Friday, May 2, 2014

Tune-Up Time Tips

Hi ho, hi ho, it's off to the hospital we go...

Welp, it's tune-up time again in the Sharpe household...almost.

Ronnie has been feeling off for the last month or so. He had a cold, then we had an interesting lung pain episode that landed us in the ER (I'll have him write on that later), capped off by another cold, and recurrent lung pain. Ronnie decided to give himself a week to recover from his series of colds and scheduled a clinic appointment to see what he could uncover. Clinic was on Monday, and the consensus was that it was time for a tune-up. Unfortunately, he had a work/speaking obligation that he couldn't get out of, so he headed to Maine Tuesday night, got in today, and called to request a bed. Now we wait for a bed to be available and it's go time.

I will let him write more about his most recent symptoms and his decision to go in...but I'll post some tips we've come to learn to make hospital stays easier...specifically tune-ups when one spouse is left to be a single-parent.

Take time off - If at all possible, take some vacation days. I tried to continue working my normal hours while Ronnie was in the big house, but I found I was either working, sleeping, or being a mommy. I was getting up early to work, working during nap time, and working after she went down until I fell asleep. Being a "single parent" around the clock is somehow way more exhausting than having help even from post-work hours through bedtime. I take a couple days off a week, so I can spread my hours out over more days, and man it helps relieve stress.

Don't refuse help - This is a hard one, and one I don't do very well, but take help when it is offered. It's really nice to feel like you can do it all alone, and while you probably can, you don't have to prove it! Have your friend take your kid(s) for an hour or two, allow family to take meals, go to the gym for the "free" child care for the max amount of time some days! If help is offered, take it. And if it isn't offered but you need it, ASK!

Go to the gym - I just mentioned this one above, but it's so crucial I'll give it a bullet point all of its own. Go to the gym if you have a gym with child care. Going to the gym is good for you. It helps relieve stress and those post-workout endorphins can make the rest of the day feel manageable. An added bonus is that there is childcare there for you. If you don't feel like getting a major workout, go anyways and just stroll on the treadmill while you watch TV. I am not too proud to admit I do this...a lot. Mckenna gets to play with friends, and I get a little break. Win-win!

Do something special - This one is both for sanity and for shaping a mindset. Two stays ago I took Mckenna to fun places in our area that we usually don't go to. The last stay Mckenna and I took a trip to Florida to see my Grammy and go to Disney World. It helps pass some of the time, but it also helps to shape Mckenna's, and my, for that matter, mindset. One of my most important jobs as it pertains to hospital stays is to give Mckenna a healthy mindset regarding them. They are our family's reality. And while it certainly isn't ideal to have Ronnie away from home, a hospital stay is beneficial for all of us. Ronnie and I know this because we know that hospital stays keep him healthy, and ultimately, keep him alive. So we embrace them! Mckenna will understand this one day. But until she's old enough to understand all of that, I can help her at least see that a lot of fun can be had, even if we are missing Daddy!

Put on a happy face - This one is a fine line. Certainly we cannot hide how we feel, and of course we shouldn't just suppress true emotions and feelings. That said, at some point, you have to suck it up and put on a happy face, at least until it's over. I am still working on perfecting this one. Some of our first tune-ups after having Mckenna I didn't do this. I shared all of my fears, frustrations, and struggles with Ronnie during his stay. However, I learned that sharing those things didn't make them go away...all they did do was burden Ronnie. He then felt even more guilty about being gone than he already did, which just makes the stay miserable for him. And while I got to verbalize how I felt, it didn't make the feelings go away. And actually saying it out loud almost made the feelings feel more real...bigger in a way...more a reality than a feeling. It raises tension and isn't productive. I've found two ways to cope that did work. The first? Put on a happy face, at least until it's over, and then share some of the frustrations that unfolded. This allows me to let Ronnie know how I feel, but not in real time in a way that makes him feel more burdened, or rushed and pressured to leave. The second? Talk to another CF wife or friend. Telling Ronnie my frustrations didn't really help. It just made us both more tense. But talking to another CF wife is glorious. They can offer suggestions and tips, and they actually know exactly what you're feeling.

Look at the light at the end of the tunnel - Tune-ups are very short term. They can feel long and drag on at the time, but in hindsight, it's just a few weeks (usually), which in the grand-scheme of things is very minor for the benefits. Focus on the end goal and benefits, and the stay feels well worth the couple weeks of inconvenience!

I'm pretty sure I put this list together more for myself than anyone else, to be honest. When I know a hospital stay is coming I mentally gear up and put together an action plan of sorts. The above is my self talk and action plan! Let's do this!




Thursday, May 1, 2014

Thankful Thursday: Song Books & Wildcats

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 “minor” injuries. My brother, Josh, was in a motorcycle accident over the weekend, and thankfully “only” suffered a broken femur. Of course a broken femur hurts like heck and is a major inconvenience, but we are all really thankful that it wasn’t anything more life threatening!

I’m thankful for Toddy. My loving hubby noticed I was making coffee, letting it cool, and then making iced coffee with it. In all his awesomeness he pulled out our cold brew coffee maker (Toddy) and made me a DELICIOUS alternative). It is SOOO good I can’t get enough.

I’m thankful for song books. Ronnie’s mom has gotten Mckenna two different song books, one has “CDs” and the other looks like an MP3 player of some sort. Mckenna LOVES them. Before bed, she often opts to sing songs (you match the song to the lyrics on a page of a book) vs reading a book. I absolutely love hearing her sing songs. Her little minnie mouse voice is so adorable!!

Ronnie's List:

I'm thankful for the opportunity to travel and speak with parents in the CF community. It's always so enjoyable to chat with folks who are in the same shoes that my mom was in and share all of the successes and failures that I had growing up. There are some things that "you don't know until you know" and hopefully, I can be the one to let them know :)

I'm thankful for fellow Wildcats. Of all places in the world today, I saw a fellow Arizona Wildcat in the Portland, ME airport today. We acknowledged each other with a slight nod. Even better, the gate agent scanned my boarding pass and said "Bear Down!".

