Thursday, April 17, 2014

Thankful Thursday: Broccoli Slaw & Netflix

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 new class. Yesterday morning I went to the gym before driving to Tucson for work. It wasn’t my usual time, but I figured I’d go and do a class called F.I.T. (which is essentially our Intensity class but in a 30 min version instead of a 45 minute version). Well it was full, so there I was at 5AM with no plan. I decided to do the BodyPump class as an alternative. It was a nice change of pace, and I’m sure my body appreciates it.

I’m thankful for Broccoli Slaw…you know the stuff in the pre made salad section at the store that has shredded broccoli, carrots, and cabbage? I just discovered it. It makes for a delicious alternative to pasta (cook and serve with pasta sauce), or as an alternative to lettuce/spinach/kale for a salad. And an entire bag is only 100 calories (and a whole bag is 2-3 times as much as you’d ever want to eat!)

I’m thankful for a tender-hearted daughter. Mckenna is really compassionate. You can tell by the way she says, “aww,” when she seems a baby/kid crying, or the way she is remorseful when she does something to hurt one of us. To see her sweet heart, remorse, and compassion brings me much joy!

Ronnie's List:

I'm thankful for Netflix. I seem to be taking more advantage of Netflix these days than I have in the past. I used to do my relaxing by reading online or browsing sports sites, but I find myself relaxing now by watching TV series on Netflix. I recently finished the first season of Arrow and have since moved on to the first season of Prison Break. If you have any recommendations, please share!

I'm thankful for Wednesdays. Mandi usually is out of town for work on Wednesdays, so that means it's just Mckenna and I for the day. I love it. We have our special little things that we do and the one-on-one time is something that I really cherish. She's such a blessing.

I'm thankful for grills. We've been grilling a bit lately and its been glorious. Tonight we made grilled shrimp glazed with Thai chili sauce and asparagus. It was absolutely delicious!

Tuesday, April 15, 2014

Questions from a Reader: No Silly Questions!

A couple questions sent my way that may help others out there...


Good night, Ronnie, 
I'm really very impressed by your great work about CF community. It's amazing and very inspiring. I wrote that I'm from Russia and now I live in Portugal. Also I've been in German clinic with my child and read a lot on CF forums in England. I spoke with many doctors and physiotherapists everywhere. But I have to say that your community, your actions, your positivity are great and unique.
I'm a little bit shy to ask some questions on the board as the answers seem to be very easy for most of the community here. But still I have some. And I decided to ask you. I'm sorry.
What is PFT? The level of oxigen in the lungs? That the doctors usually measure with a special clip on the finger?What is FEV?When do your doctors prescribe IV? I've read tons of information about that. But still i'm puzzled as all the cases are very individual and it seems that doctors have different point of view. Is there some "rule" or everything depends on the patient/symptoms?Do the doctors prescribe IV as prophylaxis without bacterias and symptoms?Do your doctors prescribe ANY antibiotics as prophylaxis without bacterias or/and symptoms? 

I understand that the questions are too silly and you might not have had any time to answer. I'm sorry.


First, thank you for your kind words. I'm honored to do anything I'm able to do for the community.

I'll answer your questions to the best of my ability...

PFT explained: http://ihavecfsowhat.blogspot.com/2012/03/awesome-pfts.html

The special clip on the finger measures oxygen saturation explained here: http://www.health.harvard.edu/diagnostic-tests/oxygen-saturation-test.htm

FEV1 is covered in the blog I provided above.

There is no rule when prescribing IVs or oral antibiotics. As you get into adulthood, much of it is a team decision. For me, I request IVs when I can no longer sustain my exercise at level consistent with me being healthy. When I was younger, we would base much of it on how I felt and how my PFTs were.

Yes, there are some doctors who are more proactive and will give antibiotics at the first sign of infections. Some will also prescribe with no sign of infection but other symptoms.

I'm on Azithromycin all of the time, it is an oral antibiotic. I also inhale either Cayston or Gentamicin each month and both are antibiotics.

Hope this helps! Let me know if you have any other questions. 

Monday, April 14, 2014

Mandi Monday: Mckenna's Favorites

Anyone with kids knows that kids' favorite things are forever changing. What Mckenna loves one day she soon forgets over the next days or weeks as new favorites replace old favorites. I thought I'd capture some of Mckenna's favorites are of today:

Food
Mckenna has never been a picky eater. She likes veggies, fruits, you name it. There is no food that she has always refused to eat, but there are phases where she LOVES and craves certain things. Right now she loves hard-boiled eggs, she mainly loves the process of putting salt and pepper on them and then opening the egg white and seeing the yoke inside, but she does like actually eating it too.

Toy
"Spinnies" as she calls them. Her favorite toy right now are these little animals that you stick a stick in and pull it out quickly to make it turn like a top. I can't lie, I kind of love them also.



Movie
Mckenna has never been one to sit for long periods while watching something. She enjoys watching 5-10 minutes of a show or movie, and then she's back up and about like spit on a hot skillet. But lately she has a favorite movie that will hold her attention longer than any other show or movie. Ready for this? Chitty Chitty Bang Bang. Yup, that old movie from the 1960s. She loves it!

Song
Her favorite song right now comes from her favorite movie, Chitty Chitty Bang Bang. The song is "You Two". It's an adorable song the dad in the movie sings to his two kids. The sweetest part about it is every time she sings, "I have you two…" she points to Ronnie and I. The love of this song couldn't come at a better time. In the midst of being a bit sad about our last failed IVF cycle, it warms my heart to sing a song that goes, "Could be, we three get along so famously, 'cause you two have me, and I have You Two too." Something about these lyrics light up my soul and make me feel so blessed to be a part of our trio. I'm not sure if we will always be a trio or if God will bless us with more kids at some point, but if we stay a trio, this song will always remind me what a blessing it is to be a threesome. Here's the song: