Friday, May 18, 2012

Love Watching This

I can sit and watch Mckenna play by herself for hours. It's just so heartwarming to see her little brain working and seeing how she decides what toys to play with. I'm not sure what to expect, but I'm thinking she's pretty content by herself as a 7 month old :)

Thursday, May 17, 2012

Thankful Thursday: Crawling & Trust

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 family. We've been able to spend a TON of time with family these last couple of weeks and it's been AWESOME!

I'm thankful for new developments. Mckenna has started crawling and man, I'm so proud of her. She's not to the point where it's a ton of extra chasing because she's only crawling when coerced. But I am so proud of her new development and so thankful that I get to watch her grow.

I'm thankful for sunscreen. I got a burn the other day, and it reminded me why you're supposed to where sunscreen. I'm thankful that it exists.

Ronnie's List:

I'm thankful for for the trust that Mckenna shows. We got Mckenna into a pool for the first time ever last week, and she is already showing an incredible amount of comfort and easiness. She's also jumping, from a seated position, into my arms from the edge of the pool. It's so awesome for a little life to have so much trust in you.

I'm thankful for our camera. Mandi got us a cool camera for my birthday and Christmas last year, and we've been taking full advantage of it lately. We're actually not huge picture people naturally, but having a nice camera with a bunch of cool options always encourages us to take more shots :)

I'm thankful for Instagram. I finally got around to downloading the app and I'm so very thankful that I did. Basically, it's a photo filter service for the iPhone that allows you to spice up your pics a bit. There is also a hug community of other picture takers that I haven't looked into much yet. If you follow me on Facebook, you've seen many of the photos I've shot with Instagram!! 

So, what are you thankful for today?

Monday, May 14, 2012

Enzymes: It's All About the Poop

Yesterday I spoke about my semi-recent switch to a different enzyme and the kind of impact it's had on my life. That however wasn't the overall point of the blog - the point that I was making is this: Don't settle for status quo. We all get tricked into thinking that CF is some type of non-negotiable disease in which we have no control over and whatever way we feel, that's just going to be the way that it is. I in no way was just talking about the community, but talking about myself, who battled that mindset for much of my life. I accepted the "consequence" of having CF for what it was and figured that I'd just have to put up with all of the peripheral damage. As it related to yesterday's blog, I was specifically speaking about feeling bloated, stomach pains and crazy poops. A small change in medicine helped open my eyes even more and made me realize that I no longer had to settle. Anyway, that synopsis was long enough, but if you didn't get the chance to see yesterday's blog, click here to read it.

What I really wanted to talk about today was different strategies when it comes to taking our enzymes. A get a lot of questions thrown my way (keep em coming!), but a good portion of them, have to do with poop and enzymes. Some of the common questions are:

How do I know if my child's enzymes are working?
Can I adjust the enzyme dose?
What can I do if they refuse to take their enzymes?

I'm not going to get into that last question, but if you're interested in hearing some answers about that issue, I would encourage you to go to and check out the different strategies that parents have used. I do however want to talk about whether enzymes are working or not and if we can adjust or dose, or more importantly, how we take our enzymes. Remember, I am simply revealing my own experiences and relying on what has worked for me. Before changing anything in your own or your child's healthcare plan, please consult your doctor.

So, how do I know if my enzymes are working? There is quite a few ways to know, and I'm sure I'll miss some, but here are some things that come to mind.

- My poop sinks
- My poop is formed
- I'm not terribly bloated after eating

- My stomach doesn't hurt after a meal
- I'm not incredibly gassy
- No grease in my poop

Like I said, that probably doesn't cover everything, but that's a good start. Conversely, I know that my enzymes aren't working if the opposite of those things are true. For me, becoming painfully bloated after a meal and my poop floating and not being formed are the most tell tale signs. I must point out, that this does still happen even when on the correct enzyme and on a proper dose. Not all things going on in the body can be explained and I'll certainly ever expect to be 10 for 10 in the poop department, for example. We must remember that Joe Blow walking down the street doesn't always have perfect poops either. It happens to everyone, CF or not. It especially happens to everyone who eats fast food and pizza, trust me, you can ask my brothers (right guys?). We can only do what we can do in some cases. Take our pills faithfully before we eat and then hope for the best. I'd guess that for most of us, they do their job a majority of the time.

I have employed a couple of different strategies throughout the years when it comes to taking my enzymes or being on the proper dose. First, I make sure to relay everything that's going on with my CF team and they'll usually be the ones to recommend an actual dosage change if the deem it necessary. Some of the obvious dosage changes I make myself will be based on the meal that I am eating. If the meal is full of fat, grease or dairy, I will always take my full dose of Zenpep, which for me, is 8 with a meal. If I'm going to be eating a more balanced meal with equal amounts of fat, protein, etc, I will usually bump it down to 6-7. If, like today, I'm eating raw vegetables with some hummus, I may only take 4-5. The whole thing of it is trial and error. There is no "magic dose" or a certain number of units that will work for everybody. Over the years, I've just paid attention to how I feel after eating certain meals, and then adjust accordingly.

Last thing I'll throw out there...I've also found it helpful to play around with how I take my pills. For some brands of enzymes I found it helpful if I took them all 10 minutes before I was going to eat. For some brands it was best 5 minutes before I ate, as well as immediately before I ate. Another strategy that worked wonderfully for me was spacing my enzymes out throughout the meal (This worked best with my last brand). I was talking 9 pills with every meal and would start the meal with 3 of them. Then, 1/3 of the way through I would take the next 3 and 2/3 of the way through, the last three. As I said, it worked very well. It was suggested to me by a dietician after I was having some stomach issues and they didn't want to increase my dose.

Bottom line: Pay attention to your child's (or your own) poop, symptoms, etc and adjust accordingly. Our body was beautifully and wonderfully created and 9 out of 10 times will tell you exactly what's going on. It's just up to us to listen.

Let me stress again, consult your doctor before any adjustments to your or your child's PEP therapy. I'm not a doctor, if I were, we'd all be screwed.