I'm thankful for Prison Break. Welcome to the latest show that I've been hooked on on Netflix. It's a great way to relax at night before bedtime :)

Monday, April 28, 2014

Learning to Play and Playing to Learn

We've mentioned in some past posts that Mckenna has been doing different classes and lessons to give her something fun to do, pass some time, and learn some new skills. She absolutely loves her different classes! I thought it would be fun to post some videos from last week to show you all the fun (and chaos) that ensues!

First up: Dance class. This is a quick 45 minute class that really is more about movement that "dancing". They practice moving across the floor in all different ways (you know, crawl like a bear, hop like bunnies, gallop like horses...) The teach is trying to teach them choreography, in this video, which really just results in the kids all standing there staring at her by the end of the 5 minute song.




Next up is sports class. In sports class she learns all different sports, from lacrosse to football to golf, but they also do little obstacle courses and movement activities. In this video, she's learning soccer...and kicking cones around.



And then there are her ISR swim lessons. They are 10 minutes a day for 4-6 weeks. We didn't sign her up for these for her enjoyment; more for her safety. I have heard some kids hate them, and cry most the lesson when they first start out, but Mckenna has loved it all along...maybe because she's pretty good at it (don't we all like things we rock at?!) She lays so still and is so calm, it's amazing!



Thursday, April 24, 2014

Thankful Thursday: Toddy & ISR

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 wonderful husband. I know I’m not the only wife that thinks they have the best husband in the whole world, but I think I have the best husband in the world! I am so blessed to have a man by my side that is twice the spouse I will ever be.

I’m thankful for a little swimmer. Mckenna started ISR swim lessons on Monday, and is a super star! She is shockingly good at it…her instructor is even a bit shocked. She is on day 4 of lessons, but is doing skills that most kids are doing twice as far (if not farther) into lessons. And I’m not thankful for a swimmer because I’m hoping she goes to the Olympics...I’m just thankful for a swimmer because I want her to be ok if she ever falls into a body of water!

I’m thankful for Toddy. We have been making cold brew coffee for iced coffee…and MMM MMM MMM!! I could drink it all day long. If you’ve never tried it, you can get a Toddy maker for $30, and it’s worth every penny.


Ronnie's List:

I'm thankful for the Toddy coffee maker. I noticed that Mandi was drinking more iced coffee lately, but she was brewing hot coffee first and letting it cool before making her drink. I got our slow brew Toddy coffee maker down from the cupboard and told her to give it a try instead. It was a hit!! She loved it. So I guess I'm thankful for the smile it put on my wife's face more than anything.

I'm thankful for ISR lessons. Mckenna just started "survival" lessons this week, and it's so cool to see how quickly she's progressing. She was floating on her back by the second day and remains incredibly calm during the process. I'm excited to see where she is and what she can do in a few weeks!!

I'm thankful for time with Mandi. We've recently started having a nice young woman come over and hang out with Mckenna for a few hours on Thursday to let Mandi and I have some time to work together. It's amazing how little we're able to work together even though we both work out of the same house! It really helps us focus on a few action items and knock them out.

Monday, April 21, 2014

Fun with Classes and Lessons

We have recently started introducing Mckenna to different sports/activities through classes and lessons. It has been so fun to watch her learn new skills, try new things, and feel accomplished through her learning and growth.

Our local rec center has a lot of great classes for reasonable prices. Each class usually lasts 4-5 weeks, and is 1 time a week for 45 minutes. So she's getting to learn/try something, without us committing her (and ourselves) to a long time. We had her in a tumbling class, a dance class, and a 'sports' class (where each week they play 1-2 new sports). Her dance and tumbling classes ended, so we started another dance class (which was her favorite), and her sports class still has a few sessions left. She loves these classes! And we love seeing her with all her little peers, playing. We also just started her in an art and science class, where they learn different things through art. We had her first class last week, and she LOVES it. Right now she has 3 different classes a week, and can't get enough. Every day she wakes up she eagerly asked if she has a class that day, and is so excited on class day.

We also just started her in ISR swim lessons (today was her first day). Mckenna is fearless and loves water. She is really good at jumping in and "swimming" short distances. But would be totally screwed if she fell into a pool, lacking the ability to actually swim to the surface and get to a place to get out. So we decided now was a good time to get her some survival swim lessons, since we live someone with pools all over. ISR swim lessons are 10 minutes a day for 4-6 weeks. She did insanely well today, and we are excited to see her progress. I have heard that can be a little "scary" for kids, and some kids cry, but Mckenna wasn't phased, loved every second, and can't wait to go back!

Ronnie and I love our classes at the gym. We think classes are a great way to get exercise, learn new sports/skills, make friends, and have fun all at the same time. We are excited that Mckenna is now at an age where she can enjoy classes/lessons of her own. It is such a blessing to watch her learn new things and excel at things!

Thursday, April 17, 2014

Thankful Thursday: Broccoli Slaw & Netflix

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 new class. Yesterday morning I went to the gym before driving to Tucson for work. It wasn’t my usual time, but I figured I’d go and do a class called F.I.T. (which is essentially our Intensity class but in a 30 min version instead of a 45 minute version). Well it was full, so there I was at 5AM with no plan. I decided to do the BodyPump class as an alternative. It was a nice change of pace, and I’m sure my body appreciates it.

I’m thankful for Broccoli Slaw…you know the stuff in the pre made salad section at the store that has shredded broccoli, carrots, and cabbage? I just discovered it. It makes for a delicious alternative to pasta (cook and serve with pasta sauce), or as an alternative to lettuce/spinach/kale for a salad. And an entire bag is only 100 calories (and a whole bag is 2-3 times as much as you’d ever want to eat!)

