Heart Explosion

This video makes my heart hurt, explode and then melt....

Thankful Thursday: Smiles & Talks

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 a smiley baby. Mckenna is SUUUUPER smiley. She smiles when you smile at her. She smiles when she's playing by herself. She smiles at you to get you to smile at her. She smiles when you smile at her...even when she's crying. She smiles ALL the time and I LOVE IT. Her gummy little smile is adorable, and my favorite part is that when she smiles big she throws her head back, scrunches her nose sticks her tongue out a bit AND smiles all at the same time!

I'm thankful for more great nights. Mckenna was doing great a couple weeks back at night, and then we had a bad week, and the last few nights she's been doing great again. Two nights ago she went down at 10:15, woke up and ate at 6:30 and then slept until 8:40. Last night she went down at 10:30, ate at 4:30 and was up again at 8:45. I can totally handle that!!! Although, it has now taken me 30 minutes to write this blog because she won't go to sleep tonight, I've re-settled her 3 times now...so we'll see how tonight goes!

I'm thankful for Muddy Buddies. If you don't know what they are, GOOGLE THEM. They're possibly the tastiest treat in all the land :)

Ronnie's List:

I'm thankful for the wonderful weather we've been having. On most afternoons this week, Mandi and I have been going for an afternoon walk or run to crystal blue skies and a temperature right around 70 degrees. I can't believe it's still so nice in January. I'm absolutely loving it right now...just check back with me in August.

I'm thankful for my talking baby. Mckenna is starting to have little conversations with her mommy and daddy and it is one of the cutest things in the world to see. You can tell she really is trying to communicate and the look on her face is priceless. I just need to continue to sharpen my goo-goo gaa-gaa skills.

I'm thankful for 2 great years so far with CysticLife.org. The Website celebrated it's 2nd birthday yesterday, and my oh my does time fly. It felt like just yesterday we were coding that thing and deciding what features were going to go where. Well, 2.5 million hits later, and it still feels like we're doing the same :)

So, what are you thankful for today?

What I Tell Myself...

I think a common myth among my friends and family, and possibly some of you out there, is that I really enjoy working out or exercising. Don't get me wrong, it's not something that I absolutely hate, but it certainly isn't something that I look forward to each day. Generally speaking, I talk myself into getting to the gym or lacing up my shoes to go for a run.

1. You've never regretted going to the gym. Sure, the 10 minutes before I actually get to the gym I go through about every excuse in the book as to why I shouldn't be going, but if I can actually get my butt in the car, it only gets easier. I actually start thinking about what I'm going to do when I get home from the gym even before I pull up in the parking lot, and I've found that can serve as somewhat of a motivation. I find if I can think of at least one thing that I really want to do after my workout, I tend to really push it and get through my workout as soon as possible. This usually means that I am very out of breath while exercising, but for someone who needs to breathe deep, that's a good thing!

2. You always take your deepest breaths while working out. Whether it's from running, doing box jumps or push-ups; I always breathe the deepest during workouts. And as only people with jacked up lungs can understand, man, that feels good! Can anybody out there reading this explain that sensation? You know, the feeling you get when you feel air get to places it hasn't been a while? More often than not, this is the feeling I get when I exercise. So in the regard, exercise is kind of like my drug, because the feeling I get from those deep breaths can't be beat by any narcotic.

3. If you don't push yourself, then shut your mouth. Like that one? One great benefit of having this blog, is that it holds me very accountable. I'll be the first one shouting from the rooftops that exercise is key in our battle with CF. Some people think it's too much and would rather me just shut up about it all, but I believe it in too much to be quite. Not only do I believe in it, but I live it. I've seen the amazing things it can do with lung function, energy and life. If I don't live it out in my daily life, how in the heck can I expect anyone else too?

4. Give 60 minutes for 60 years. Now, does pushing myself each day really guarantee that I'll be able to say that I lived a good 60 years? Of course not. Does it hurt my chances though? No way. It's all about putting myself in the best position to succeed and doing everything that I can to be the very best version of myself. I'm convinced that being faithful with exercise and treatments does just that, so I won't stop until I'm convinced otherwise. By the way, I better make it to at least 60...or Mandi will kill me!!

5. You're not doing this for you. I often hear people say "You've got to want it for you" before embarking on a life of treatments and exercise. Hogwash. The key is to do it, no matter who it's for. Do I love life? Sure. Do I love me? Yup. Do I love Mandi and Mckenna more than me and my little world combined times 1,000,000,000,000? You better believe it. If I'm ever out of energy to get up for the next workout, all I have to do is look my girls in the eye. There is no greater motivating factor on this earth.

So what about you? What do you tell yourself in order to "get up" for a workout?

My compressor: Mobilaire 50 PSI

I get a lot of questions about my compressor, so I thought I would share some answers to those questions...


What type of compressor do you use?


I use a Mobilaire 50psi compressor from Invacare


Where did you get it?


I purchased it from an online durable medical equipment store


Did you need a doctor's prescription?


No


Can you use LC Plus tubing or tubing from other nebulizers?


I only use AeroEclipse tubing, but in general, nebulizer tubing is pretty universal with only a couple of exceptions.


What PSI setting should I use for each drug?  


