Thursday, May 22, 2014

Thankful Thursday: Wedded Bliss & Fans

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 4 years of wedded bliss :) Today Ronnie and I celebrate 4 years together as husband and wife and I’m so thankful for every day, month and year together. I couldn’t ask for a better partner in this life.

I’m thankful for having Ronnie home. Ronnie got home Monday night from his 2.5 week stay, and it has been amazing having him home!! Life is so much better with him under the same roof.

I’m thankful for a wonderful babysitter. Mckenna has had a babysitter come hang out with her on Thursday afternoons for the last couple months so that Ronnie and I can get some work done together. The last couple of weeks Mckenna has been especially clingy (I think Ronnie being gone may have driven this), and has been out of character when the sitter comes (full of tears, fits, sadness and fear)…Mckenna has insisted on starting the time in bed, reading by herself or “sleeping”. Our sweet sitter just waits her out and loves her anyways. Within 30 minutes, Mckenna is usually ready to play. I am so thankful for a sitter who understands a child’s heart, loves unconditionally, and is a lot of fun.



Ronnie's List:

I'm thankful for 4 years of marriage! I can't believe I was able to trick another human being to spend 4 years with me (6 including our dating years). God has truly blessed me with an incredible partner in crime that I absolutely love doing life with. Here's to another 40...that is crazy...and sounds very tiring...but with Mandi, I am willing ;)

I'm thankful for vanilla soy milk. I don't think I've ever tried the stuff before last week, and now I can't get enough of it! Now, I don't drink it by itself, but in iced coffee, although I don't mind the taste of it as a standalone. I also have to give a shout-out to my wifey for pumping out the iced coffees for me!! 

I'm thankful for fans. This time of year it starts to get incredibly hot back in my office (it was an addition to the house and doesn't have the best airflow). I picked up a standing fan at Costco that also came with a little desk fan. Now I have air blasting my face, body and top of my head (from the room fan above) to try and combat the heat exhaustion that I feel while I'm working ;)

What are you thankful for today?

Tuesday, May 20, 2014

Top Ten Tuesday: My Favorite Things About Hospital Stays Ending

Ronnie is home...WAHOO!! He got home last night. I'll let him give the specifics in his next post, but I figured it would be a good time to do a top 10 list of what I love about him coming home (some will be very obvious!)

1. FAMILY TIME - I love being back together as a family. It is so amazing to have us all under the same roof again. Both practically, for the extra help, but also for the emotional aspect of just having daddy and hubby home.

2. Starting Anew - Ronnie and I use hospital stays to reboot our lives...this may be one of my favorite things about the end of a hospital stay. We usually revamp our diet, our exercise routines, our chores, you name it. This time out Ronnie and I have decided to clean up our eating (as in, eat clean for awhile), rework some of our workout routine, reschedule some of our daily routine, and reorganize our chore list. It's a nice opportunity to hit restart!

3. Increased Energy - Ronnie usually has a lot more energy when he gets out (vs when he goes in). I love having him back at 100%. He doesn't complain before a stay, and he tries not to have it affect our lives, but I can always tell he's forcing it before he goes in.

4. Appreciating the Under-appreciated - I always love and adore Ronnie, but I appreciate him SO much more the first few days he's home from the hospital. His presence I felt more than usual. Hearing his goofiness resound from the playroom or finding laundry folded waiting for me make me truly appreciate him.

5. Daddy's Girl Back with Daddy- Mckenna struggled this stay more than usual with Ronnie being gone. I love seeing daddy's little girl back with her daddy. She smiles a little bigger, laughs a little louder, and snuggles a little tighter when she's with her daddy.

6. Evening Company - I don't very often think about evenings when Ronnie is around. We veg out. We watch TV. We sleep. It's all low key. But when he is gone for 3 weeks, evenings start to feel lonely. It's quiet. I'm alone. The house feels emptier. Having him home is truly felt in the evening. Even watching TV with someone else feels remarkably more full, even if no one is talking.

7. Help - It's exhausting to be a single mom for weeks on end. Help is amazing. Getting to pee alone sometimes during the day. Someone else to be on potty duty. Someone else to grab something out of the fridge. Someone else to answer all of the "why" questions. Everything. Help is amazing!!!

8. Gym Buddy - I love working out because I love all of the benefits...but one thing I love the most is doing it with my gym buddy. It's our time together. We can talk, joke, check each other out in the mirrors...It is a really fun time together.