I’m thankful for a tender-hearted daughter. Mckenna is really compassionate. You can tell by the way she says, “aww,” when she seems a baby/kid crying, or the way she is remorseful when she does something to hurt one of us. To see her sweet heart, remorse, and compassion brings me much joy!

Ronnie's List:

I'm thankful for Netflix. I seem to be taking more advantage of Netflix these days than I have in the past. I used to do my relaxing by reading online or browsing sports sites, but I find myself relaxing now by watching TV series on Netflix. I recently finished the first season of Arrow and have since moved on to the first season of Prison Break. If you have any recommendations, please share!

I'm thankful for Wednesdays. Mandi usually is out of town for work on Wednesdays, so that means it's just Mckenna and I for the day. I love it. We have our special little things that we do and the one-on-one time is something that I really cherish. She's such a blessing.

I'm thankful for grills. We've been grilling a bit lately and its been glorious. Tonight we made grilled shrimp glazed with Thai chili sauce and asparagus. It was absolutely delicious!

Tuesday, April 15, 2014

Questions from a Reader: No Silly Questions!

A couple questions sent my way that may help others out there...


Good night, Ronnie, 
I'm really very impressed by your great work about CF community. It's amazing and very inspiring. I wrote that I'm from Russia and now I live in Portugal. Also I've been in German clinic with my child and read a lot on CF forums in England. I spoke with many doctors and physiotherapists everywhere. But I have to say that your community, your actions, your positivity are great and unique.
I'm a little bit shy to ask some questions on the board as the answers seem to be very easy for most of the community here. But still I have some. And I decided to ask you. I'm sorry.
What is PFT? The level of oxigen in the lungs? That the doctors usually measure with a special clip on the finger?What is FEV?When do your doctors prescribe IV? I've read tons of information about that. But still i'm puzzled as all the cases are very individual and it seems that doctors have different point of view. Is there some "rule" or everything depends on the patient/symptoms?Do the doctors prescribe IV as prophylaxis without bacterias and symptoms?Do your doctors prescribe ANY antibiotics as prophylaxis without bacterias or/and symptoms? 

I understand that the questions are too silly and you might not have had any time to answer. I'm sorry.


First, thank you for your kind words. I'm honored to do anything I'm able to do for the community.

I'll answer your questions to the best of my ability...

PFT explained: http://ihavecfsowhat.blogspot.com/2012/03/awesome-pfts.html

The special clip on the finger measures oxygen saturation explained here: http://www.health.harvard.edu/diagnostic-tests/oxygen-saturation-test.htm

FEV1 is covered in the blog I provided above.

There is no rule when prescribing IVs or oral antibiotics. As you get into adulthood, much of it is a team decision. For me, I request IVs when I can no longer sustain my exercise at level consistent with me being healthy. When I was younger, we would base much of it on how I felt and how my PFTs were.

Yes, there are some doctors who are more proactive and will give antibiotics at the first sign of infections. Some will also prescribe with no sign of infection but other symptoms.

I'm on Azithromycin all of the time, it is an oral antibiotic. I also inhale either Cayston or Gentamicin each month and both are antibiotics.

Hope this helps! Let me know if you have any other questions. 

Monday, April 14, 2014

Mandi Monday: Mckenna's Favorites

Anyone with kids knows that kids' favorite things are forever changing. What Mckenna loves one day she soon forgets over the next days or weeks as new favorites replace old favorites. I thought I'd capture some of Mckenna's favorites are of today:

Food
Mckenna has never been a picky eater. She likes veggies, fruits, you name it. There is no food that she has always refused to eat, but there are phases where she LOVES and craves certain things. Right now she loves hard-boiled eggs, she mainly loves the process of putting salt and pepper on them and then opening the egg white and seeing the yoke inside, but she does like actually eating it too.

Toy
"Spinnies" as she calls them. Her favorite toy right now are these little animals that you stick a stick in and pull it out quickly to make it turn like a top. I can't lie, I kind of love them also.



Movie
Mckenna has never been one to sit for long periods while watching something. She enjoys watching 5-10 minutes of a show or movie, and then she's back up and about like spit on a hot skillet. But lately she has a favorite movie that will hold her attention longer than any other show or movie. Ready for this? Chitty Chitty Bang Bang. Yup, that old movie from the 1960s. She loves it!

Song
Her favorite song right now comes from her favorite movie, Chitty Chitty Bang Bang. The song is "You Two". It's an adorable song the dad in the movie sings to his two kids. The sweetest part about it is every time she sings, "I have you two…" she points to Ronnie and I. The love of this song couldn't come at a better time. In the midst of being a bit sad about our last failed IVF cycle, it warms my heart to sing a song that goes, "Could be, we three get along so famously, 'cause you two have me, and I have You Two too." Something about these lyrics light up my soul and make me feel so blessed to be a part of our trio. I'm not sure if we will always be a trio or if God will bless us with more kids at some point, but if we stay a trio, this song will always remind me what a blessing it is to be a threesome. Here's the song:





Friday, April 11, 2014

Thankful Thursday: Good Friends & Man Church

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 great friends. I have a fabulous friend. She's the same friend that is Mckenna's best buddy's mommy. The same friend I went to CA with with Mckenna and her two girls. I cherish her friendship more than she will ever know. It is such a blessing to have a friend that you enjoy and can truly be yourself with, and share the good, the bad, and the ugly together.

I'm thankful for good health. Ronnie has a cold and Mckenna had a stomach bug last weekend, and little bouts of illness make me really appreciative for all the good health we usually have.

I'm thankful for some dear friends' new little bundle of joy. We have some great friends who waited really patiently for a baby. They had their little boy last week and I could not be more thankful that he is here and perfect. There's nothing more joyous than dear friends holding one of their biggest dreams in their arms!


