Before I get to the house cleaning part of this blog, a little bit of an exercise update for ya...Wednesday, June 29, 2011
Workout Wednesday: House Cleaning
Before I get to the house cleaning part of this blog, a little bit of an exercise update for ya...Tuesday, June 28, 2011
Top Ten Great Things About This Weekend
Monday, June 27, 2011
Best Feeling Ever...
"What is?" You're probably thinking after reading the title. But unfortunately you will have to bare with me a bit before I get to that...Friday, June 24, 2011
Thursday, June 23, 2011
Thankful Thursday - DWill & DD
Wednesday, June 22, 2011
Ever try a spin class?
I wanted to give you guys an update on how my workouts are going since I haven't been posting as much exercise related stuff lately. As many of you know, I hurt my foot a while back during a run and have been trying to rehab it now for the past eight weeks or so. My foot is definitely getting better, I'm just not to the point of really pushing it on a daily basis yet. I've backed off of my morning walks to try to rest my foot and I've only gone on two runs in this eight week period. that certainly doesn't mean that I've been slacking off on working out however. I'm still doing something active every single day whether it's riding a bike outside, an exercise bike in the gym, the elliptical machine, lifting weights or walking on a treadmill - I'm still keeping myself very active. Which leads me to the other point of this blog - have you guys ever tried a spin class?Tuesday, June 21, 2011
Genotype vs. Gene Mutation
Taking care of yourself - treatments, exercise, nutrition, etc, are all still extremely important to put yourself in the best position for optimum health, but none currently available have any direct impact on the cellular-level mutation problem itself - that's exactly where these new treatments come in and why they're so exciting!
Lastly, a quick but important distinction: DeltaF508 is the most commonly identified mutation, but *double* DeltaF508 is a genotype, *not* a mutation. Everyone has two mutations, which are often not the same; the genotype identifies the pair, and their interaction with one another (which is arguably equally if not more important than the mutations individually). DF508 is the most *commonly identified*mutation, but DDF508 is not necessarily the most common *genotype*, and if it is, it's by a slim margin - it's not like there is a vast majority of double deltas and other genotypes are sort of "odd type out" in CF statistics.
Also, while that DF508 is the most commonly *identified* mutation , many scientists argue that may just as well be because it was the *first* identified mutation, and as more mutations are identified AND more individuals learn their genotype, that will likely change, as it doesn't make sense that DF508 would be the most common from an evolutionary biology standpoint.
The most important reason to know your (or your child's) genotype is because the new wave of treatments are all going to be rather class specific, if not mutation specific - knowing BOTH of your mutations lets you know whether new trials apply to you (so you can participate and get them to market quicker!) and if they don't, whether the science might be in the same wheelhouse and therefore might eventually - or at least more quickly than a treatment targeting a mutation in a completely different class.
Hope that helps clarify some things!
Monday, June 20, 2011
When Momma's Happy...

Sunday, June 19, 2011
Friday, June 17, 2011
Apartment Hunting
Thursday, June 16, 2011
Thankful Thursday - Water & The Garbage Man
Wednesday, June 15, 2011
That Little Piece of Regret
Earlier on today while walking towards the fridge to get my second dose of Cayston I yelled out to Mandi “well I guess I might as well do another treatment!”. Then, for some strange reason, I thought to myself, "Man, will I be doing treatments for 2 to 3 hours a day for the rest of my life?". What came next was actually kind of strange and to be honest, kind of surprised me. Immediately after the statement I had just internally made, I thought to myself, “I sure wish I would have started doing more treatments earlier on in life”. Tuesday, June 14, 2011
How Are You So Positive All of the Time?
Ronnie, I am amazed at your attitude and I admit, a little curious. What's your secret? What drives you to be so positive? I feel that somehow maybe I failed my son. I set out 20 years ago when he was diagnosed to have him be the same way in life but he has struggled with anger more than I would like to admit. Myself too, as a result of watching him struggle. He's getting better though. I'd love to hear your thoughts.