9. A Warm Body - Our bed feels empty when Ronnie is gone. I stack pillows on his side of the bed, just so it feels less empty, but it's really nice to have a real person back in bed. I would say it's nice to have snuggles during the night, but usually he says I'm too hot to snuggle with, so he snuggles pillows ;-)

10. FAMILY TIME - This one is too good not to do twice! It's nice to have our threesome together again!

Friday, May 16, 2014

Thankful Friday: Family

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 friends that are like family. Mckenna and I flew to SC to visit some family friends, the Giblins. My parents have been here a week and Ronnie, Mckenna and I were set to meet them for a long weekend. Ronnie ended up in the hole, so he didn’t join us, but Mckenna and I came anyways. It is such a blessing to have family friends that really are like part of the family. They are like another set of parents to Ronnie and I and we couldn’t be more thankful for their friendship.

I’m thankful for a change of scenery. Mckenna had a rough few days at the beginning of the week. I think she may feel Ronnie being gone and just how long he’s been gone this stay (I’ll write another whole blog about that). Anyways, she was a PILL! Thankfully, I think heading to SC was exactly what she needed to get out of her funk. A change of pace has been good for both of us.

I’m thankful for friends who are always there. As I mentioned, Mckenna was having a rough few days. She was clingy, nervous about me leaving her sight, but a pill when with me. On Tuesday, I had committed to take my brother to his follow up appointment for his leg, but Mckenna had to go to swimming, so her sitter (who she usually LOVES) came to watch her. Well it was not pretty. Mckenna sobbed and insisted on just “sleeping” in her bed alone until I got home. I called my friend, and someone who feels like a second mommy to Mckenna and let her know she may get a call from the sitter. Next thing I knew, I got a text that they were all meeting for gelato, followed by a picture of a perfectly happy Mckenna eating with her bestie. My friend proceeded to take Mckenna home, feed her a yummy dinner, and love on her (and played) until I got there. I am so thankful to have a friend who is always going out of her way to make my life easier, and loved so much by Mckenna.



Ronnie's List:

I'm thankful for a great response in my first week in the Hole. I can't remember the last time my lungs responded so positively after just my first week in the Hole. My FEV1 actually went up 18% and more importantly, I can take a much deeper breath with little to no pain.

I'm thankful for family help. When I'm in the Hole, there are many family members who take on extra responsibilities or tasks to make my life easier. Mandi of course steps up BIG TIME and becomes a single mama while I'm gone which is quite the feat. My mom makes dinner for me almost every night. My brother Grant brings me food and hangs out almost every day. My brother Andrew is housesitting and dog-sitting while Mandi and Mckenna are out of town. CF can definitely be a team sport!!

I'm thankful that I can do almost all of my work from a computer. It takes a lot of pressure off of me getting out of the Hole quickly when I can still take care of my work tasks from my hospital room. Conference calls via the web are easy and email of course works from practically anywhere. I'm also thankful for those I work with be more flexible with me while I'm in here!

What are you thankful for today?

Wednesday, May 14, 2014

The Choices We Make

When I made the decision to come to the hospital, it was not an easy one. The way I was feeling, my energy level, my increased cough, my increased mucus production, my lung pain and my lung function test results all pointed to an easy decision, but it was certainly not so.

Mandi and I had been planning on a trip to South Carolina with my father-in-law and mother-in-law and family friends for months. The tickets had been purchased the schedules rearranged and we were ready to go. That "we" is now just Mandi and Mckenna. They left on a plane for South Carolina this morning.

It's funny as it seems every time there is a decision whether or not to come into the hospital, there is always a balancing act. I have to decide how to weigh the perceived sacrifices with the hopeful
outcomes. And really, the hopeful outcome is the only reason I come into the hospital. If I didn't have that hope that I could and would get better there be no reason for me to be in here. Thankfully I still have that hope, and have never lost it. When I come in for a tune-up, I do get better. I do become the best version of myself. It make take 2 weeks, 3 weeks or more, but it does happen.

So what led to this decision? The easy answer is that my lungs felt beat up. I was unable to exercise like I'm used to. I found myself getting winded after a flight of stairs. It was hard to take a deep breath because of the pain that I experienced each time. With me, it becomes a vicious cycle. Less than effective workouts contribute to more mucus buildup which contributes to more inflammation which contributes to a harder time breathing. It's up to me to break that cycle. Sometimes I can do it through increased treatments or increased exercise, but other times it takes the decision to come in for a tuneup.

When I went to clinic and talked it over with the team they thought it was a pretty good idea that I come in. They knew about my looming trip to South Carolina and told me that I would have their full support if I decided to try to hang on and make the trip. We all knew that the decision to come into the hospital would mean that I was choosing not to go to South Carolina but to go into the Hole. It was not an easy decision, but there is no doubt that there was a right one. I had to put my health first.