Ronnie's List:

I'm thankful for the "perfect temperature". I'll be honest, I don't even know what that temperature is because I haven't bothered to look, but I do know that it has been said "perfect temperature" outside for the past couple of days. Not too hot, not too cold, but just right. Just right in the sun, just right in the shade and just right somewhere in between. 

I'm thankful for our church. I'm thankful that we belong to a church that gives us so many different ways to experience God and experience community. Since my softball league is on Tuesday nights and interfered with my bible study at church, I've been attending "Man Church" on Thursday mornings. It's been a blessing to meet some more men at our church and I enjoy the teachings, discussions and fellowship on Thursday mornings.

I'm thankful for swimming pools. Now that it's heated up just a bit, and the fact that Papi and Nana agree to run the pool heater, swimming has been occurring frequently for Mckenna. She has such a blast in the pool and I absolutely love to be with her as she learns new tricks and perfects old ones. Her new favorite seems to be swimming through daddy's legs underwater :)

What about you? What are you thankful for today?

Saturday, April 5, 2014

Running Rehab: An Unscientific Experiment

Guest post by Kay

After being diagnosed with CF at age 21...I had spent the better part of my life telling myself that I was an exception to the rule, that my case of CF was mild and falsely thought there were probably no others with the disease that were doing so well. Sure, I had my moments during exacerbations when I worried and wondered if I’d get to see my daughter grow up...but for the most part I did as I pleased and was hospitalized on average once a year. I’d been a runner since h.s. track and when my daughter was young I had a sign taped to my alarm clock that read “RUN OR DIE” so I’d get up and run before her Dad went to work. But over the years my FEV1 had inched down slowly and I’d left the world of the moderately affected and dipped under the 50% FEV1 level and into the world of the severely affected. Life got harder. It became difficult to jog. I’d get so winded after just a quarter mile jog that I took to doing a jog/ walk type of workout and even that was so hard I began to skip more and more days. My daughter had asked me to run a 5k at a 1/2 marathon she and her dad were doing and when I told her I couldn’t even run a mile she gave me a bit of a hard time saying “anyone can run a mile...you’re just using CF as an excuse”. Ugg. So a week later when my nurse coordinator forwarded a Jerry Cahill video where he was running with oxygen...I was all over it!

I contacted Jerry through Facebook and he told me about using a wrist oximeter and putting the “tank” into a camelback backpack for jogging. I asked my Doctor who always had a witty sense of humor if I used oxygen for exercise if I would become oxygen dependent...his reply “we are all oxygen dependent” haha. But “no, it won’t mean you’ll need to supplement O2 for everyday things”. It took a few weeks and a little experimenting, first with liquid oxygen (not good it can’t take the jarring of the jogging and all the O2 would expel after just a short distance). I exchanged 3 back packs until I got one that had more padding and was comfortable to carry the M6 tank. And then I got in a routine...quickly running 3 and 4 miles at a time. I decided to train for the first annual “Run to Breathe” that Jerry was organizing for BEF in Central Park and invited my daughter to join me. Jerry provided encouragement to the jogging posts I would make on Facebook and we joked about being the last ones on the 10k course. Raceday came and the adrenaline and crowds had me jogging at a pace much faster than home. Central Park is relatively flat in comparison to the Fox River Valley where I trained. I was pleased with the time and my daughter and I had a fabulous 4 day trip to NYC.

Back home from the trip and I wasn’t feeling particularly well. When I went to the clinic I had the worst PFT results of my 49 year old life with Cystic Fibrosis. FEV1 was 36%. It scared me. Badly. I had been getting to know other CFers through social media and a few were on the transplant list. One was at 30% FEV1 so a personal score of 36% was alarming. I did not understand it. I’d been running about 20 miles a week and instead of getting better I was getting worse. I’d lost a lot of weight which had never been a problem as I am pancreas sufficient. But with all that running I could not eat enough. I got a tune up and recovered to 42% where I stayed for a couple years.

Chicago winters can be rough and long. This one has been the worst in my memory with temps dipping down to -18 degrees F at times. I was sick in October, choosing to do a 21 day tune up, and then mid December a bug that was going around at work settled in which took me six weeks to get over with Cipro and Prednesone. January rolled around and I still wasn’t myself and I looked at the option of IVs again and turned around and literally ran in the other direction. I decided to hire a running coach and see if having someone with expertise in building a program could help motivate me. I’d been reading the journey about those pre and post transplant go through with a mandatory “rehab” period both before and after. So Coach GP and I embarked upon a Running Rehab program for these old CF lungs of mine. He said “I’m going to be in your pocket”. By that he meant he would hold me accountable for the workouts and text me and ask me what I’d done each day. Coach is in the NYC area and travels a lot, so I’ve never met him...but working virtually worked very well. We spent a couple weeks seeing what I could do and just getting used to the idea. It was all on the treadmill as cold air is not my friend. My knees hurt, I was tired...but determined. Then he gave me regimented workouts that included interval training and progressive runs. I chose to just “do as I was told”. It made things simpler to just be assigned a workout and do it and not have to make a daily decision on what to do and how far to go. Wimping out was not an option. I let him be the boss of my schedule. The schedule was tough as I work two jobs but I fit it in most days, sometimes getting to the gym at 8pm, sometimes awakening at 5am to fit it in. A month went by and my knees no longer hurt. One day I started running without hooking up to the O2 tank (just forgetfulness) and thought, wow, my O2 sat seems ok...lets see how far I can go without it. I made it a full mile before the O2 sats dropped below 90%. Psyched!!! I hooked up for the rest of the workout and considered that bit of un-supplemented running true progress! Days that followed when I tried it again did not fair so well only making it to 1/4 mile before I needed O2. Every day is different, I learned. Storm and weather shifts affected my lungs, stress at work affected my lungs, but I started to see that pushing myself to run on the worst of those days ALWAYS had me feeling better after the run.

