Friday, December 9, 2011

Pics from Mckenna's Photo Shoot!!

You guys have a favorite??

Thursday, December 8, 2011

Thankful Thursday: SwaddleMe & Yard

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 brother. This sounds like a no-brainer, I'm sure. But it's worth mentioning! He called on his way home from work yesterday to chat and we talked about his day, work, etc. Man do I feel so blessed that I have such a great brother and that we have such a great relationship. I mean, we're practically neighbors (they live in our neighborhood) yet we still chat on the phone. He's one of the best guys I know, and I feel blessed to call him my big brother!!

I'm thankful for SwaddleMe swaddling blankets. They make it so easy to swaddle Mckenna. You just flip over the sides and it velcros on one side so it stays all nicely help together.

I'm thankful for a great hubby! Ronnie's been Mr. ChoreMaster the last several weeks. He's been taking care of all of the stuff around the house AND doing chores like planting bushes, decorating for xmas, etc....on top of being really helpful and doing 50% of the work with Mckenna! He's so amazing!!!!

Ronnie's List:

I'm so thankful for our yard. Even though I get super frustrated by some of the work required of it, not that I don't enjoy it, I'm just not good at it yet, I still love looking out to a green, lush yard. When looking for a house, having grass was really important to Mandi and not so important to me. I'm sure glad she stuck to her guns.

I'm so thankful for the children of our friends'. We had some friends over and they brought their little baby girl who is a few months older the Mckenna. It's nice to know people who have kids in the same age range as our little girl. Speaking of that, our neighbor had a baby about two weeks ago. Bonus!!!

I'm thankful for the area that we live in. It's so nice to have access to just about any type of store that you can think of within 2 miles of us. It was one of the main draws for this area, and now that we're living it, I see why. Need to make a quick grocery run? No problem, be back in a jiff! What's that, irrigation parts? They're on the way! Jezzabel needs a cut and color? You get the point :)

So, what are you thankful for today?

Wednesday, December 7, 2011

Genotype and Severity

This comment was actually left on a blog titled Question From Reader: More Severe Genes? from back in June, but I wanted to be sure to share it as a blog so that everyone can get a little more insight into this issue. The comment was left by Jessica, a cyster in the community that is about 150 times smarter than your average bear. In fact, I generally don't understand what in the heck she's talking about (I know, big shock). If you would like to see the original blog, be sure to click the link above. 


There are actually six classes of mutations, and they don't directly range from 1-6 in "severity". Also, they don't indicate severity so much as the manner in which the CFTR protein and/or transport is faulty - a cellular issue that has not been proven to be affected by patient behaviors. There's a lot of great information with more detail and specifics in this article on the CFF website: 

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. 

Tuesday, December 6, 2011

Mckenna is a smiley baby...

...if we are willing to make absurd noises.

Monday, December 5, 2011

Reruns and a Lazy Mom

So not much is new. It seems like when you have a new baby I feel like every day is a rerun of the day before, plus or minus 5 percent. We got up, feed, change, play, sleep; feed, change, play, sleepy...and repeat over and over until bath and bedtime. Mckenna has fallen into a pretty good natural routine. Although she's still up 2-3 times in the night (8pm-7am ish) to eat (about every 3 hours). She teased me a bit with going a 6 hour stretch one night and a 7 hour stretch another night two nights in a row...but that didn't last. But boy did I get my hopes up. I've tried to recreate those days in the hopes of getting those nights, but no can do. That's ok though, she's a growing girl...momma can get up and feed her!

I've handled the no sleep aspect of mommy-hood just as I thought I would; not great. I love my sleep and need a lot of it. So being limited makes me pretty lazy. I don't feel that tired during the days, but I do feel lazy. It takes everything in me to do stuff around the house or make dinner (SORRY RONNIE...I get an F in housewife these days)! Hopefully I'll get more accustomed to the lack of sleep, or she'll start sleeping longer stretches...either way it would be awesome to be a little more productive and not a couch potato during the days.

Speaking of lazy, we bought plants at a nursery yesterday that we are going to plan in the yard, and I'm working to peel myself off the couch in order to participate in the planting! Ronnie has been awesome about getting projects around the house done. So today I'm going to try to join in on his awesomeness! We'll post pictures!

Anywhoo that's about it. Time for Bessy the Cow to go be milked ;-)