My Little Hospital Helper

Thankful Thursday: DADA & Home

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 to have my hubby home after a 2-week hospital stay. It isn't fun to be apart, so I am thankful to have my hubby back!! He makes me life more fun, and honestly, easier! Ha! 

I'm thankful Mckenna has her daddy back. This is the first stay that you could tell Mckenna knew her daddy was gone and was noticeably excited to have him back. He got home after she went down for the night, and when she got up Tuesday morning, she was THRILLED to see him. She gave him a long, tight hug and while hugging him looked at me with total excitement on her face and exclaimed, "DADA"...as if to say, "mom, are you seeing this?! It's DADA!!!"

I'm thankful for other people's creativity. I stumbled upon a blog the other day that has GREAT ideas for kids. One of which are "busy boxes"...where you put activities in boxes and rotate through them, and let the kid pick which box to play with at certain times. Many work on fine motor skills in fun ways. I assembled 5 boxes for Mckenna this morning and holy cow, she LOVES them!!

Ronnie's List:

I'm thankful for a quick two week hospital stay. It's never easy being away from my family, but we're more than willing to make such a sacrifice as we believe the hospital benefits me greatly. It was also much easier on Mandi as her parents are back in town and willing (and eager) to hang out with Mckenna as needed.

I'm thankful that it wasn't any worse. "It" being the virus that assisted my trip to the hospital. I was getting close to my bi-annual stay in the Hole, but I thought I'd be able to push it off a bit. After catching the virus on December 23rd, and not getting better after 2 weeks, I decided I needed some back-ups. I'm just thankful that it was a virus and not something worse that worked its way through my system.

I'm thankful for the opportunity to own a home. We started hosting the Bible study at our house every Thursday and that wouldn't be possible if we didn't have a place to live. It's also nice to have the space to accommodate  8 adults, 7 kids and a babysitter. Not sure why we're so blessed!

So, what are you thankful for today?

I'm a Wimp

First things first, I feel I should say this is Mandi posting, since it's not Monday! Although, in the context of this post, Ronnie is a wimp too...

Let me explain...

On Sunday my mom and I did the Phoenix Rock n Roll Half Marathon. We decided about a month ago to run/walk it. Neither of us had been training for it, but we both are in reasonable shape and keep up a decent amount of running. Up until the race we both were just doing 2.5-3.5 mile runs a couple days a week. I should mention, I was doing an interval training class and we were both lifting at the gym, so we weren't just sitting around, but never-the-less, we weren't running much. I did do one 7.5 mile run a couple weeks before the race, just to see how it felt. The 7-miler felt ok, but to say I was ready for it to be over about 5 miles in would be an understatement.

Based on our training, or lack there of, we decided we were just going to run/walk it for fun. No pressure. We figured worse case we'd run half and walk half. Our plan of attack started at run 2, walk 1. So we'd run 2, walk 1, run 2, walk 1, repeat. Then the day before the race we decided we'd shoot for run 3, walk 1.

On race day, we felt a bit nervous. We both didn't care about our time or pace, but I think neither of us wanted to be the one to hold the other one back. Standing in our corral, we got our game faces on (aka, joked around by how out of shape we were and that we were crazy for doing this). Here we are!

The view from our corral

The gun went off and we were on our way...well almost. It was a wave start, so each corral was started separately. We had to wait 30 minutes to start...that was a LONG 30 minutes. We started out strong. We both felt good, with the exception of a couple aches in our joints from the cold air, but those went away once we warmed up a bit.

Mile 2 came and went, and we kept running.

Mile 3 came and went, and we kept running.

Mile 4 came, we ran another .5 and decided to walk a bit.

As we walked we realized we still felt our legs. We weren't out of breath while running, our legs were just tired and sore. But they continued to be tired and sore while we walked. We were being passed by people. We are both too proud to be passed (yup, I said it). So between being too competitive and still feeling our legs while walking, we didn't walk the full mile we intended, we walked around .5 miles or a little less. So we started running.

Another 4 miles came and went...and we decided to walk a bit. Again, we still felt our legs, so we started back up in a little less than .5 miles. Here's us, mid-run...clearly I had a bit of trouble getting a good shot.