Then, the day came around I’d been training for. The clinic appointment. The day before I’d come home from work to do treatments and had a terrible coughing fit that lasted 30 minutes. It wore me out and my lungs reacted by tightening up. I thought ugg, I’m going to do terrible on my PFTs tomorrow. The next day arrived and I jumped a train and headed down to the city for my appointment. My lungs felt really tight and my expectation was that I may need prednisone to open them up again and if my FEV1 was low...I might even have to do IVs. Ugg. But, my first blow into the tube....showed 52%. Wow. Even though I wasn’t feeling particularly well, my airways were far more functional than before the running rehab. I’m optimistic my score would have been higher if not for those storms rolling in and putting me in a funk.

So, “what have you learned...from the past month Miss K?”, Coach asked. “I have good days and bad days” I said. He said “you respond well to multi tier training on many levels but it has to be very carefully measured between both not overdoing it and undergoing it”. It had become apparent that just running long, slow runs and adding more and more miles as I had done previously was not the right approach. My current program has me running a mix of intervals and progressive runs Tu, Th, Sat.  On MWF & Su I am doing weights and some cross training. I plan on working out 7 days a week, knowing I may miss one as I listen to my body and may need to take a day of rest when muscles and resolve are fatigued. Running more and running longer didn’t seem to pay off the way varied running has and please note: it’s also way less boring :-)

I’d recommend if you’re having trouble kick starting yourself to find a coach to work with. Athlete training programs used for healthy folks can also do great things for those of us with CF. A coach that can understand that there are some limitations but also not be afraid to push may be just the thing to get you started in the right direction. Exercise IS medicine!

Wednesday, April 2, 2014

Workout Wednesday: Today's Workout

We'll start posting our Wednesday workout every week, so please let me know if you have any questions. If it's something you want to try at home, some equipment may be needed, but it can be done at a pretty minimal cost. Also, much of it can be done with body weight.

Here is our workout for today:

STATION 1 (**Each exercise is done for 1 minute**)
Leg Lifts
Hang SquatsSquat Jumps
Leg Lifts
Dead Lift
Burpee

STATION 2
Hover
Kettlebell CurlClean and PressHoverSquat Upright Row
Swings
STATION 3
Plank
Deep Lunge Left
Deep Lunge Right
Plank
Fast Princess Lunge Left
Fast Princess Lunge Right
STATION 4
V-ups
Dips
High/Low Up Downs
V-ups
Kettlebell Tricep Extension
Shoulder Press
STATION 5
Leg raises
Rows
Toe Taps
Leg raises
Pushups
Wallsit Shoulder Press
DONE

Tuesday, April 1, 2014

The Gift We Were Given

Yesterday, we learned that our final two babies that we had recently transferred into Mandi had not implanted and therefore, we are not pregnant. In the last year and a half, we have lost 6 babies through the IVF process and each one was tough to handle. There is definitely something though that feels different when its your last two. It feels much more final. The pain is a bit deeper. The stress is a bit more. The questions are many. The solutions seem far too few.

While Mandi was getting the blood test yesterday, I took Mckenna to her dance class at the local rec center. We had a great time dancing and playing with the other children. It was at the end of that class that I received the one-worded text that made my stomach drop: Negative.

Ugh.

Throughout the process, we knew this could happen. We knew that we could spend hundred of hours, thousands of dollars and more emotional capital then we count and end up with, well, nothing. Nothing but bruises from all of the shots. Heartache. Questions. And a feeling of "where do we go from here?". Even though we were prepared, you never quite know how you'll react when you hear the news. Fortunately for me, I received the text message with a little gift by my side saying, "Daddy, who's that?"

It still hurt, but I was IMMEDIATELY reminded that our one success absolutely dominates our 3 failed cycles in every way imaginable. I would welcome the emotional and physical pain of IVF every day for the rest of my life if it meant that I had Mckenna as my daughter. What we have as a result of IVF and God's provision trumps, in a big way, the loss that we've experienced as a result of IVF.

As I walked Mckenna out of her class, I couldn't help but experience the joy that I experience every day by being able to be her daddy. We have been blessed beyond measure and are thankful every single day for our family. Is it a family that we would love to grow? Yup. Does that growth need to take place through IVF? Not necessarily. Does God already have our story written? He sure does. Am I thankful that He placed Mandi and Mckenna as two central characters in my story? More thankful than I would ever be able to put into words.

And finally, as we were departing the building, I shared the news with a girlfriend of Mandi's who has been very aware of our journey this far. She was eager to hear the results and was also saddened by the news. When I told her the results were negative, her response was about just as perfect as could be...

(While looking down at Mckenna) "Makes you realize even more how much of a miracle this little one is."

Yes it does. Thank you Jesus.

Monday, March 31, 2014

I'm the Child. He is the Father.

Having a child has taught me a lot about God, and my walk with Him. I see through my relationship with Mckenna, a lot of ways God must see me, as His child. He loves me unconditionally and cherishes me more than I can fathom. I love much in much the same way, and always have her very best interest at heart, even when it makes no sense in her young brain. The other day, she really wanted candy. But I didn't want her to have any candy. She had a major meltdown. And I get it. Most days she gets some kind of sweet treat, but there are conditions (she often doesn't know them). I watch to make sure she has eaten enough real food at meals. I change my answer if I know for dinner we are having something like fast food. I see the big picture of her nutrition for the day, and I give her what she can have based on that. In her knowledge of the world, she only sees a fraction of what goes into my decision making. So sometimes she just doesn't understand why she can't always have candy. It's confusing that my answer isn't always the same. But one day, she will get it.

