Thursday, July 21, 2016


12am: sleep
6:15am: wake up
6:30am: morning routine:
            -vest & albuterol, hypertonic, DNASE treatment = 35 min
            -set up/take down = 10 min 
            -cleaning equipment = 10 min
            -TOBI treatment = 35 min
            -sinus flush & "morning pills" = 15 min
8:15am: dress, breakfast, misc
8:30am: leave the house
9:00am: exercise
11:00am: protein shake and "midday pills"
12pm: shower & get ready for the day
1:00pm: lunch
2:00pm: afternoon vest treatment = 35 min
                setup/take down = 10 min
3:00-5:00pm: errands/pick up RX's/dr. appt/call insurance/organize pills 
(Whatever exists on that days agenda. Not a day goes by that I don't have to do something in regards to my medical care.)
5:00-5:45pm: prep dinner
6:30-7:15pm: eat dinner, "evening meds"
8:00pm: nightly vest treatment = 35 min
            setup/takedown = 10 min
            TOBI treatment = 35 min
            nightly routine & "bedtime meds" = 35 minutes
10:00pm: sleep

Treatments = keep lungs clear and free of infection. 
FOOD = maintaining proper weight - weight is an asset to CFer's, the more weight on the body the more defense to fight against infections. 
Exercise =  strengthen our lung function and build muscle. A strong body gives greater force behind coughs to clear the mucus from our lungs and keep the bacterial infections away.
Pills = help our organs function properly, and overcome the vitamin deficiencies from lack of absorption of food.

Somewhere during our days we find the time to do all the other "normal" stuff: things around the house, make our beds, paint our nails, unload the dishwasher, clean, see friends, work, and in my case - do "mom" things!

But each day, brings another day of life. Another day of breath, and let me tell you - we are grateful. Grateful for each day. CF brings you gratitude, whether you ask for it or not.

Friday, July 8, 2016


The 4th of July was the first holiday H celebrated last year. I was so thrilled, because it is my favorite holiday. There is so much pride in my heart for this country, for those that were brave enough to pioneer the efforts into establishing it, for who we are. Ric know's that when we have a home, I have a solid request for a flag pole to proudly wave the American flag each day on our property. I am honored to be living in a country founded on God, family, freedom and independence. I respect the privilege of being here, one of the greatest gifts I've been given.

image: pixabay 

Our little fam enjoyed the day off of work & school, ran the Sandy City 5K, watched a sand volleyball tournament in Park City & spent the evening doing a firework show with family. 

Notice how I casually put "ran a 5K" in the mix of things and moved on...well, I want to give you some background. My husband and I showed up the race with full intentions of pushing H through the 3 mile course and just enjoying time outside. Running wasn't an option because where my lung function levels are right now. My last PFT (pulmonary function test) showed they were hovering just above 50%. I have a difficult time doing things around the house & going up stairs isn't very fun. When we showed up to the starting line, a cousin offered to watch H so we didn't have to push him. I thought about it for several moments & let him stay. I told Ric I wanted to try and run, I'll do the 2 minute run/walk method to pace myself and just finish. I encouraged him to run at his own pace, or with some of my other athletic, speedy cousins. He insisted on staying with me for obvious reasons that don't need mentioning. I didn't argue too much because I knew this was going to be hard for me, and difficult things are easier with some good eye candy next to you. ;) I made it to the two minute transition to where I would start walking, but felt pretty good and wanted to keep running still. My legs weren't moving fast, people were passing by. At the half way mark, I was really struggling. My lungs were burning, they were coughing. Ric started telling me his childhood stories to distract me, but laughing wasn't helping this situation any! He threw out as many inspiring quotes as he could think of, and ended with, "remember the soldiers that have fought and currently fight for this country. Keep moving your legs & pushing yourself like they have done for us." Boom, he struck the chord that resonated inside me today, with everything I believe. Several, several minutes passed by and then several more, we saw the "finish" line sign. I knew Hawke was going to be at the end and oh boy did I swell with love and tears. He was going to watch us RUN across that finish line.

When we finished I had to take a few minutes to myself, acknowledging my body for what it had just done. I used to be very healthy and in strong lung function. Three miles was almost a daily thing for me. But I've been really struggling since I got pregnant with H and my lungs haven't recovered. This was something I'd wondered if I'd be able to do again. Today it happened. Because of the support of my husband, my son, my Father in Heaven. He knew I needed something like this to give me encouragement and calm my wandering mind. Things are okay, things are going to be okay. 

I couldn't resist posting H's little bum sticking in the air!

Xx, Mand