will always have a little piece of my heart.

So now what? Onward and upward, friends. All we can do is choose to rejoice in our current circumstances and trust that God has a plan. Our attitude will not change our present situation, so we are choosing joy and moving forward with anticipation. There are so many incredible ways to grow a family, and we will continue to press on until we feel our family is complete...although I will say with every passing failure, I do become more and more comfortable with the idea of staying our sweet little family of three. We sure are blessed to be such a wonderful trio!!

SO while we are officially taking a little bit of time away from IVF medications (oh boy am I ready for that!!), we are pursuing another dream. We are pursuing our dream of becoming foster parents. We have always dreamed of fostering, we just planned to do it "once our family was complete." However, it's becoming more and more apparent that perhaps God's vision of complete and ours is different, and so we are no longer pushing off the call in our hearts to help little loves in need of a loving place to go. We have started the process to get certified and are excited to see where it takes us, and who it brings into our lives. Right now we are mentally preparing ourselves to foster for the sake of fostering, but are open (and excited!!) to foster to adopt if God presents that opportunity for us. All we know as of now is that we have a call in our hearts and a lot of love to give, so we are ready for whatever God has planned through the process.

We will keep you posted on this new journey in case it can help others who are looking at options to grow their family or looking to help other families in need.

And as a last note...I heard this song on Monday for the first time, right before we got the confirmation that the pregnancy was ending. It brought my heart a lot of joy and peace. I'm so thankful for songs that perfectly encourage me in times of heartache!

Two verses are my favorite are:

In my wrestling and in my doubts
In my failures You won't walk out
Your great love will lead me through
You are the peace in my troubled sea
You are the peace in my troubled sea


AND

I won't fear what tomorrow brings
With each morning I'll rise and sing
My God's love will lead me through
You are the peace in my troubled sea
You are the peace in my troubled sea


Wednesday, June 18, 2014

Started a New Routine: StrongLifts 5x5

Are you looking for a new routine to breakup the monotony of you current one? Or looking for something that is good for beginners? How about something that only has you lift weights for 3 days a week at 45 minutes a day? Something super easy and straightforward that even has an app that you can use to track your progress? Than I have the workout for you!! (Man, I definitely think they should use me to pitch their free product ;) )

I recently started the StrongLifts 5x5 program and I absolutely love have organized, easy and quick it is. The last thing I want to do in the gym is think, and this take all of the thinking out of it! I downloaded the app to track my progress and to tell me what to do every single workout and even tell me what weight to use. Couldn't be easier.

It's called the 5x5 program because there are only 5 different lifts that you have to "master" and each lift will be done at 5 sets of 5 reps (except for deadlift which is only 1 set of 5). You will only do 3 of those lifts on each day of your workout. That's it.

The five lifts are...

Squat


Deadlift


Bench Press


Overhead Press


Barbell Row



I'll keep you updated on my progress and would love to hear if any of you start this program as well!

Monday, June 16, 2014

Mandi Monday: Happy Father's Day

Happy (belated) Father's Day to all the dads out there! Us girls and moms would struggle to achieve our full potential without a wonderful dad in the picture.

The first father in my life I'd like to thank is my dad. He is a man among men. He was the kind of dad I thank God for every day, as I realized he helped shape me into the bold, hopeful, resilient and happy woman I am today. He showed me that being of high moral character can take you farther in life than any other character trait. He showed me what it means to work hard. He showed me how a husband should treat a wife. He showed me how to take life's punches in stride, head on. He also taught me that love can be best shown through humor and a back rub. I wasn't always the easiest daughter, but he showed me that unconditional love can be sweet and caring, and that it can also be tough love! He always has stood by my side, even when he hasn't agreed with decisions I've made. He's cried with me when I've suffered losses and he's rejoiced with me in my triumphs. A perfect illustration for his support for me was running by my side through marathon training and a marathon, despite his own injuries and discomfort because he told his little girl he would run with her.



The second, and now most important father in my life is Ronnie. When you marry a man, you pray he will be the daddy you always dreamed of for your kids. Ronnie has far surpassed my hopes and dreams as a partner in parenting. Ronnie is the parent by which other parents could be measured. I've never met a parent so patient. Ronnie is the perfect mix of fun, but with clear limits. Mckenna could not adore her daddy any more than she does. When she gets hurt, she wants a daddy snuggle. When she wants to rough house, she looks for him. When she wants a good scare, she looks for the "tickle monster" that is her daddy hiding in random spots in the house.



Happy Father's Day!

Thursday, June 12, 2014

Thankful Thursday: Mexico & Kayaking

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 family time in Mexico. Every summer we do a long weekend with Ronnie’s whole extended family in Rocky Point, Mexico. This year was my favorite yet. Mckenna is a stellar traveler these days, so that helped immensely, and she was just a doll all trip. She had such a blast with all the “cousins” (I think they’re all second cousins technically). It was great spending time with family and watching Mckenna enjoy the trip.

I’m thankful for healthy eating. After a vacation, I realize how much I love eating well. Sure I LOVE junk…probably more than most. I have a sweet tooth that never ends and I can eat more fried food than a grown man. But after eating junk for a long weekend straight, I realize how much I love putting good food into my body. It feels good to be home and eating normally again.

I’m thankful for sleep. I’ve been falling asleep on the couch the last few nights really early (maybe catching up from vacation fun?) and it has been amazing. There’s nothing better than a good night’s sleep!