Today we found out that our final IVF cycle, with our remaining two embryos failed. We are not pregnant. This is obviously devastating. I cried, a lot. I felt angry. I feel confused. I honestly want to throw a toddler-sized tantrum. You know the kind where as an adult you kind of chuckle at how ridiculous the kid looks? I really don't understand why or how we went through 6 great embryos over the last year and a half and are still not pregnant. It doesn't all come together in a pretty little picture for me. It's not a neat and tidy clear-cut plan at this point from what I understand and see. I'm Mckenna wanting the "candy". I want the "candy" I got to have our first IVF cycle, and I don't get why I can't have that "candy" again, and I don't get why the answer is different this time.

But here's what I do know. I know that this is one of those circumstances where my relationship with Mckenna is much like God's relationship with me. God knows the bigger picture. He's basing His answer and His plan on much more than I know right now. I'll get it one day. His plan ties together nicely. It's neat and clear-cut from where He sits. I am just not abreast to all that is factoring into His plan. My "candy" tomorrow may not be the same "candy" I got before.

So in my devastation and heartbreak I'll rest in that. As I mentioned in a previous post in the last couple weeks, we have a motto around the Sharpe household: God is always good. God is good when things are awesome. And God is good when things suck majorly. But His goodness does not change with my circumstances. We know He is good and that He has a plan. Please be praying for peace and clarity as we move forward.

I will leave you with this..This song always brings my soul so much comfort. My two favorite parts are these:

Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You've never failed and You won't start now
and

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

….We are in deep waters now, folks. It's scary, but are trusting Him.

Wednesday, March 26, 2014

Workout Wednesday

You peeps seemed to enjoy Mandi posting our workout last Wednesday, so we figured it could be something we do going forward. If it's something you want to try at home, some equipment may be needed, but it can be done at a pretty minimal cost. Also, much of it can be done with body weight.

Here is our workout for today:

WARMUP (*Each exercise is done for 45 seconds*)
Fast squats
Basement squats
Jump squats
Lunge forward right
Lunge forward left

STATION 1 (**Each exercise is done for 1 minute**)
Burpee
Squat front raise
Fast princess lunge right
Fast princess lunge left
Squat jump
Hover

STATION 2
Hang squat
Dead lift
High/Low up down
Princess lunge right
Princess lunge left
Fast squat

STATION 3
Sprawl
Triceps pushup
Swings
Plank to push up
Dips
Run 200 meters

STATION 4
Plank to pushup
Clean and Press
Squat upright row
Spider pushup
Mountain climbers
Hover

STATION 5
Squat press
Shoulder press
Squat jumps
Wall sit left leg only
Wall sit right leg only
Wall sit shoulder press


Active recovery
Hold a plank position for 15 seconds
5 push-ups
Hold a plank position for 15 seconds
4 push-ups
Hold a plank position for 15 seconds
3 push-ups
Hold a plank position for 15 seconds
2 push-ups
Hold a plank position for 15 seconds
1 push-up

Fast squats for 30 seconds
Basement squats for 30 seconds
Squat jumps for 30 seconds
Repeat sequence 4 times

DONE

Tuesday, March 25, 2014

I've Got A Bug In My Ear

No, seriously, like an actual bug in my actual ear. No, not right now, but last week yet it feels as if it was just yesterday. I'll write this in a way that you can hopefully get inside my thought process that night. Here's the story...

It was around 1:10am and I was sleeping like a baby. At 1:11am, a massive thunder storm rolled into our bedroom because all I could hear in my left ear was the rumbling of what seemed to be thunder booming in my ear. But wait, that couldn't be right. If it were thunder, I would hear it in both of my ears. So I went on to the second most logical reason for the thunderstorm playing in my ear - water. I dug around in my ear to see if I could feel any kind of liquid in there. I shook my head like a mad man seeing if I could get the water in my ear to drain. And, out of pure desperation it seems, I actually turned my cellphone light on to see if we had a leak in our roof above me as I could think of no other way that water got inside of my ear. After shaking, checking, prodding and poking - no water.

What could it be then I thought? Oh I know, somehow my eardrum was randomly punctured and now fluid was leaking from my ear. Did I turn on my pillow to fast causing a suction so powerful that it blew my eardrum? Did Mandi yell so loudly during her dream that my delicate eardrum was shattered? And just like that it was gone....

...or so I thought. Just when I thought my eardrum had magically healed itself, I heard the thunder again. Only this time, it definitely sounded more like scratching than thunder.

Oh my. It's a bug.

This is when the pain started. Not only am I now convinced there is a bug in my ear, but I'm pretty sure its trying to chew its way through my ear drum. Maybe this is where the fluid is coming from? Okay Ronnie, enough with the fluid, just worry about the bug now. Ouch, the pain in getting worse. I cupped my hand over my ear and had it act like a plunger trying to unclog a toilet. In between each bite, I thought maybe I could somehow suck this bug out of my ear by some type of reverse vacuum pressure that I was creating. Strike one. I know, I'll get a bobby pin and scrape this little bugger out. I was deep inside my ear. He was angry. I kept scraping. He kept moving. I scraped harder. He stopped moving. Oh, great, now my ear is bleeding. I sure hope this is because I split him in half and not because he finally burrowed his way into my brain. Maybe I should get Mandi. It'd be much better to wake her up, explain to her that a bug is currently eating my brain and that I'm going to E.R. than it would be for her to find me facedown on the bathroom floor due to a bug eating my brain. Before I get Mandi though, I should probably Google this.

Shoot, my ear is still bleeding and this guy is moving all around again. Okay, so I didn't kill him, but I definitely cut myself. At least he's not in my brain though, that's a relief. I stick some q-tips in my ear to soak up and clean off some of the blood before heading to the computer.