We ran. We felt tired, but we ran. We joked that the key was just to be more proud than you are out of shape.

At around mile 11.5 we decided to walk another .5 just to "rest up" before the final push. Again we walked just under .5 and started back up.

It was the last 1.1 miles. We both were tired. Here is my rockstar momma pushing through (she didn't know I took this...sneaky sneaky).

It didn't feel like a walk in the park...but 1.1 miles later, we had crossed the finish line. We did it in 2:09:22 - at a 9:53 mile pace. Here we are within a couple minutes of finishing.

I learned a valuable lesson through this half marathon experience. I'm a WIMP. Yup. I am. I had only been running 3 miles. I ran one 7.5-miler, and decided that was enough. I was tired. But then, without legit training, I ran 13.1. You know what that means? That means I didn't push myself nearly enough leading up to race day. I had the ability to run FAR FARTHER than I had been. I had the ability to run 13.1, but I was stopping after 3 or 7.5 miles. I had been wimping out...FOR MONTHS.

I can't help but wonder what I am capable of if I push my body on a daily basis like I did on Sunday. How much faster would I be? How much farther would I run? How much more fit could I be? Because I put in a lot of hours at the gym and working out, I had never stopped and asked myself am I being my best? Am I achieving my full potential? On Sunday I realized I'm not! If I had to guess, most of us aren't pushing ourselves as much as we could. Most of us sell ourselves and our potential short. I think in one regard or another, lots of us are wimps. I thought I was pushing myself, until I pushed myself even further. I've decided not to wimp out anymore. I'm going to push myself beyond what I thought was pushing myself before. My motto always has been (thanks to an old soccer coach), "our body is unlike any other machine, it adapts to the stresses we put on it"...this weekend I realized I'm not putting enough "stress" on it!! Look out body, you're about to be PUSHED like never before!!

Tune-up Report

Nothing quite compares to pulling into the drive way and getting that first embrace from my wife after a two week stay in the Hole.

I wanted to thank all of you who have sent notes along or been praying for me during my latest tune-up. As you know, I came down with a virus of sorts before the Christmas holiday and I was never able to shake it completely. Rather than continue my slow decline, I decided it was best to call in the back-ups (the back-ups of course being my doctors). They agreed that a stay in the Hole was probably best before I got any worse.

I checked in on January 7th with an FEV1 of 65%. I was actually quite surprised and pleased with that number. You guys know how it is though. There are times that we feel worse than "the number" and times that we feel better. This was one of those times that I felt worse than my number usually indicates. I'd definitely have to chalk that up to the head/sinus/chest crud that was going on.

The first thing they did when I checked in was to test me for the flu and RSV. As you know, there is quite the epidemic going on throughout the country right now, but fortunately, both came back negative. That was good and bad. It was great that I didn't have one of those nasty bugs, but that also meant that I had a virus, which means I just had to take the wait-it-out approach. We proceeded to treat me for a CF exacerbation during my stay. This meant IV antibiotics around the clock and 4 treatment sets a day plus plenty of rest.

Well, it seems that that was just what the doctor ordered! Around day 9 or 10 I started to feel a little bit better each day. Let's back up a bit so I can put that into context.

I almost always feel worse than when I checked in for the first 3 to 4 days. Then from day 5 to 7, 8, 9 or 10 I pretty much feel how I did before I came in but with less energy and coughing up more junk. Then from days 10 or so on I start to feel better and better each day. At least this is how it works out under the good scenario, which has happened to be the way it's been for the last 2 years or so.

So this time, after 14 days in the Hole, I felt like I had my energy back and was at a place where I could kick some major booty outside of the hospital walls. I also blew a 75% which hasn't happened in the confines of the hospital for about 10 years!! Generally, I get it around 70% or so and then work hard to get it to baseline before my follow-up appointment a month later. So this time, I'll see if I can move my baseline up a bit.

Anywho, thank you again for your support, well wishes and prayers. It's good to be home again!!

Exercise Starts Early!!

Thankful Thursday: Spunk & RC Choppers

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 my parents. They have been the BIGGEST help with Ronnie in for a tune-up. I cannot say enough about how much help they've provided.