I don't have many regrets in life, but as it relates to CF, I have one big one. There was a time in my life when health certainly did not come first. My social life came first. My work came first. My girlfriend was my priority. My friends won out over my treatments. Delaying hospital stays to go on vacation was the norm.

And after years and years of making those decisions and putting everything else in front of my health, I am now paying for it.

I have to work so hard now to stay healthy. I have to put in so much time each day to keep my energy at a level that my wife my daughter deserve. So much time is spent doing my treatments or at the gym that I wish it could be spent at the park with my daughter. I now have to miss family vacations to come into the hospital.

If I would've kept my health first, as the first priority in my life, would I have to make the sacrifices now? Of course I do not know the answer for sure, but I'd be willing to bet that I wouldn't have to work so hard now. I wouldn't have to take so much time away from my family when life is really important. I probably wouldn't be missing this trip to South Carolina.

That's the bed I made and now I lay down in it.


So what's the point? If you're reading this and you're struggling with putting your health first, I beg of you, don't make the same mistakes that I did. There will come a time in your life that you will wish you didn't have to work so hard because of choices in the past. When we were younger many of us thought that we were just “living life”. Let me tell you as a man with a wife and a daughter - This is life. I'm now in a life that matters. I have two beautiful girls who count on me to be at my best. That doesn't mean that if you don't have a family in the future you won't be living “the life”. But I promise you that there is something down the road worth sacrificing for. The truth of the matter is you're going to have to work hard now or work hard later, but hard work and sacrifice will happen.

I encourage you to make that sacrifice now, and to work hard now, at the chance that you won't have to work so hard later.

Monday, May 12, 2014

Mandi Monday: Mother's Day Recap

Ronnie is still in the hospital, so Mckenna and I flew solo for Mother's Day...what better way to celebrate being a mom, than, well, spending the day with the little lady that made me a mommy. Here's our day in pictures:

We started the day with breakfast and coffee outside...I ate while Mckenna played with chalk.


Mckenna played and goofed around while I got ready for church.

We went to Fatburger...Mckenna loves hot dogs, and I like not waiting for 35 minutes with everyone else and their moms!

After nap, Mckenna and I went to a peach festival at a local farm to pick peaches. We got water ice there...nothing says peach picking like watermelon water ice...I guess?!

We have a lot of interesting-looking peaches because I just let Mckenna decide what was good...which usually was whatever she could reach.

9lbs of peaches is heavy. Most the peaches at the bottom of the bag are bruised because, well, a toddler drops a 9 lb bag of peaches...every step.

Mommy-Mckenna selfie. Note who's carrying (and eating) the water ice...I really only got it for her for myself. I know I'm not the only mom that does that!

Hayrides too and from where you pick peaches! It was awesome, except all the dust and hay that scratched our corneas the whole time we rode.

"Will you help me? I only two and a half. I can't reach this." Truth.

Some passerby took pity on me as we took a selfie. Thank you, stranger, for your photo-taking.

We ate a lot of peaches.

We also ate a lot of cinnamon roasted cashews...hmm we ate a lot.

We took lots of pictures for Daddy. I love my little ham.

And I finally got a "smile". I'll spare you the other 34839248023 outtakes.

Oh and then Mckenna became a grumpy bus driver. She actually had fun, until she got into the role of a bus driver.

Sunday, May 11, 2014

Happy Mother's Day!

Happy Mother's Day to all the moms out there! I am SO thankful that this passionate, affectionate, smart, fun-loving, outrageous, loving little spark plug made me a mommy!!











Wednesday, May 7, 2014

My Torn Pleural Adhesion

Mandi mentioned some of the things that may have contributed to my current hospital stay on a blog a few blogs ago, so I figured I would talk about one of them.

It was the night of April 3rd and somewhere around 3 AM I felt a slight tug and some pain in my left lung. Now, I have had similar feelings before so I wasn't too worried and I took some deep breaths thinking it would pass. The pain did not pass but it didn't really get worse so I figured I would just sleep it off and address it in the morning. About 3 hours later the pain had intensified to a pain I had not felt up until that point in my life (in my lungs).

When I rolled out of bed I had to walk with a hunch as it was the kind of pain that almost brought me to my knees. I made it to our couch in the living room and I just sat there rubbing the area trying to take deep breaths thinking again that hopefully it was something I could breathe through. The pain only got worse. I was unable to take very deep breaths and when I did the air seemed to get forced out of my lungs. I was unable to speak properly and I would make more jumbled moans than actual words. It was the first time this kind of pain with these kind of symptoms had ever occurred.

Mandi took one look at me sitting on the couch writhing in pain and said "we're going to the ER”. Usually I would fight her on something like this, thinking that I could fight it on my own or that it would pass shortly–I put up no such fight. She grabbed me some clothes got Mckenna together and out the door we went.