Google says that my best bet is to A) Fill my ear with olive oil to kill the bug B) Stick a syringe full of water in my ear and blast it in my ear canal as to hopefully wash the bug out and C) Make sure all of the bug is intact and no part is left in your ear.

Seems easy enough.

I grabbed a syringe, filled it up with water and gave my ear a fireman hose blast (I skipped the olive oil). Nothing. Fill up the syringe again. Push....nothing. Okay, if this doesn't work, I may have to call in a professional. Third time is a charm right? Blast.

And that's when it happened. First, he hit my shoulder and then down into the sink he fell. And there he was, looking as relieved as I was to be rid of each other....

An earwig.

Of course.

Monday, March 24, 2014

Faith Like a Child

I don't really have much to share today other than a little observation from the weekend. We've all heard the phrase, "faith like a child"…and it's so humbling (and inspirational) to watch.

Yesterday, Mckenna swam for the first time this season (it was finally warm enough to actually get all the way in my parents' pool). It was amazing. She was nervous, at first, to jump in off the side, something she loved to do last summer. But after a little time, and Ronnie and Papi (my dad) telling her it was ok, she jumped. And then there was no stopping her. She wanted to have tea parties underwater, touch her feet to the bottom, swim to the edge and pull herself up, swim across the pool underwater holding onto daddy and Papi. It was amazing. And the thing I kept thinking was, "she's trying all these things simply because she trusts her daddy." Common sense (and human instinct) tells us not to hold our breath under water for long periods of time, but daddy said it was safe, so she did it…over and over again.

It was a humbling reminder of all the fun and exciting things I could be doing if I just jumped in and trusted my (heavenly) father. What am I missing out on being too scared to make the first jump? How's that for a short and deep blog for a Monday?!

I'll leave you with this:

Thursday, March 20, 2014

Thankful Thursday: God's Provision & "Our Thing"

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 6 minutes of squats. I love a hard workout…once it's over. Yesterday our class had a "half time break" that was 6 minutes of squats. 6 MINUTES! 30 seconds of fast squats alternated with 30 seconds of bottom half squats….for 6 minutes straight. It was brutal, but it was awesome. You could feel yourself getting stronger by the amount of burn that was happening in your legs. I'm thankful I have somewhere I can workout and push myself.

I'm thankful for hard boiled eggs. They taste delicious and are healthy…but above all, I just love the way Mckenna says, "hard boiled eggs". She has about 14 extra syllables in the words and it makes me smile every time we asks for them. 

I'm thankful for God's provision and goodness. I am constantly surprised by what God provides for our family. I'm not sure why, as eventually you'd think I'd realize He will always show up in a way that is best for us, yet, I am constantly in awe. Sure we don't get everything we want, but we get all that we need and all that is right for us. Even through disappointments, God provides in ways bigger and better than my original plan. We have a little mantra in this house, "God is always good," that I try to drill into Mckenna's head. When asked, "even when things aren't perfect, what do we always know?" Mckenna will respond, "God is always good." As of now, she's just being a parrot, echoing what she's been told, but if she can one day understand and truly believe in God's goodness, even in tough times or sad circumstances, life will look a lot different for her. Life will always feel more joyful and filled with so much more peace. What a joy it is to serve a God who is always good, always shows up, and always has a plan.


Ronnie's List:

I'm thankful for "our thing". On most Wednesdays, Mandi heads down to Tucson for a staff meeting which means it's just Mckenna and I from about 6am to 4pm or so. The ten straight hours is the most time we spend one-on-one with each other with no breaks, and I love it! Most Wednesdays we have the same routine which has become "our thing" - Breakfast, Treatment, Hang out (park, movie, bubbles, etc), Gym, Lunch, Nap, Mall, Costco, Home. She always gets special little candies at the mall, tours the puppy store and gets to play with 67 other children. We also get fun snacks at Costco and try to spot new items in the store. Wednesday is definitely one of my favorite days...along with the other 6.

I'm thankful for hard-boiled eggs. For the last week or so, we've all been really into hard-boiled eggs. We have eggs every morning, but usually would just do egg whites or a fried over easy/medium/hard. Mckenna seems to really dig them hard-boiled, and they've always been a favorite of mine, so I'm thinking we'll stick with them for a while.

I'm thankful for March Madness. There is nothing like the NCAA basketball tournament, and I can't wait to have it playing 24 hours a day. We all fill out a bracket - for nothing but bragging rights - and get sucked into many games throughout the day. By we, I of course am just talking about me...although Mandi did win the bracket competition last year.

What about you? What are you thankful for today?

Wednesday, March 19, 2014

Workout Wednesday: Today's Workout

We talk all the time on the blog about how much we love our Intensity class at the gym. It's 45 minutes worth of butt kicking. I thought today's workout was a good one, and one that can be done at home if you have some kettlebells, or you could do the exercises with just your body weight, dumbbells or resistance tubing.

Warm Up
15 burpees
50m sprint
50m frog jumps
200m run

Stations - The starred exercise is done between each exercise. Each main exercise is done for 1 min. Each starred exercise is done for 30 seconds. So it looks like main exercise for 1 minute, starred exercise for 30 seconds, main exercise 1 minute, starred exercise 30 seconds, etc...

Station 1
**Straddle jumps
Kettlebell Hang squats
Kettlebell Deadlifts
Kettlebell pushups
Kettlebell Sumo squats

Station 2 
**Burpees
Kettlebell Swings
Kettlebell Clean and press
Kettlebell Squat upright row
Kettlebell Squat press

"Half time" 
6 min of squats (no breaks between sets) - alternating:
30 sec fast squats
30 sec bottom half squats

Station 3
**Kettlebell Jack press
Jump squats
Alternating lunge back Kettlebell press
Fast squats
Squat step outs - step out with left leg and squat, step in with left leg and squat, step out with right leg and squat, step in with right leg and squat. Repeat.