I'm thankful for a healthy 15 month checkup. Mckenna had her 15 month check up this morning and passed with flying colors. She's still our little peanut at just 18lbs 9oz and 28.75 inches tall, but she's healthy as can be and we are so thankful for that!!

I'm thankful for spunk and happiness. Mckenna is such a delight. She is full of energy and is a happy kid. She is such a blessing.

I am thankful Ronnie is getting better. His numbers are on the rise and hopefully will be back up to par in no time!! I'm thankful he works so hard and is willing to "do some time" to be his best for us!!!

Ronnie's List:

I'm thankful for remote controlled helicopters. My father-in-law got me a late Christmas/kill some time in the Hole gift in the form of an RC chopper. Creating different challenges like landing the chopper on top of my IV pole provides something to do besides slave away on my computer or watch TV :)

I'm thankful for understanding docs. Since the transition to the adult team here at UMC, they have gotten better and better with each stay. They are definitely putting more faith in me and starting to respect the "expertise" of my disease that I bring to the table. The transition was a little rocky at first, but I'm thankful that it's gotten better and better.

I'm thankful for the iPhone. The iPhone provides another great way to kill time. From games to FaceTime to searching for the latest and greatest apps, I've spent quite a bit of time on my phone. How did I ever survive without one?? ;)

So, what are you thankful for today?

Hemoptysis Episode and Children

Question:

I posted some questions on your blog a few weeks ago about how you manage having a baby with all the CF stuff. Thanks again for your response. : )

Here's another question: are you ever concerned about Mckenna's safety or your safety if you have a hemoptysis episode? For instance, if you were alone with her and you had a bad bleed? I have had periodic hemoptysis for nearly 20 years and had an embolization last year, but I still have random bleeds. For instance, last night I coughed up 1/4 cup, but I have no other symptoms of being sick right now. My husband and I have been discussing adopting a baby, but that does seem like a pretty big concern to me.

In addition, here's one more question. Do you feel safe traveling internationally if you are prone to bleeding? I have a lot of anxiety about it and don't really go anywhere too exotic for fear of an emergency. I saw that you went to Singapore, so I was wondering how you made that work.

If you could shed some light on how you deal with this scary and frustrating CF problem, I would really appreciate it. : )

.....

Answer:

I hope your Christmas season was a good one and that you are enjoying the new year thus far :)

To be honest, I've never been very concerned about having a massive hemoptysis and being alone with Mckenna. If it happens, it happens. There is always a neighbor or 911.

Bleeding on a flight is always a slight concern, but I do my best to avoid sudden movements as to control the already increased pressure in my lungs and I sit in the aisle. I used to prefer the window, but now I like access to the bathroom if and when I have a bleed. 

Most places have decent enough healthcare if you were to have an emergency. Singapore has top notch healthcare. I've also however spent a lot of time in China and they have no clue what CF is :)

Here's probably the best way to answer your question - I don't let my health dictate what I do or do not do. If I want to do something, I put myself in the best position to succeed, and I do it. I'm not going to let the chance of having a massive hemoptysis stop me from spending time alone with my daughter, or pursuing a family in the first place. I won't let the possibility of a bleed prevent me from seeing some of the most beautiful places in the world.

As long as I'm putting myself in the best position to succeed and working my butt off every day to be healthy, I'll reward myself with life!! :)

Hope that helps.

A Talking Machine

Mckenna is a talking machine these days. It is pretty incredible. It seems like most days she learns at least one new word, sometimes more. She has always been a chatty cathy - even when she's not using words, she's rambling in Mckennaese. But in the last few weeks, her vocabulary seems to be exploding.  She knows names, body parts, foods, verbs, prepositions, adjectives, you name it. Some of my favorite recent words are:

Gigi - Gigi is the name of my mom's mom (my Grammy). But Mckenna just learned the word when my parents good friends came into town and the wife, Wendy, wanted to try on her choice "grandma name"for size. So we told Mckenna her name was Gigi. Well you hear Mckenna searching around their house and ours for her beloved Gigi. 

Bird - Or "buhhd" to Mckenna. I'm not sure where she picked up the word. But I started noticing it when we were outside and she pointed to a bird feeder and said "buhhd". Perhaps Papi taught her the word on one of their many exploratory walks around the house together.