We made our way to the biggest hospital within striking distance and Mandi dropped me off in front of the ER entrance. There was no receptionist present as I clung on to a sign which was assisting me in keeping me up right. A security guard noticed this and rushed to get me a wheelchair to sit in. He then went back into a different room to grab some assistance. Just then Mandi and Mckenna came through the doors, which was good timing, because I was having trouble having enough air to answer the nurses questions (I was later told they figured I had a massive kidney stone). I of course told them about cystic fibrosis and that I've had similar pain before but not to this level. I shared with them that if I had to guess what a pneumothorax or a popped lung felt like, this would be it.

They brought me back to a bed and immediately administered an albuterol treatment and oxygen. They then took me back to x-ray and I also had a CAT scan performed. This was my first time at this hospital so they had no record of me or any x-ray images or CAT scan results from past. They reached out to one of my pulmonologists in Tucson to compare notes and results of the different tests. Fortunately, as time started to pass the pain started to subside.

They concluded that I must of torn a pleural adhesion. Which in layman's terms, which of course I asked for, in my case means that they felt I ripped some scar tissue in my lung. I had never even thought of this being a possibility. I mean it intuitively makes sense, and I understand that you can of course rip scar tissue, I just never thought of it actually happening. I know that I have scar tissue all over both lungs and I'm surprised I guess that it took this long to happen. Being as active as I am and using as my lungs as much as I do I feel blessed that I've avoided it up until this point. I'm also very thankful that it did last, that is the pain, “only” 5 hours or so. I mean I had some residual pain for the days that followed but nowhere near the initial pain that I felt.

It was suggested that I should do some exercises that would stretch the cavity wall and that I didn't do anything too aggressive for at least a week or so. They also suggested that I get these “lung stretches” into my daily or weekly routine to try and avoid another torn pleural adhesion in the future. I did have a cold the week before this happened and am wondering if that contributed to this event as well.

I also think this contributed to my downward trend over the course of the following month. A downward trend which ultimately led to me being where I am today, the Hole. It wasn't the whole story however--there were other factors that led to me being in here which I will get into in later blogs.

Has anybody else out there ever been told they tore a pleural adhesion? I'd like to hear your story!

Tuesday, May 6, 2014

Top Ten Tuesday: Favorite Things During a Tune-Up

As you maybe read, Ronnie is in for a tune-up. He got a bed on Saturday afternoon, so we are in full swing. I will let him write a post about what sent him into the hole, but my guess is it will be a few days...he's still at the point in his stay where is feels worse before he feels better.

I figured it would a good chance to read some of my favorite things to do with Mckenna while he is getting tuned-up. The name of the game is to pass time and have fun! They are in no particular order!

1. Take walks - Mckenna and I do this when Ronnie isn't in the hospital too, but we have more time on our hands while he's in, so we do more of it. Sometimes she rides in the stroller, while other times she walks also. We like to go "hunting for busses" in the mornings.

2. Go go the park - Daddy is usually the park-player. Mckenna and Daddy go to the park while I make dinner many evenings. But while he's in, the two of us go and she "teaches" me to do all the fun things she's learned with her daddy.

3. Adventures - I use the extra time to take Mckenna to places we haven't been in our area. It's fun to explore your own town.

4. Playdates - Mckenna and I have lots of playdates usually, but we have that many more when Ronnie is gone. It's nice to spend time with friends...for both of us.

5. Gym time - One of Mckenna's favorite things to do is play at the gym. One of my favorite things to do is to get a workout in and have a little "me" time. During a hospital stay, we both love it that much more!!

6. Eat together - We eat most meals as a family, but usually Mckenna is in her high chair. But when Ronnie's gone, Mckenna and I sit side by side at the kitchen island to eat meals, and it's fun to have meal dates together!

7. Bubble baths - Mckenna loves bubble baths. When Ronnie is gone, Mckenna and I kill some time by taking bubble baths together. We fill the tub with suds, put a show on the iPad, and play with toys until we are both prunes!

8. Snuggles in bed - Some mornings it's hard to spring right out of bed, so Mckenna and I snuggle in my bed for 30 minutes to an hour snacking on cereal, watching shows and playing games.

9. Time with family - We spend a lot of time with my parents and Ronnie's mom while he's in. It's a fun opportunity for all of us to see more of each other.

10. VISITING DADDY - This is the best of them all. Mckenna and I LOVE visiting Ronnie at the hospital. Time with a toddler in a hospital room passes slowly, but we all have fun spending time together in a new setting. Mckenna loves seeing daddy, but she also loves visiting the children's library at the hospital, as well as playing with the fun toys and "attractions" they have around the hospital.

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