I've run by all settings with my CF pharmacist, and as I understand it, if the med is dose dependent (ie antibiotic), then the recommended PSI would be 25. The CFF website only lists TOBI at 25 psi as that is the most common inhaled antibiotic on the market. 


Does the setting matter?


Whether it really matters or not could be up for interpretation. Considering that the compressors we're used to have a much lower PSI, one has to wonder whether or not we've been getting really effective treatments this whole time. They obviously are doing something at a lower psi, but is it ideal? Who knows, but it makes you wonder. 


Will it affect the effectiveness of the drug if it is at a "wrong" setting?


I don't think you have to worry to much about setting a drug at the "wrong" setting. Just follow the loose guidelines stated above and I have a feeling that you'll be fine.


Will it really make my treatments go faster??


YES


How much time do your treatments take now?

Albuterol/Atrovent combo (double dose): 10-15 mins run at 30 psi

Hypersal: 15 mins run at 30 psi

Pulmozyme: 7-10 mins run at 30 psi

TOBI: 20 mins run at 25 psi

Is the compressor heavy?

Yes, heavier than any other compressor you're used to.

Is the compressor loud?

See answer above, just insert the word loud

Is this compressor expensive?

I've seen it sell anywhere from $250 to $400.

Would you recommend the Mobilaire to others?

Without a shadow of a doubt!

..........

Do you have any questions that I didn't cover here? Ask them below!

Reality Check!

Another week has come and gone. Somehow life post-Mckenna goes faster. It's like days are shorter now! Mckenna is now 12 weeks old...and I have NO clue where these 12 weeks went - one week and a day and she'll be 3 months old already. CRAZY!

This week was my first week back at work. Back to reality for this momma. Luckily I'm only back at work 20 hours a week. That helps big time. I'm able to get in 2 hours during her morning nap (what's funny is she only takes a long nap (longer than an hour or so) when napping in her swing next to daddy doing his treatments. Ronnie's morning treatments are LONG now because he just continually restarts his vest so we both can get in a long stretch of work. Treatments may be my new favorite things on earth.) Anyway, so I do a 2 hour stretch in the morning, and then another 2 hours or so while Ronnie plays Mr. Mom. All in all it was an easier transition than I thought. But I am glad I'm part-time and that I'm still at home because I think I would die going 8 hours without seeing Mckenna and I still get jealous when I hear them playing and I can tell she's being cute...so I run in to see what she's doing. Maybe one day she'll get boring and I'll be less obsessed?

And come to think of it, Reality is slowly creeping back in in other ways too...one real world first at a time. First, work. Now we're discussing hospital stays. Ronnie won't be going in anytime too too soon, but he's getting closer, as he's been out since September, and he's pretty consistent on how long he can stay out. So as we started talking about a possible tune-up in the next month or so, I started putting together what the reality of a tune-up would be. And it's not pretty. As you may remember, we live in Phoenix and he gets treated in Tucson (2 hours away). I have an office in Tucson that I enjoy working from. We have family in both places. These are all of factors that play into the "where do Mckenna and I stay during a tune-up?" debate. Right now I'm thinking we'll spend 4 days a week at home, and 3 days a week down there - sleeping at his mom's or grandma's. I obviously want to be with him as much as possible. But I also don't want to inconvenience his family (read: keep them up all night with a crying baby) and I don't want to get her all out of wack by sleeping in a different place, etc. We knew that hospital stays would be a bit tricky, but I don't think I really knew just how tricky they'd be until she got here. Needless to say I'm a bit nervous about this new reality, but we'll get it all sorted out once we fumble through our first one. I will say that the biggest blessing is that my office is walking distance from the hospital AND they are ok with me bringing Mckenna to the office with me. Man I love my work - they're awesome! So that will provide some flexibility.

And the last reality that has crept in in the last few weeks is the realization that this is forever. Some of you I'm sure just let out a laugh. I'm sure many of your blurted out a "DUHHH!!". And I know, this statement sounds really dumb. It's so obvious. Yes, a baby is forever. I, of course, knew that. However, I didn't quite know the REALITY of it. What I mean, for example, is I knew that I'd have less sleep with a baby...I didn't grasp that I'd never have the chance to catch up on sleep...because a kid creating sleepless nights is (what feels like) forever. It's not like a little blip where you don't get sleep for a week, and then you can catch up. Or I knew I'd be tethered to her day and night because I'm breastfeeding, but I didn't realize what that looked like in terms of my days. I didn't realize what it means to only have 2 hours away from the house on my own, max..."forever" (I get this isn't forever, but right now, it kinda feels like it! ha!). The permanent-ness (yes, I didn't just say permanent-ness) of having a baby is a no-brainer, but the reality of the permanent-ness didn't quite sink in until the last couple of weeks.

The theme of life the last couple of weeks has been "reality check" for me. It has been both fun and scary to come back to real life after 11 weeks of "baby bliss" on maternity leave. It's been fun and scary to realize what our new life looks like - certainly not bad, just different and a little scary trying to navigate through it all. But man, when I see her smile or feel her little hand on my skin, it makes me so thrilled to be in this reality!!

Have you ever had this happen to you though? Where you know something, but you don't quite grasp it until you're in the thick of things?