Please - "PUWEEEZ". Mckenna pulls this one out ALL the time now. She is still learning that "please" is polite, but it's not then a given that you get it. "That." "No." "PUWEEEEZ." "Up." "No." "PUWEEEEZ." "No, honey. Good job. That's polite, but it doesn't mean you'll get your way."....that's what my days look like now.

Medicine - "Memin" - This one really melted my heart. Mckenna touched Ronnie's PICC line and he told her not to, that it was "ouchy for Daddy." He then told her what this PICC was for, "it gives daddy medicine..." he said at some point. A couple minutes later he said, "Mckenna, where doesn't daddy's medicine go?" And Mckenna pointed at his PICC and said, "Memin." Ahh so sweet, Dr. Sharpe in the making.

Rio - With my parents recently moving back, Mckenna quickly got to know their dog, Rio. They have a love/hate relationship. She loves him. Loves to see him. Call for him. Bring him his toys. But Rio is a bit of a nut job! He moves fast. He often knocks her over as he runs past. He gives her lots of kisses, which she likes about 50% of the time. And even for all the complexities in their relationship, there is one this for sure...Mckenna LOVES to say "RIO!" She wanders around looking for him all the time. "Rio!" "RIO!" She calls. It is so cute.

And last, but CERTAINLY not least (in fact, it's the BEST one)...

I love you - "La lou" or "Ah La lou" - You want to talk about a heart melter!! "Please" doesn't mean she will get her way, but boy if she knew what "I love you" can do! Ha! She said it for the first time to Ronnie. He wasn't here and we were FaceTiming together. Before getting off the phone Ronnie said, "Mckenna, I love you," and clear as day, "La lou" she said back. I watched Ronnie melt to mush.

Our little Chatty Cathy is going to give us a real earful before we know it, I think. She comes from a long line of talkers (her Gigi, Nana, and Mommy are all talkers). So she comes by it honestly. As of now, I'm just enjoying hearing more and more of what's going on in her little mind. She is such a fun, goofy, vivacious, little spark plug! I love it!!

Thankful Thursday: Hospitals & Views

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 my parents. With Ronnie in for a tune-up, I'm been blessed to get to spend a lot of time with my parents and have their help with Mckenna. I am SO thankful they're back.

I'm thankful for hospitals. It's not ideal that Ronnie is getting a tune-up, but my goodness am I thankful that there are hospitals and CF care to take care of my hubby.

I'm thankful for a smart husband. Ronnie knows what to take care of himself. He doesn't want to be away from Mckenna and I, and I know he hates putting his life of hold. However, I am so thankful that he does. It's important to nip whatever he has going on in the bud before it has time to permanently affect his health. I'm thankful that he knows that and does what he needs to do!

Ronnie's List:

I'm thankful for the cavalry. Like I wrote about yesterday, I just feel so blessed to have my CF team behind me and to have access to great medical facilities. I've been coming to this hospital since I was 6 months old and it truly feels like a home away from home. Can't wait to get back to being on top of my game!

I'm thankful for dry cereal. I won't be eating 5 meals a day while here in the Hole, so its a good thing that I have some snacks around. The cereals of the day currently are Life and Frosted Flakes. I probably should watch my intake however because I could easily down the box in one sitting.

I'm thankful for a nice view. The key to being a patient at UMC is to have a room with north exposure. That way, you get to see the beautiful Catalina Mountains off in the distance and enjoy some of the other scenery. I'm always pleased when I land on this side of the Hole.

So, what are you thankful for today?

Time to Call In the Cavalry!!

It all started the night of December 22nd. Before turning it in for the night, I told Mandi that I would wake up with a sore throat that next morning. Despite taking some preventative measures, sure enough, I awoke the next morning with a nearly closed and sore throat. That's how it all started. It was closely followed by a runny nose, a stuffy nose, a "full" head and an ear ache. I knew that my only chance to fight through it would be increased treatments, rest and fluids. With the holidays fast approaching, I knew this would be tough.

