Thursday, December 13, 2012

Thankful Thursday: Blankets & Costco

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 blankets and covers. It's been getting cold at night and there is nothing better than being able to snuggle under a blanket or under the covers in bed. Some people aren't as fortunate and they're just cold on cold nights. We are so blessed to be able to warm up.

I'm thankful for cable. Ronnie and I love to sit at night and watch our favorite shows together. We usually can sneak in 1-2 a night. I am so thankful that we are able to have TV and watch shows together!

I'm thankful for ice cream. I had ice cream last night, and holy moly do I love ice cream!!

Ronnie's List:

I'm thankful for Costco. Mckenna and I go there at least once a week for a daddy date. We stroll the aisles, eat samples and usually snack on grapes. Her favorite part of the date though is getting the receipt from the cashier and handing it to the guy or gal at the exit. They always draw her a smiley face and she gets a kick out of it!

I'm thankful for technology. We're testing out a new feature that we'll be bringing to CysticLife in the near future, and I'm very excited about it. I won't reveal what it is quite yet, but I'll tell you this, people are going to dig it!! It will allow us to get to know each other even better and will take the social part of to a whole new level!

I'm thankful for being ahead of the shopping curve. I'll admit, I went a little cuckoo with the Christmas shopping this year. Not that I went overboard, but that I was already shopping, in March. That's right, March. I will say, it's nice to have 75% of the Christmas shopping done before the mad rush begins.

So, what are you thankful for today?

Wednesday, December 12, 2012

Love those "teefers"

Tuesday, December 11, 2012

The Best Treatment for Cystic Fibrosis

I often get asked about the best treatment I use or do when it comes to managing (or as I like to call it, "kicking the crap out of") Cystic Fibrosis. This is probably one of the easiest questions that I get asked. The best treatment for cystic fibrosis is undoubtedly, unequivocally, no doubt about it... the one that you'll actually do and do consistently.

That's the real struggle isn't it? We all know that treatments work. Anyone who says to me that they consistently do treatments and it doesn't seem to help, generally fall into one of two different camps - They've either waited too long to decide to do treatments consistently or they have a hard time telling the truth. Is there somebody out there who has tried every different treatment option available, given it all that they have and still doesn't feel any positive effects from treatments? I'm sure there is. But I'm also sure that that person isn't you and that person isn't me.

Growing up I was good at doing the limited treatment options available to me, because my mom was good at making sure I did them. It wasn't an option in my house to miss a treatment and when I did, I suffered. No, usually not health wise, but, "what-I-wanted-to-do" wise. If I decided that a treatment wasn't going to happen a particular morning or a particular night, my parents then decided what wasn't going to happen for me later that day or the next. That could mean no hanging out with friends, no football practice, or no leaving my room unless it was for school. I'll tell you what, because they were consistent and because what they said they would do, I rarely missed a treatment!

Now, did I nail the doing all my treatment thing when I moved out of my parent's house? Nope. I nailed it about half the time. As a result, I lived about half the quality of life that I would have had I taken care of myself consistently. It wasn't until people came up to say goodbye to me in my ICU room in 2009 that I finally "woke up". The last thing I want for my cysters and fibros out there is that!

So, to my friends out there with cystic fibrosis, stop thinking about it and just do the darn thing! If that darn thing isn't working for you then find another darn thing that will. It may take some effort and commitment on your part but if you're serious about either staying or getting healthy, you can make it happen.

To the parents out there, don't allow your children the option of not doing their treatments. Sure, they can pick what to do, when to do, how to do, or where to do, but they should have no control over the to do or not to do! Follow that? And another thing, start immediately! Don't wait to implement this groundbreaking strategy until they are (fill in the blank) years old. Adherence to treatments starts from the day they are born on and so does non-adherence to treatments.

What treatment option have you found works best for you "kicking the crap out of" Cystic Fibrosis?

Monday, December 10, 2012

Mckenna Monday: Life is Awesome

It's been awhile since Mckenna has posted an update about her little life, so I decided it was about time.

Mckenna, can you tell us about your life lately?

Life is awesome. The weather finally has cooled off, so I get to play outside at any point in the day. Mommy and Dada actually just open up the back door for me and let me come and go as I please sometimes. Our backyard has a wall around it, so I can't go too far, but I can play in the grass and I have special toys that have to stay outside, and I play with those while I'm out there. I have this cool hand rake thing that I can use to comb the grass, and a basket to hold my toys that I like to pretend is a purse. Also there are these things that have fallen from our trees lately, and I like to crunch them in my hands.

I am starting to be able to talk to Mommy and Dada a lot! I know lots of words and they come in handy because when I say them, people know what I'm thinking and meaning. I say hi to people and bye to people with a wave and the words. I have gotten really good at it because I go to the gym play area every day, but instead of playing, I like to stand at the gate and wave at everyone coming and going. They call me "the greeter"...whatever that means. I also have found a word that works great, it's "that". I say that and point at things I want to know what they're called, want to have, you name it. My parents have trouble figuring out what I'm talking about, but they try hard to guess. Not only do I use my words, but I sometimes tell them with my hands too. I tell them I want milk with my hands (usually when I'm sleepy and ready for bed), and that I want more (which I also use when I'm hungry and want to eat), oh and I tell them that I'm all done (but that I say with words too).

Oh yeah, and I just figured out a cool new thing to do in the tub. If I put my face in the water and blow, I make little "blub blub" sounds and these things my mom calls bubbles appear. I love doing it, but I get a little scared. I lean really close to the water, but then I get nervous because sometimes I forget to blow and instead breathe in and that's not fun. I cough and cough and cough! But when I really pay attention I do it right and I love it!

My Dada and I go on special trips he calls Daddy Dates. We go to fun places while Mommy works. My favorite fun date is this place called Costco. They have tons of fun things to look at and Dada gets snacks for me as we walk. They have yummy snacks. I love them all. Sometimes Dada doesn't even like the snack, but I do because I'm not picky. 

Oh and I started spending time at this place I kind of remember, but it's been awhile since I've been there. It's called Nana and Papi's. I guess it's where my Nana and Papi live because I helped my Nana unpack a bunch of suitcases, so it looks like they'll at least be there for a long time. I love being at Nana and Papi's. Papi takes me on walks just the two of us to explore. He also lets me get on this BIG table. It's covered with this soft fabric and has all these balls that I get to crawl around and put them into pockets. I think they called it pool, but I don't know because I thought the pool was the thing in the backyard that they say, "NO Mckenna!" when I go near. Hm, I'll have to listen when I'm there tomorrow to play with them!

Well I gotta go play with my baby, I think I need to push her in her stroller and feed her a bottle. I love my baby!