Monday, June 13, 2011
Half-way There
Friday, June 10, 2011
Challenge from Chronic Admissions!
Nancy over at Chronic Admissions posted an awesome blog with a mind blowing stat and great challenge that I wanted to share.
Make sure to stop by her blog and tell her whether or not your up for the challenge:
It's Friday! and it's 76 and sunny. It's the perfect day to open all of the windows and let in the fresh spring air... especially after all of the humidity we've been having here in the Northeast. Even better would be to make this day an outdoor day. Take the kids outside for a nice game of tag or wiffleball or for a long bike ride. Not only will it bring you closer as a family (and tucker those kids right out), but it can save your life.
The American College of Cardiology released the results of a study finding that sitting for 6 hours or more a day is as deadly as smoking. Yup, smoking! So for all of you sitting at your desk reading this, GET UP. Women are 37% more likely to die sooner compared to those who sit for 3 hours or less a day. Men have a 17% greater risk of early death. You may think that this is completely out of your power if you have to work. But if you take breaks to stretch or if you do some of your work while walking on a treadmill, you will be making improvements. Sitting too much can cause heart disease, obesity, diabetes, cancer, and early death.
I don't know about you, but I'd like to avoid each of those things. I already have a few issues with my heart, but like my cardiologist said, one of my problems disappeared when I was picking up the pace on the treadmill. So, I ask you again - especially you CF parents or those of you with CF - join me on my new mission to improve my lungs, my heart and my overall health. I'm doing it for me and my girls. What about you?
It's a Girl!!! (and 3D-4D pics are crazy awesome)
Thursday, June 9, 2011
Thankful Thursday - Snorkeling and My Rock
Wednesday, June 8, 2011
Thrown for a Loop
Monday, June 6, 2011
Boy or Girl? Take the Poll!
Thursday, June 2, 2011
Thankful Thursday - Movement & Happy Hour
Wednesday, June 1, 2011
Question from Reader: More Severe Genes?
Can I ask ? Is there certain Cf genes that are more sever than others or does it make any difference ? How old were u when ur parents told u that u had Cf I don't know when I should approach that with eoin he is 6. Also congrats on your 13 wk scan all looks great did u guys do ivf with pgd ?
You know they do classify genes into one of five classes. The classes are often just a representation of how well our cell is functioning. For instance, class 1 has little to no cell function where class 5 has very close to normal cell function. My mutation DDF508 (the most common mutation in the CF community) is considered a class 2. It's important to remember that despite our “class” of gene we have a lot of control in how CF is presented in our lives. I've met people with my mutation that were very sick early on and I've met people with my mutation that are in their 60s. So to make a long story short, it's not about what gene mutation we have, it's about what we do to take care of ourselves.
I don't know how old I was when my mom first discussed CF with me, but I know I was very young. She presented it like this: some people have brown hair, some people wear glasses, some people are in wheelchairs, some people can jump high, and some people have cystic fibrosis. She made it very clear that I was a normal kid who happened to have CF and I was treated as such.
Tuesday, May 31, 2011
My Belly's Shrinking?
We are 18 weeks today! So little peanut is about the length of a bell pepper. We haven’t posted belly shots in a while, so here they are. For some reason my belly actually looks like it’s shrinking in some of the photos, but I’ll just blame the photographer (cough, cough, RONNIE). I swear, it’s getting bigger and my jeans are finally getting pretty uncomfortable…but the rubber band trick is still working – except for the fact I have a major muffin top all the way around because they’re just simply too tight. The muffin top could also have something to do with the 9 pounds I've gained to date (no idea where my weight gain is supposed to be at this point, I'm just trying to hit my goal of keeping it to 10lbs at 20 weeks...we'll see). I think it’s getting to be time for some maternity pants, but I’m cheap, so I’m putting it off!