Thanks to my wife, I was able to rest quite a bit in the weeks that followed. In fact, I was still in bed at 10:30am on December 23rd! I don't think I've stayed in bed that long since I was in college. I also stuck to my usual 3 to 4 treatment sets a day, but with Mandi's help, was able to extend many of the sessions from 30 minutes, to 1 full hour. It also helped to have so much family around to share of the burden of looking after Miss Mckenna. As you can imagine, she's as active as ever, always moving and quite the energy drain!!

I battled with all that I had over the holidays, but unfortunately, things continued to get a little bit worse. This cold/virus/what have you continued to make its way down my body into my chest, stomach and joints. My cough my junkier than normal. My mucus production had increased. My cough was more frequent. Every joint in my body ached. And food started to look less and less appealing.

I had some days that were better than others, but there has not been a day since December 23rd that I've felt better than 75%, with most days being closer to 30% or 40%.

In somewhat of a serendipitous moment, I happened to have a long-standing CF clinic appointment on January 7th. This was the same clinic appointment that just a few weeks earlier I was thinking about rescheduling into February, but never quite got around to it. I'm so glad that I kept it for this past Monday.

In the week leading up to clinic, I had gotten worse in terms of my cough and mucus production. I started sleeping upright with a cough drop in my mouth just to try and make it through the night. It didn't work all that well and most nights I was up coughing a majority of the time. I tried NyQuil, Tussin CF, Robitussin 8 hour cough relief, cough drops and a combination of all of those with no success. I'm sure that they helped, but not enough to get a decent nights sleep.

And for me, the biggest problem that I had during this two week battle with whatever it is - I've only been to the gym twice. That's just simply unacceptable. That's what keeps me at my best and out of the Hole.

I knew that I was going to have to call in the cavalry. And on January 7th, the cavalry agreed.

So that's where we are today. I called for help and help arrived in the form of a hospital stay. If you've been reading this blog for any amount of time, you know that that is a-ok with me! I'd rather feel cruddy in here with a chance to get better, than cruddy at home getting worse. For me, it's so important to get in here before I hit the bottom and instead, catch myself on the way down. I'm very fortunate, that at least according to my PFTs, whatever this is hasn't affected my lungs negatively all that much.

They say I sound worse than I usually do, but they also say that I sound pretty good. I was expecting a low FEV1 for me, but instead I blew a 65%. I was shocked and relieved. I think the work I put in before I got sick and the work I put in during (with the help of my best ever wife Mandi) is the only reason I didn't see a drastic dip. We were joking at the clinic appointment that it could also be that I'm coughing more than normal and clearing what feels like gallons worth of gunk every day.

Anyway, I'm so thankful for the cavalry. I'm thankful for their trust in me. I'm thankful that they gave me the opportunity to put myself in the best position to succeed. I'm thankful for their support of me and my family. I'm so thankful that I have a cavalry that works as hard as I do.

First Night Apart

This weekend was a big weekend from Mckenna, Mommy and Dada. Mckenna spent her first night away from home without us!!

Ronnie and I got tickets to the UA basketball game on Saturday from one of my co-workers (THANKS MELANIE!) so we asked my parents to watch Mckenna for the day. They took us up on the request and offered one better...to take her OVERNIGHT, so we didn't have to hurry home from the game. We, of course, took them up on it.

Saturday morning after Mckenna's first nap, Nana and Papi came and picked her up. As soon as they left, Ronnie and I hit the road for Tucson. It felt strange. It was weird to be in the car together, without Mckenna. It was strange leaving for the day and not worrying about nap time, toddler-friendly activities, or getting home for bath and bedtime. It was weird, but really nice. Mckenna LOVES her Nana and Papi and is more than comfortable with them and being at their house. So I didn't worry about her one bit, which helped make the day even more enjoyable.

Mckenna, Nana and Papi went on an adventure to a stone store (AKA an errand that Nana and Papi needed to run, but they dressed it up as a fun activity), stopped for lunch at McDonalds for Mckenna to have her first happy meal, and went home just in time for her nap. After her nap, they snuggled up and watched a movie, had dinner, and then it was bath and bedtime. Mckenna slept like a champ and when she woke up they watched toy story (and by they I mean Nana and Papi...Mckenna had the attention span of a gnat, so she played, but Nana and Papi realized they LOVE Pixar Movies. HA!) Then it was they had breakfast, went to church, took a nap, had lunch, and then I went and picked her up. I knew she was totally fine when I got there and I was chopped liver because she was too excited about helping Nana with a chore she was doing! Success!

