Friday, October 12, 2012

Can I Have Some?

Mandi has been working with Mckenna on this phrase for quite some time...I think she finally got it!

Thursday, October 11, 2012

Thankful Thursday: Discipline & Grape Nuts

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 hard workouts. Do you ever have those days where you don't want to workout at all? Yesterday was one of those days. But I went anyways and got my butt today kicked in class, and I LOVED it. I am always so thankful for a hard workout. It always makes me feel like there was a point to actually going to the gym and taking the time.

I'm thankful for a disciplined hubby. Ronnie is so disciplined. He hasn't wavered on his exercise and eating plan these last couple is SO impressive and he looks fabulous. I am just so thankful that he is a man who is disciplined and takes such a great care of himself. I love him...A LOT!

I'm thankful for scented candles. They just smell so yummy, and make your house smell so yummy. I have started celebrating fall with some fall-ish candles and it is AWESOME. Our house smells like pie almost all day...who wouldn't be thankful for that?!

Ronnie's List:

I'm thankful for nose spray (Fluticasone). I haven't always been consistent with the stuff, but when I am, I know it. I'm a "sniffer" by nature and the spray definitely helps keep everything dry in there and prevents *some* of the sniffing. I don't think it will ever go away however because at this point it's as much habit as anything :)

I'm thankful for Grape Nuts. I just recently had some Grape Nuts cereal and it really took me back to my childhood. When I was young I used to eat A LOT of cereal and Grape Nuts were one that I really enjoyed. Difference between then and now? Then, I used to pile on - literally pile on - a ton of sugar and drench it with whole fat milk. Now, no sugar and fat free milk. Same same but different.

I'm thankful for this blog and it's ability to keep family members in the loop. I'm not a big phone conversation guy so it's tough to keep my family abreast as to what is going on with the Sharpe clan. However, through this blog, many of my family members are able to see updated videos and pics of the family as well as insights into what's been happening lately. I'm especially thankful that my Dad takes the time to read this every morning. He probably knows better than anyone what's going on in our lives!!

So, what are you thankful for today?

Wednesday, October 10, 2012

Question from a Reader: What can I say?

Another great question and I'm sure far too often occurring situation in the CF community. I can understand his frustration and confusion during these events and with the "CF Life" in general:

My problem is my son, who is now 10, and has had a lot of horrible experiences with lab draws but of course needs to get them at least once a year if not more. Beyond being a hard stick he gets anxious so the more time drawn out looking for veins the more he fights. Our regular lab flat out refused to draw his blood work today because 4 technicians couldn't find a vein and when one went in to attempt to do a draw on what he though was a vein [Child's name] refused to hold still. The day pretty much left both of us in frustrating tears. 
He argues the point of "Why do I need to have all these sticks if I don't feel sick?" I don't know whether to say "CF is doing more damage than you realize and watching it now may prevent major problems later" or "While we are responsible for you , you'll get the tests we feel will benefit your health". Both sound harsh but I don't know where else to go with it.

"While we are responsible for you , you'll get the tests we feel will benefit your health". That was pretty much my mom's response while growing up. My roof, my rules and under my roof, your health is number one. We can choose to be proactive, reactive or non active. And under my roof, we're proactive. Also, there is nothing wrong with rewarding good behavior and not rewarding behavior that isn't acceptable.

[Child's name], when you hold still and are brave for the blood draws today, you can pick the restaurant that we go to afterwards.

With that said, next time 3 technicians can't find a vein, you can feel free to "protect" your son and step in and say "I'm sorry, but 3 different techs not being successful is good for today. We'll reschedule and hopefully have better luck next time"

Be sure he is drinking a TON of water on the days he's going to get a stick to really pump up those veins.

And last, nobody walking the earth with CF was perfect as a teen/pre-teen. We'll all make mistakes. Make stupid decisions, etc. What we love though, without saying it, is when our parents put our health number one and love up on us 24 hours a day.

There is no greater love in my opinion than a CF mom holding the line and doing what's best for her CF child and other children of course!!

Tuesday, October 9, 2012

Honey Banana Oat Bars

I've been trying to eat healthier lately. This has meant trying to stay away from processed foods as much as possible as well as white sugar, white flour, etc. I've been doing really well so far, although this new lifestyle does conflict a bit with my sweet tooth. See, I love having a little sweet snack with a cup of coffee after dinner. I've been searching the internet looking for "clean" dessert or snack recipes I could try, and fortunately have stumbled upon quite a few. 