Ronnie's List:

I'm thankful for a successful trip to Rocky Point. My family has been going down to Mexico for a family reunion of sorts for the past 35+ years. This year, there was 33 of us and I think it's safe to say that we all had a good time. We run like a well oiled machine down there and not an hour goes by that you feel hungry or bored ;)

I'm thankful for summer softball league. We just had our first two games tonight (1-1) and it was nice to get back onto the field and give it all that I got. I am probably the least talented guy on the team, so I always focus on attitude, effort and hustle because that's about the only three things I can control out there!

I'm thankful for kayak rides. Quite possibly my favorite part of the Mexico trip this year was throwing a life jacket on Mckenna and jumping into the kayak. We paddled far out into the ocean with Mckenna leaning back on me the whole time and even giving me a hand with paddling. It was a very awesome way to spend some one-on-one time with her.

What are you thankful for today?

Thursday, June 5, 2014

Thankful Thursday: Voice & Honey

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 workout buddies. I’m blessed to have a hubby who’s always game for a trip to the gym, but I’m also blessed with active friends. As we’ve posted about on the blog, Mckenna took swim lessons recently. I adored her swim teacher, who is a sweetheart and VERY active. So I turned her into a workout buddy. She runs with some friends most days a week (which I’m not bold enough to weasel my way into), so we meet 1-2 times a week at the gym on the days she’s not running. It’s perfect because it means that most days I still am working out with Ronnie, with a few sessions a week with a friend!

I’m thankful for Mckenna’s voice. Mckenna loves music and LOVES to sing songs. I really adore hearing her little voice. She carries a tune about as well as Ronnie and I (which isn’t impressive), but it is so endearing to hear her belting out a song.

I’m thankful for a Grammy who I enjoy. This one sounds silly, but I’m thankful for a Grammy (my mom’s mom) who I can talk to like a friend. I call to chat with my Grammy about once a week, usually in the car on my way to or from work. I know for some calling a grandparent can be a task you check off a to do list. But I am so thankful that I have a Grammy that I simply adore and truly enjoy talking to. We usually joke around and laugh a majority of the call, and I always hang up with a huge smile on my face! She’s one fun lady!!!


Ronnie's List:

I'm thankful for honey. Since we've been trying to eat cleaner lately, yet my sweet tooth still exists, I've been eating honey to get my fix. I've particularly been fond of honey drizzled over frozen fruit. It's quite the treat after dinner!

I'm thankful for organized files. I've gotten much more organized over the years and it sure makes everything much easier. I've recently had to access old files and information and having it all labeled within file folders by date made everything a breeze. Now if only I could keep my desktop clean!

I'm thankful for teeny, tiny cantaloupe. We picked out first melon of the season from the garden and it was a cantaloupe. I had to pick it a bit early because it was starting to burn, and to my surprise, it was still incredibly sweet. I'm looking forward to the bigger one being ready soon now!!

What are you thankful for today?

Tuesday, June 3, 2014

Top Ten Tuesday: Rocky Point

We have our annual family trip to Rocky Point, MX coming up and I couldn't be more excited to head down south of the border! My family has been going for 30+ years and now bringing a family of my own is a dream come true. Here are the top ten things I love about the Rocky Point trip.

The drive down - We usually have 20-25 or so people caravan down at the same time to Mexico and stop at the same places every year. Since half of us are coming from Phoenix and the other half Tucson, we meet at a town called Why before heading down into Mexico. We usually stop at an ice cream shop right on the border before crossing and the taste of that ice cream signals to me the trip has officially begun!

The changes in Sonora - It's been amazing to see the first border town we drive through in Mexico change over the years. They are constantly building and are looking more and more like a "city" instead of a town in a third-world country. Don't get me wrong, they still have mainly dirt roads, plenty of buildings in shambles and are behind about 30 years, but progress is happening.

The first peek at the ocean - On the drive down, you always get the first peek at the ocean at the same spot. I can visualize that scene in my head right now because I have seen it so many times. The desert landscape changes to sand dunes, the dunes seem to roll for miles, and then all of the sudden, a bright blue ocean.

The first breath - I love taking in that sea air after we park the car at the house. The crispness of the air. The humid feeling on the skin. The sounds, the smell; it all brings back so many memories.

The assembly line - After traveling down as a large family for 30+ years, you learn some things. My family has learned to unpack and set up with the best of them. You should see how quickly we can unpack 6-8 cars! People are coming and going in all directions, taking stuff out of the nearest vehicle and then putting it where it needs to go. I'm telling you, we're a machine.

Sand beneath my feet - The first walk on the beach is always nice. We've been going to the same beach house now for about 8 years or so and the beach is literally steps away from the backdoor. Taking that first walk down the beach and dipping my toes into the ocean is always such a treat.

The meals - In Rocky Point, each family is assigned a day in which they take care of preparing and cleaning up each meal. We have many of the same meals each year and I always look forward to them. The dinner nights are usually hamburger/hot dogs, BBQ chicken, Shredded Beef Nachos, Steak and chicken soup. My family is in charge on steak night, so I really have to hone in on my grill skills!

The conversations - I don't get to see my extended family as much as I would like (mostly only on holidays), so it's nice to be able to catch up with everyone while we're down there. We have fives days to get all of the updates on what's going on with everything and there is always a surprise or two each year that I had no clue of regarding someone in the fam.

The bread/tortillas - I love the fresh tortillas and bread that we get each year. I know bakeries are here in AZ as well, but there is just something about the bakeries in MX that get me every time. The smell and the variety is always so awesome to take in. Plus, it always seems so cheap...and yummy.

The joy - Everyone has so much fun on this trip. And now, I especially love to see Mckenna running around with her cousins with a gigantic grin on her face. She loves the ocean, sand, sun and everything else that comes along with this trip.

Writing this blog post has me even more excited than before! We are so blessed to be able to do this each year and the fact that I'm taking my own young family is a dream come true :)