Meanwhile, Ronnie and I hopped in the car, drove to Tucson, grabbed a slice of pizza (which was awesome), enjoyed the game, grabbed Chinese food, and headed home. Unfortunately, the Chinese food MAYBE wasn't the freshest because I spent some of the night on the bathroom floor. Strangely enough I never actually puked, just had a gnarly upset stomach. So I didn't quite get the refreshing night sleep I was anticipating. But thankfully, this morning I woke up feeling awesome, so Ronnie and I organized our third car garage, and then I headed up to get Mckenna while Ronnie finished up the organizing. Success!!

Thankfully the whole experience was incredibly positive for all parties involved!

Here are some pictures (and a video) so you can get a taste of the weekend:

Mckenna trying her "overnight bag" on for size. She's pretty excited about it!

Us on our way to Tucson, we look pretty excited!

Mckenna sizing up her Happy Meal

Washing down the grease with Nana's help.

 Heading into Nana and Papi's carrying her very full overnight bag! She looks SO old!!

Ronnie EXCITED about seeing his Cats play!

We look a little tired...we're not used to all this fun!

The garage in progress. We put together those shelves...so before we started, ALL those boxes and bins were all over the floor. If you think it looks bad here, you would have puked if you saw it before!

                          

...And just to prove we've still got it...and by "it" I mean no shame!

Sleepy Head

Listen for her little sleepy "hi" at the beginning of the video :)

Thankful Thursday: New Words & New Toys

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 carmel corn. Ronnie's brothers gave me carmel corn for Christmas and let's just say the bag is almost gone! It is SO yummy. They know me so well and know that I like sweets that are crunchy and that I can kind of pick at (or eat piece by piece). It is the PERFECT dessert.

I'm thankful for new words. Mckenna seems to be learning a new word every couple of days it seems. She's such a little chatty cathy and I love it. I absolutely LOVE hearing how she says things. Words like PEEZ (please) and Dayn du (thank you) have never sounded so adorable. I think some of my favorite words she's learned in the last few days are WEE-O (Rio, my parent's dog) and Zooz (Juice...Also said like "Jews" if she gets the J sound a little more dead on). I am so blessed to have such a sweet little love jabbering around the house.

I'm thankful for silly games. Mckenna invented a game. It's called "BUH BYYYYYE". She shouts "BUH BYYYYYE" at me, I shout it back and run away, and then run back when she yells "Mommy." "BUHHH BYYYE"...."BUH BYYYYE"...run away...."MOMMY"....run back. "BUH BYYYYYE"......you get the point. She gets increasingly sillier and louder as the game goes on, and she laughs uncontrollably. Occasionally she can't get out the words she's giggling so hard. I absolutely love the game because I love her sweet giggles. I am so thankful that she is so silly and is now trying to initiate fun games and does things to be goofy and make us laugh.

Ronnie's List:

I'm thankful for new toys. What's funny, is it's not even my toy, but my father-in-laws. Josh (my brother-in-law) got his dad a remote controlled helicopter for Christmas. Not only was it a ton of fun, but it was super addicting! And yes, I have my eye open for one of my own :)

I'm thankful for a new year. I'm not a resolutions kind of a guy, but I'm just thankful that time is still ticking. Another year passed is another year that I'm married to my wife, a dad to my daughter and son to my mom. If this year is anything like last year or the previous 32, it will be awesome!!

I'm thankful for the "end" of the "Fiscal Cliff". Personally wish we had just gone off of it, but at least we don't have to hear about it anymore...until next time.

So, what are you thankful for today?

2012 Year in Review

Here's the best that I can remember from 2012 with links to many of the highlights...

January-In January Mckenna was turning 3-months old and still quite the little peanut (that hasn't changed). I was able to show off my  "daddy skills" as Mandi returned to work and left me on Mr. Mom Island. It's still very enjoyable to spend one-on-one time with Mckenna and something I very much look forward to each day. We also had our first road trip as a family of three when we made our way out to California to visit with Auntie Kirra and Uncle Tyler!