This recipe is based on one that I found on If you'd like to see the original recipe, click here. We made some modifications to ours.
Perfect with a cup of coffee.


1 1/4 cup of rolled oats
1/4 cup of brown rice flour 
1/2 tsp baking soda
1/4 tsp salt
1/4 cup of honey plus 2 tbs for top glaze
2 tbs of grape seed oil
1 tsp of vanilla extract
1 egg
2 medium bananas 


1. Preheat the oven to 350 degrees and grease an 8x8 baking dish.
2. In a medium mixing bowl, combine the oats, 1/4 cup honey, oil, and vanilla. Set aside.
3. In a small bowl, combine the flour, baking soda, and salt. Briefly set aside.
4. Returning to your medium mixing bowl, stir in the egg, and banana, until everything is well combined. 
5. The batter will be a little thick. Spread it evenly in your greased baking dish, and pop it in the oven for 25 to 30 minutes, or until a toothpick inserted in the center comes out clean.
6. Let cool completely before cutting. I cut them in 16 1 inch by inch bites.
7. Spread 2 tbs of honey evenly on top.

Nutritional info per bite:

Servings: 16
Calories: 97
Fat: 2.8g
Carbohydrates: 13.5g
Protein: 2.2g

Let me know if you give this recipe a go and how you like them! One more tip - I warm them up in the microwave for 15 to 20 seconds before I eat them :)

Monday, October 8, 2012

Words, Walking, and Party Planning

It's been awhile since I've updated, but since I'm becoming quite the big girl lately, I figured I should write and tell you about my life these days.

First things first, HAPPY BIRTHDAY UNCLE JOSH!!!!

Ok, onto the updates. I'm now trying to get around on just my feet, instead of my hands and knees. My mom and dad call this walking? I dunno what it's called, it's just what I see everyone else doing, so I'm giving it a whirl. It seems to be a good change. I think once I get the hang of it, I'll be able to get around faster. Right now it's slower because I fall on my tush pretty often. So it's up, walk, fall, up, walk, fall. It's a bit exhausting so I finally decide to just crawl until I reach my destination. But I don't want to give up because it's pretty cool doing what everyone else does. Mommy and daddy let me walk around stores and outside and everything. I hold their finger and they walk around with me. They usually only hold my left hand because for some reason I just walk in circles if they hold my right hand. It's kind of weird but I can't help it. Also, shoes are my kryptonite. My legs and feet don't work the same with shoes on. I fall flat on my face because I can't get my walking down in those dumb things. So for now mom and dad let me walk barefoot around most places. My feet get dirty, but they don't care. They are constantly trying shoes, so I will get it soon, but just not yet.

I have learned a few key words. There are two that I use all the time because they help me talk to my mom and dad. First is "that". I point and say "that" to things I want, things I want to have mommy and daddy say what it is, and sometimes just to say it. I say "that" a lot. Like a lot, a lot. Like all day long. Sometimes it seems like my parents get a little bored with the game I like to play...(point), "that," "that's a chair."....(point), "that," "that's a chair."...(point), "that," "that's a chair."...You get it. The other word I say non stop, all day long is, "up". It's so cool. I can stand at someone's feet and say, "Up," and they know I want to be picked up. It only works about 50% of the time though. Sometimes they pick me up. Sometimes they say, "One minute, my hands are full" or "you need to play right now, mommy and daddy are busy." I sometimes throw a fit when they won't hold me. I whine and throw my body around...but it doesn't work. Oh well, I'll keep trying and see if it'll start making them listen to me more, but usually fits just make them not pay any attention to me...which is no fun.

I also have learned how to use my hands a bit to tell them things. Mommy hasn't taught me sign language, but I make up my own sometimes. I put my hands up, shrug my shoulders (to show I'm asking a question), and say, "duba da?" when I want more while I'm eating. "duba da" means "can I have some?" And then they give me more food AND they tell me I'm cute. I like it.

Last update, I'm throwing a party. Yup, my very first party. It's called a first birthday party. I sent out an invite yesterday to friends and family. What you do is you pick a date, you make an invitation online, and you email it. Then I'll help mom decorate and clean and bake, and we will have a first birthday party. I think to help I'll probably just say, "up" a lot at my mommy's feet, point at all the stuff that's out and say, "that" over and over again, and then maybe throw a fit or two. Oh, and maybe play with the Swiffer to help clean because I love that thing. We are going to have TONS of sweets and it will be a lot of fun. I already tried on my dress for the party that my Auntie Kirra sent me. And Nana and Papi already sent some presents. I think I'm going to like my first birthday party!