Friday, September 9, 2011
Hospital Room Virtual Tour
Thursday, September 8, 2011
Thankful Thursday - Freshly Baked Cookies & PFTs
Wednesday, September 7, 2011
Update from the Hole: Day 7
Tuesday, September 6, 2011
Peanut Took Labor Day Seriously!!
Friday, September 2, 2011
Thankful Thursday on Friday - PFTs & Wifey
Thursday, September 1, 2011
Update from the Hole: Day 2
Wednesday, August 31, 2011
Update from the Hole: Day 1
Tuesday, August 30, 2011
The Non-Hospital Update!!
Monday, August 29, 2011
Nesting: Playroom Addition
Saturday, August 27, 2011
Images of Our Little Peanut
Friday, August 26, 2011
We get to "see" Peanut today!!
Thursday, August 25, 2011
Thankful Thursday - Pregnant Neighbors & Master's
Wednesday, August 24, 2011
Germs at Work & The Best Compressor in the World!!
I have a question for you...I totally respect your opinion and would love it if i could ask for itI have a little girl with CF I am looking at accepting a position in the ER...I will be going into rooms and registering them into the system. Do you think this would be putting her health at risk? I have posed this question to everyone at the hospital and they are of the opinion if I am taking the necessary precautions, I should be ok. The reason I am looking into this is because the hours work so that I can still stay home with her during the day. AAAAHHH....help???
This was recently said on CL and it relates to your question...
"I work on a trauma floor and we have tons of sick people there. to avoid me bringing it home to my little cyster and fibro i avoid all contact with them right when i walk through the door and my shoes never see the inside of my house."
Could always do that if you'd like to be extra cautious.
Also, I worked for a couple of years in a homeless shelter and there was more sickness in that place than you could shake a stick at. My doctors gave me the same advice that I started with - Do your best to protect yourself and use common sense.
Hope that helps!!
I saw on an old thread on CL that you use the Mobilaire 50 psi compressor. A few other friends either have it or are using it. So I am also polling them. What are your favs and not so favs about it? We will also have the VIOS or even the old Pro Neb Ultra for travel, but day to day is the Mobilaire worth the investment? Our clinic is supportive in writing the script since we have gone through so many PARI machines...
I travel with mine as well since I travel so often and it really affords me the opportunity to fill my travel days with stuff that I need to get done because I don't have to be at the hotel for hours on end doing treatments. It is a bit heavy to lug around, but for me it's worth it.
If you're looking for a compressor for day-to-day home use, honestly, this purchase is a no-brainer!! I couldn't encourage you enough to get the Mobilaire.
Favs - It's fast, effective and durable
Not favs - Wish it were lighter and less bulky for travel, but that would probably cut down on the power it has.
Tuesday, August 23, 2011
Wedding and Power of Two Movie
What a great weekend (as you can tell by Mandi Monday being posted on Tuesday)!
As Ronnie posted, we were in California for a good friend’s wedding. The wedding was in one of my favorite places in the country, Newport Beach. I absolutely love everything about that place; the weather, the quant strip of shops and restaurants, the houses, the beach…I could go on forever. I could live anywhere in the country and bring our families with us, I would move us all to Newport Beach. The only catch is that we’d all need to be multi-millionaires to buy homes there!
It was awesome visiting my favorite town, and for such a great event. Kirra and Tyler’s wedding weekend was fantastic. The rehearsal dinner was great, the wedding was wonderful, and the brunch on Sunday was amazing. It was great to get to spend time with them and share such a joyous event in their lives.
One last minute addition to our trip was yesterday (we extended our trip by a day). Last week we received an email from the folks behind The Power of Two movie about premiers being held in LA this weekend. Because CysticLife is a Community Partner of The Power of Two and because Ronnie and I are HUGE fans of all that Ana and Isa do for the CF community, we decided that we had to go to one of the premier showings of the documentary.
Holy smokes - it was amazing. Ana and Isa are such huge inspirations to Ronnie and me (and the whole CF community). I was so excited to watch a film about their great accomplishments and life stories. I was not disappointed. I recommend this film to everyone in the CF community, transplant community, and really, anyone who likes an inspiring story about two great people. I’m eagerly awaiting its release onto DVD so I can purchase a copy to watch anytime! I can’t rave enough about these two women and I can’t say enough about what they have created with this documentary. There are additional showings, and I highly recommend going if you can. If you can’t, wait eagerly for a chance to purchase a DVD!!
Another awesome coincidence is that because we were headed to the premier, we were able meet with a dear friend and business colleague who lives in Santa Monica. She has been out on maternity leave and we’ve missed her in all of our work dealings. So getting a chance to meet up with her for a couple of hours and see her handsome little boy (I can only hope Peanut will be ½ as cute) was incredible.
All in all it was an awesome vacation, mixed with a little business!
Saturday, August 20, 2011
Congrats Kirra & Tyler!!!!

Friday, August 19, 2011
Prayer Squad Needed
Thursday, August 18, 2011
Thankful Thursday - Old Teams & Bro-in-Laws
Wednesday, August 17, 2011
Rondi's Recipes: Nacho Cheese Chicken Chowder
What we'd change:
Here's our overall rating (with 1 being the worst meal we've ever had and 10 being the best):
Mandi's Rating: 9.0
Ronnie's Rating: 8.5
Again, if you guys have any suggestions on how this is laid out or what you guys would like to see answered/done differently, please let us know :)
Tuesday, August 16, 2011
Hemoptysis Questions
Monday, August 15, 2011
Murderers, Nesting and Late Night Gelato
This weekend Ronnie was in Kansas City, MO speaking at a CF Education Day, so I was on my own on Friday and Saturday. I HATE staying home alone. I am sure someone will pick that night to rob us or come and murder me. In fact, I have trouble sleeping and spend half the night laying awake in bed watching for shadows out my bedroom window. I'm not sure where this fear has come from, and in the light of day I realize it is completely irrational. However, as soon as the darkness of night sets in, I am sure that a serial murderer is around every corner. This weekend was no different. Luckily, I was only home along Friday night, but I woke up at 4:30AM from a dream about someone breaking into our house, and didn't fall back asleep until it got light out around 6AM. It is so very silly, but I just can't help it. I try everything to make the fear go away. I lock and double check all the doors, I sleep with both phones in my bed incase I need to call 911, I have our incredibly scary dog (who literally would eat the face off of an attacker) sleep next to me, I pray that God will take away this silly fear...you name it, I do it. Maybe next time I will be more brave...or maybe I'll just go sleep at my brother and sister-in-law's!