February- I celebrated my 32nd birthday by documenting the entire day in pictures. Mandi got me a sweet camera for Christmas that ended up not getting to us until February because of the terrible tsunami in Japan. I went a little picture crazy to say the least! I was hospitalized for 14 days and issued a Hospital Exercise Challenge. Mckenna "clearly" missed me while I was in the Hole, but she did manage to role over while I was there.

March- After being released from the hospital I hit the exercise really hard! I'm still convinced that it's the best medicine ever and that doing a little bit of something is better than doing a whole lot of nothing. Mckenna starting getting to that stage where she actually knew who we were and didn't want us to leave and entertained us most of the month with her sitting skills!

April- In April, I took part in a Health Blog Challenge that produced some very different posts than usual like which superpower I would choose and writing a letter to the 16-year-old me. We had a great Easter celebration with family down in Tucson and managed to get in a pretty cute photo shoot with Mckenna. 

May- In May I was inspired to push myself even harder after a motivating conversation with a fellow cyster. Mandi and I celebrated our 2nd wedding anniversary, in Singapore of all places, and Mckenna started walking all over the place...with assistance. 

June- We took our annual family trip to Rocky Point, Mexico where Mckenna amazed us all with her ability to sleep in ANY position. Mandi was trying to get back in the saddle after back-to-back vacations while I was realizing that there will never be a "perfect time" to start a quest into personal responsibility...you just have to do it! I didn't get to spend my first Father's Day at home, but I got to hang with fellow cyster Beth Peters at a great event she organized in Boston.

July- It took 8.5 months, but Mandi finally got the itch again...the itch to actually want to work out! Mckenna started to figure out that she could walk around the house with things other than her walker. It was a pretty chill month for me, but I did encourage people in the CF community to get selfish!!

August- It was back into the Hole for me this month for an 18 day stay. Technically, I went in on July 30th, but most of the visit was in August. Mckenna had a blast riding on the IV poles and "walking" while mommy "sang". The highlight of our month however may have been our first date night since becoming a family of three.

September- Mckenna spent some time in a monkey pit at the beginning of the month, showing us all why you shouldn't eat off our counters in the middle and then wrapped the month up  by doing some laundry. I did some reflection on why my wife can't only be my best friend while Mandi reflected on feeling like a total loser at the gym :)

October- Mandi and I had begun to make date nights "old hat" by this time, which we weren't so sure the service industry appreciated. Mandi was working with Mckenna on developing her vocabulary  and I don't think she has stopped talking since. We had two special birthdays back-to-back with Mandi on the 16th and Mckenna on the 17th. We also debuted a teaser called Living Xtreme: Beyond Cystic Fibrosis which we had been working on for almost two years with The Essential Image Source Foundation and The Cystic Fibrosis Lifestyle Foundation. And then of course, the month would not have been complete without a little bit of trick or treating on Halloween with Mckenna the cupcake! 

November- Even though Mckenna's birthday was in October, we waited a couple of weeks for my in-laws to be in town before we celebrated! Mckenna rocked out on a piano while Mandi reflected on the wisdom literally being torn right out of her head in the form of teeth. We had another successful Outrun CF event, this time on Thanksgiving Day, that saw the most participants ever!!

December- Best part of December was getting Eric and Nancy (my in-laws) back home for good as they lived in China or Singapore during Mandi and my entire relationship. I love both of them so much, and they are a great nana and papi to Mckenna. Speaking of Mckenna, she blew our mind with how observant she is, and made us think twice about what we do or say around her. Christmas was of course a great time with family, snow (we did Polar Express again!!) and presents (Mckenna is very good at opening them). As a bonus, our Aunt Vicki from Kansas City joined us for the festivities this year!!

Most viewed blogs this year:
Enzymes: Its all about the poop
The Start of My Kalydeco Journey
My Cystic Fibrosis Mantra

I want to take this time to thank all of you for taking time out of your busy schedules and checking in on us from time to time. This year, we saw RSBR top 1,000,000 views. It's still mind blowing to me that we have even had 1! I'm so humbled by how many of you continually leave comments of encouragement and support. You've seen our family change in big ways and are always there to lend a few tips and tricks when we need them. 

