Who needs a walker??

I'll give her this, she's resourceful!!

Thankful Thursday: Spontaneity & Oxygen

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 spontaneity. We decided on Thursday last week to go to Florida for the weekend to see my Grammy. So we bought out tickets and were off the next day. We aren't spontaneous like that very often, but I love when we are...especially with Mckenna. I'm hoping we can keep it up. I'm thankful that we're not totally boring...YET!

I'm thankful for family. We got to spend a lot of time with family over the weekend and it was AWESOME!! We all had so much and there's nothing better than fun time with family. We have the best family!

I'm thankful for carpet. My grammy's house has a lot more carpet than ours does, and it sure is nice not having Mckenna crack her on tile...all day long! I think Mckenna is probably thankful for carpet too. Mckenna is pulling up on everything these days, even things that aren't very sturdy, which leads to lots of falls. Plus, she's getting really brave and letting go of things to just stand on her own or to dive for other things. All of it means she's taking lots of falls. 

Ronnie's List:

I'm thankful for an easy going baby. Mckenna seems to just go with the flow despite what situation we put her in. She's certainly not a bump on the log, but she also seems to be pretty happy no matter what. I love that we can get her to smile at the drop of a dime...or anything that makes noise really :)


I'm thankful for the decision to sleep with oxygen. It's been quite awhile that I've been sleeping with the stuff, but there still are times that I can't sleep with it. On short trips, I never bring the oxygen concentrator with me, but on long ones we'll rent a unit. It's during those short trips that I appreciate coming home to the oxygen even more...it's amazing how much better I sleep!

I'm thankful for breaded shrimp. I don't eat anything breaded that often, but when I do, it's always good, especially shrimp. There are times I wish that we lived closer to an ocean so I could enjoy the fresh stuff, but then again, if we lived near an ocean, we could only afford to eat Ramen.  

So, what are you thankful for today?

Why are American kids so spoiled??

I read a fantastic article the other day that I just had to share. I think that much of it can help parents out there of cysters and fibros, as well as kids in general. I won't share the entire article here, but I encourage you to click on the link provided and check it out. Come back here and tell me what you think!!

In 2004, Carolina Izquierdo, an anthropologist at the University of California, Los Angeles, spent several months with the Matsigenka, a tribe of about twelve thousand people who live in the Peruvian Amazon. The Matsigenka hunt for monkeys and parrots, grow yucca and bananas, and build houses that they roof with the leaves of a particular kind of palm tree, known as a kapashi. At one point, Izquierdo decided to accompany a local family on a leaf-gathering expedition down the Urubamba River. 

A member of another family, Yanira, asked if she could come along. Izquierdo and the others spent five days on the river. Although Yanira had no clear role in the group, she quickly found ways to make herself useful. Twice a day, she swept the sand off the sleeping mats, and she helped stack the kapashi leaves for transport back to the village. 

In the evening, she fished for crustaceans, which she cleaned, boiled, and served to the others. Calm and self-possessed, Yanira “asked for nothing,” Izquierdo later recalled. The girl’s behavior made a strong impression on the anthropologist because at the time of the trip Yanira was just six years old. 

While Izquierdo was doing field work among the Matsigenka, she was also involved in an anthropological study closer to home. A colleague of hers, Elinor Ochs, had recruited thirty-two middle-class families for a study of life in twenty-first-century Los Angeles. Ochs had arranged to have the families filmed as they ate, fought, made up, and did the dishes. 

Izquierdo and Ochs shared an interest in many ethnographic issues, including child rearing. How did parents in different cultures train young people to assume adult responsibilities? In the case of the Angelenos, they mostly didn’t. In the L.A. families observed, no child routinely performed household chores without being instructed to. Often, the kids had to be begged to attempt the simplest tasks; often, they still refused. 

In one fairly typical encounter, a father asked his eight-year-old son five times to please go take a bath or a shower. After the fifth plea went unheeded, the father picked the boy up and carried him into the bathroom. A few minutes later, the kid, still unwashed, wandered into another room to play a video game. 