Station 4
**Kettlebell Shoulder press
Jack pushups
Plank to push ups
Push up alternating leg raise (body in push up position, lift one leg, then the other. Repeat)
Bicycle crunches

Tuesday, March 18, 2014

Julie Montes - You Will Be Missed, Friend.

I don't do many memory posts (I believe this is my third one ever) on this blog, but after the recent
death of a cyster that I spent plenty of time with roaming the halls of University Medical Center, I felt compelled to. And it's funny, I don't feel compelled to because I think it will make any difference in her now awesome life, I'm not so sure she'll read it, but I'm doing it for me. Maybe that's why we all do it though? I don't know. I wasn't planning on writing about her or her death until about 3 minutes ago when this overwhelming feeling came over me that I needed to say something. I needed to write down what I remembered of her and needed to put to paper the different things about her that are currently making me smile.

Julie Montes was one of the softest, most gentle-hearted and loving people that I'm come to know within the walls of the hospital I've been going to my whole life. We saw each other very infrequently outside of those walls, but within them, we always connected. Conversation never waned, and although I hated seeing her under those circumstances, I was always eager to stop by her room for a chat when I saw her name on the "big board".

The first thing I noticed about Julie every time that I saw her was her eyes (I'm sure I'm not alone in this). It wasn't because of the physical presence or look of her eyes though, but because her eyes always told her story. You could see how she was feeling, or what emotion she was either exuding or holding back just by looking at her eyes. And when I picture her eyes now, I see a smile. Even though it was rare that I saw her smile, sense it was usually covered by a mask, I saw her smile through her eyes. She smiled a lot. She giggled often. Being in her presence always made me feel happy. That's just who she was.

I don't mourn her death though. My heart certainly breaks for her husband, friends and family she left behind, but I know that we are all currently celebrating the life she lived and more importantly, the life she lives now. Like me, Julie was a servant of Jesus Christ. We had many wonderful conversations about our mutual faith and both trusted the Lord fully with what He wanted to do with our lives. Although Julie was called Home much earlier than any of us wanted, her Father wanted her back. She was ready to go.

So Julie, tell Dad I said hello, and if you could, put in a word for me that I'm not quite ready yet. Thanks. You will be missed....but I will see you again, friend.

Monday, March 17, 2014

Mandi Monday: "Which One?"

Mckenna is still a talker. She talks ALL. THE. TIME. She comes by it honestly (whoops) as I talk a ton, my mom talks a ton, and my Grammy talks a ton. It's a blessing and a curse as a toddler (probably is also as an adult. Ha!) I love that she says all that she's feeling, so I know. I love getting into her brain. I don't so much love that she asks the same question 392938 times just to fill air time.  My favorite part about her talking these days, however, are the adorable things that come out of her mouth. Here are some recent highlights:

"I miss you" - Usually I can figure out the root of what she's saying, or what she thinks it means and therefore why she's using it how she's using it…but in the case of this phrase, I'm not so sure. She says it all the time. Sometimes she says it when we've been apart. But usually she says it when we've been together. She just randomly will say, "mommy, I miss you." I'm not sure if she thinks "I miss you" and "I love you" are interchangeable. Maybe she thinks "miss you" actually means the opposite of what it does. Regardless, I love hearing those three little words come out of her mouth.

"Thank" - This is Mckenna's version of "thanks". I've tried to emphasize the "s" to show her it's "thanks"but she doesn't so much care, and really, I don't care either. To hear a sweet little "thank" out of her mouth is cute.

"What time is it?" - She asks this when wondering when something is. "Today we have dance class." "What time is it dance class?" The funny thing is she wants to know an actual time…like "9 o'clock". She even repeats it back like she is confirming it. It cracks me up since she has no idea what time that actually is, how long 2 hours feels, etc. But it's just so cute as I try to explain all those things to her in question after question series of questions that follows the "what time is it?"

"Just a little teeny tiny…" - This is her bargaining method. When asking if she can use something, have something, etc she knows may not fly, she throws in that she wants "just a little teeny tiny" at the end of the request. She usually says it in an angelic voice while making the "small/little" sign with her fingers (you know holding your thumb and pointer finger close together), and adds this little cute shoulder raise she does when she's asking a question.

"Just like you" - Mckenna likes to do things like we do. She likes to use the cups we use, or eat the food we are eating, or partake in an activity that we are doing. This simple little phrase makes my heart so happy. I love nothing more than when she asks for something so she can be just like me. "I want wear my jeans, just like you…" It melts my heart. I remind myself, however, that she wants to be just like me…so I need to axe all the behaviors I don't want her emulating. "I want soda just like you"….umm no. "I want candy just like you"….errr not at 9AM.

"Which one?" - I have a love-hate relationship with this question. She asks it all the time. Most the time, it's not used correctly and I actually have NO idea what she's trying to ask, so I repeat back what I think she's meaning to say as the question, and then answer the question I made up. A conversation could go like this:
               Me: Oh look, a school bus!
               Mckenna: Which one?
               Me: What do you mean which one? The one right there.
               Mckenna: Which one?
               Me: Do you mean "where is it?"….It's over there (said while pointing)

But sometimes it can look like this:
               Me: Oh look, a school bus!
               Mckenna: Which one?
               Me: What do you mean which one? The one right there.
               Mckenna: Which one?
               Me: Do you mean "where is it?"….It's over there (said while pointing)
               Mckenna: Which one?
               Me: I don't know what you're asking. There's only one bus, so it's that bus. The bus right    there. The only bus you can see. Do you have another way of saying what you want to know?

It's semi-cute when she says it. But it also usually leads a really long guessing game that I only have patience for 60% of the time :)

I love hearing what's happening in that little brain in fragmented and limited words. I love when she misuses or mispronounces words. I love her little Minnie Mouse voice. I think these are some of the things I will miss most when she grows up.