Again, thank you, thank you thank you from the bottom of my heart. Have a safe and happy New Year and I'll see you guys in 2013.

Love from my family to yours,

Ronnie

Three Fry Challenge

Thankful Thursday: Cookies & Christmas

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for Christmas. The fact that God sent his only Son to this earth to save someone like me is totally mind-blowing to me!! I am so thankful that we can celebrate that each year with family time, traditions and gift giving!

I'm thankful for being so blessed. As I looked under our Christmas tree at all the presents and watched my loved ones all around the tree I couldn't help but feel so blessed. That fact that we have each other to be with and be so spoiled with things made me feel like I had more than I ever deserve!!

I'm thankful for cookies. Yup. I said it. Christmas cookies are SO good. I am SO thankful that I got to eat WAY too many of them this year!

Ronnie's List:

I'm thankful for the great time with a bunch of family over the last few days. Presents are awesome, but they pale in comparison to the time spent with family. I love each and everyone of my family members more than they will ever know, and feel so blessed to have each one of them in my life. I'm one lucky dude.

I'm thankful for a talkative daughter. I'm not so sure that I will always feel that way, but for now it's awesome. Mckenna is at that stage where she gives every word the old "college try" and even though many words sound exactly the same, it's still cute as all get out.

I'm thankful for thoughtful gifts. One thing my family is great at is thoughtful gifts. They're always listening throughout the year for what we all really need and not just that latest and greatest gadget (although there were a few of those to play with as well). Most gifts that Mandi and I received for Christmas are going to last a lifetime and that rocks!!

So, what are you thankful for today?

MERRY CHRISTMAS TO ALL, AND TO ALL...CHECK OUT THIS PUPPY!!!

They Are ALWAYS Watching!!

(I posted this on Facebook the other day, but I wanted to make sure that you guys saw this too. Not only do I think it has a good "life lesson", but I'm still amazed at the mind of a 14-month-old.)

Make sure you stick around for the moral of this story...

Mandi and I had an empty case of Gatorade sitting by our back door. By our back door is generally where we put large recyclable items that don't fit in the recycle container. Tonight, Mckenna (our 14-month-old daughter) walked over to the empty case and picked it up by one hand. With the other hand, she pointed at the back door and said "That!". We opened the door. She then proceeded to go out into our backyard with the empty Gatorade case in hand. We followed her. She walked about 60 feet along the back of our house until she got to a gate that leads into our side yard. She stopped at the gate, pointed to it, and said, "That!". We opened the gate. Mckenna then walked another 60 feet along the side of our house, still dragging the empty Gatorade case, until she got to two receptacles - one for trash and one for recyclables. I asked her which one the box went in and she pointed to the blue recycle bin and said, "That!". Mandi picked her up, opened the lid and Mckenna dropped the empty case in the recycle bin.

What's the moral of this story? Our kids are watching our every move. They watch what we eat. They hear what we say. They see how we react. They take in our emotions. They do what we do.

Children mirror their parents. Even at such a young age, the learning for "real life" is taking place.

Children learn what's right and wrong from two sources, and two sources only - the parents, and the teachers that the parents allow in their child's life. Be a good model for your child and choose your teachers, even the non-human kind, wisely.

Thankful Thursday: Polar Express & Headphones

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:

Ronnie's List:

I'm thankful for the Polar Express. Today, we head up north to Williams, AZ and then WAY up north to the North Pole courtesy of the Polar Express :) We went last year for the first time when Mckenna was only a couple months old and had a ball. We hope to make it a tradition for our family.

I'm thankful a daughter who seems to have a good time doing pretty much anything. I really have no frame of reference, but Mckenna sure seems like a cool kid. She's down to do anything and usually tries it with a smile on her face. She's just a joy to be around!!

I'm thankful for good headphones. Nothing is more annoying than fidgeting with the headphone jack to make the sound come through just right or having only one ear producing sound. There was a super deal on some headphones on GroupOn a little while back and I capitalized. Glad I did.  

So, what are you thankful for today?

Are you full of ideas?

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

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

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

What is it?

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

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

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

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

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

I'd like to invite you to take part.

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

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

Who am I?

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

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

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

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


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