In another representative encounter, an eight-year-old girl sat down at the dining table. Finding that no silverware had been laid out for her, she demanded, “How am I supposed to eat?” Although the girl clearly knew where the silverware was kept, her father got up to get it for her. 

In a third episode captured on tape, a boy named Ben was supposed to leave the house with his parents. But he couldn’t get his feet into his sneakers, because the laces were tied. He handed one of the shoes to his father: “Untie it!” His father suggested that he ask nicely. 

“Can you untie it?” Ben replied. After more back-and-forth, his father untied Ben’s sneakers. Ben put them on, then asked his father to retie them. “You tie your shoes and let’s go,’’ his father finally exploded. Ben was unfazed. “I’m just asking,’’ he said. 

A few years ago, Izquierdo and Ochs wrote an article for Ethos, the journal of the Society of Psychological Anthropology, in which they described Yanira’s conduct during the trip down the river and Ben’s exchange with his dad. “Juxtaposition of these developmental stories begs for an account of responsibility in childhood,” they wrote. 

Why do Matsigenka children “help their families at home more than L.A. children?” And “Why do L.A. adult family members help their children at home more than do Matsigenka?” Though not phrased in exactly such terms, questions like these are being asked—silently, imploringly, despairingly—every single day by parents from Anchorage to Miami. Why, why, why?

Read more http://www.newyorker.com/arts/critics/books/2012/07/02/120702crbo_books_kolbert#ixzz20HL8u4Wk

So what do you guys think, does this researcher have a point? Have you seen this in your own upbringing or the upbringing of others?

Treatment Fights

Here's another great question by a momma in the community. This one is of course VERY common and a struggle that nearly every parent faces. If you don't face it now, more likely than not, you will in the future. Hopefully this helps at least just a little bit.

Thank you ronnie for taken the time to get back to me .Well here it is how did your mother dill with you not taken your medication ,and treatment and when did the crying stop and when did she move on and let you do it on your own ? there is some days i just want to give up and move on with my life ,but he is my life and well your a father you no that your child is your world what are you going to do if they not here ? Hope that doesn't happen but he isn't do the thing he needs to do . And on the idea's i would love to help the next child with cf get it that they need to do they treatments and medication before it to later thats all ,if i could make a different in someone , help them understand that they mother is doing what is best for them .Thank you so much for taken the time to talk with me.

My mom instilled rules and stuck to them at a very early age. I literally had no other choice but to do my treatments. My life really sucked when I refused to do them. After a couple times of my life sucking, I decided that it wasn't worth fighting.

He lives with you right? The only thing you owe him as a mom is food, shelter and clothing. Everything else is a privilege and not a right. If I remember correctly, he plays video games? Well I can assure you that there would have been no video game playing in my mom's house if I didn't do my treatments. If she caught me sneaking them in at night, she would have cut the power cord. 


In fact, I've told a story many times that has to do with just that - treatments and video games. I was feeling brave one day and I refused to do my treatments. I was "too busy" playing video games with my friends. My mom had just the solution. She walked to the kitchen drawer, pulled out a pair of scissors, came into my room, picked up the power cord to my gaming system, and proceeded to cut the cord (or so I thought). Obviously it got my attention and I believed 100% that she was going to do it. From then on, I remember much fewer fights over treatments :)

As a parent, you have to be willing to endure short-term pain, for long-term reward. He'll say all sorts of nasty things to you now that you're trying to put your foot down, but I assure you, deep down, he's knows it's out of love. In the long run, it's much more mean to your child NOT to demand treatments. You need to be the voice of reason - through force or love or both - when we're being unreasonable. Refusing to do something that will in fact improve and extend our lives is totally unreasonable.

My mom let go when I moved out of the house as I was no longer her responsibility. Did she still love me? Of course! But at some point she had to let this little bird fly free and make my own stupid decisions. There was no time more perfect than when I moved out and became "a man". Other parents may feel the time is sooner however and each family needs to decide what works for them and their family.



I can tell you this though, and I mean it from the bottom of my heart - Parents of CFers have ONE job as it relates to CF; You must make us do our treatments come hell or high water.