Tuesday, February 18, 2014

Culture Report & AmazonSmile

I got Olivia's culture report today from cf clinic last Monday: normal flora and heavy growth of staph aureus. Thankfully, nothing worse and because she is asymptomatic she will not be treated for the staph at this time.

I remember in the beginning days of our cf journey, when I first got a culture report that was anything other than normal flora, I was crushed. In fact, our cf nurse practitioner tried to "comfort" me through the phone as she told me that staph was pretty "normal", something they see quite often and that it would be okay. I remember thinking that Olivia was "okay", she didn't show any signs of the staph causing her harm so I questioned why she needed to be on a 3 week course of antibiotic, as back in those days, 4+ years ago, they were treating the staph any time it was cultured. Now, our clinic only treats the findings of the culture report if the patient is symptomatic or if the culture reports something more nasty, i.e. Pseudomonas.

My oh my, how times change, how perspectives change.

Years ago, tears were shed at the report of staph on Olivia's culture, now I rejoice every time she cultures "just staph", no matter if it's low, moderate or heavy growth. Not that any bacteria is great, don't get me wrong there, but always waiting for the other boot to drop, the day she cultures something else like Pseudomonas, well that will be a day more tears are shed, my heart gets crushed, but not near as bad as it would have been 4+ years ago, when I was less armor-clad.

On to other things . . .

Do you shop Amazon? I'm by no means here plugging Amazon for any reason aside from the fact that I love it and if you shop there you can now choose to support a charity, just by making purchases. I love being able to go on-line, pick what I want/need, in the comfort of my home, especially during cold/flu season and have it delivered to my door 2 days later. So easy. Wait, charity you say?

Yep that's right, aside from their awesome customer service, Amazon is also now supporting charity and by charity specifically I mean the Cystic Fibrosis Foundation, but there are tons of others to choose from if that one doesn't float your boat.

Simply go to: http://smile.amazon.com/

*You must log in to smile.amazon.com and when you make purchases there, Amazon donates 0.5% of the price of your eligible purchases to the charity of your choice. Amazon is huge, that 0.5% has the potential to add up quickly!

Smile.amazon looks exactly the same, the only difference is the smile.amazon in the top left corner of your webpage, the selection is the same so it's simple, easy and a bonus for the charity of your choice, a very easy way to give back to charity. Give it a try.

You shop. Amazon gives.
smile.amazon.com

Friday, February 14, 2014

2014 CF Climb - Top Teams


Man oh Man was I super pumped to get this in an email from the CFF office yesterday! Say what?! Currently Team Olivia is sitting as the top fundraising team for the 2014 Climb for a Cure. How cool is that! We are certainly not ever for one moment losing sight of the goal, which is to raise as much money as possible to fund a cure for this disease, never will we ever lose sight of that, but it's fun to be competitive and strive for that extra achievement. Shooting for #1 pushes us that much harder to fundrasie and donate so it is a win-win for everyone as it brings in that much more money for the CFF. While we couldn't be more thrilled with our team total, we are super thankful to every single other team that participates and climbs and brings in much needed funds to help us get closer to finding a cure. I've said it before, we can't do this alone, we need help, we need people to participate, donate, fundraise and spread awareness. We try as hard as we can to do what we can but we are only a small piece of the puzzle and it is for that reason that we thank every single other person and team that supports the CFF, that advocates for it and that fundraises to bring in vital dollars so that one day a cure will be found.

Lindsey of Team Briley and I, both CF mom's, competitive in nature, are both itching to be the Official #1 team for the 2014 Climb for a Cure. As final donations are welcomed and encouraged until the end of the month, to reach our chapter's goal of $200,000 - it's still too close to call who'll come out as the top team. Lindsey and my goal alike are to raise as much  money as we can for the CFF to find a cure for our baby girls so I think a little healthy competitiveness only aids in our fundraising efforts. No matter who is #1, we are just absolutely thrilled and beyond amazed at how much we were able to bring in for the CFF on behalf of Olivia and all those with cf this year. A couple weeks ago, we had raised just a little over $3,000 so to be at over $15,000 closer to a cure now - AMAZING! I cannot say thank you enough to our family, friends, everyone who donated, everyone who climbed, our Polaris family, and the Polaris Foundation for matching funds for our team. We are humbled, blessed and speechless. Never did we think we could pull off raising this much money in one event to find a cure for CF. We thank everyone who supports the CFF, no matter what team you are, we are all one team united, fighting for one goal, so again, thank you to everyone who supports the CFF. Thanks for making 2014 our best year yet!




Monday, February 10, 2014

CF Clinic Appt

Today Olivia had her routine cf clinic visit. Last night as we were getting out her new size medium vest to bring along to our appointment with the respiratory therapist, Olivia started crying, telling me, "I don't want a shot in the throat". I knew immediately what she was referring too. For the past few cf appointments, she remembers quite a bit and is not fond of the throat cultures. Some nurses are great, and others . . . not so much. She's had a few cultures in the past that have sent her into tears and clearly she hasn't forgotten them. After a bit of a diversion she seemed to forget about the "shot in the throat" . . .

until this morning.

Olivia woke up in tears, sobbing as she came out of her bedroom this morning, shaking her head no, again telling me she didn't want the "shot in the throat". I did my best to comfort her and told her that it would be all right, doing my best to stay composed myself. And then it came time to head out the door, I was grabbing our jackets when Olivia came up, wrapped her arms around my legs, looked me in the eyes with big tears streaming down her face saying, "Please mommy no, please mommy no". CF clinic days are hard, for many reasons, and I know they are only going to get more difficult the older she gets but man, I was not prepared for that, "Please mommy, no, tell them I don't want the shot in the throat". If that doesn't break a mom's heart . . . I felt utterly helpless. I could tell her it would be okay, I could tell her I'd be right there beside her, I could tell her that I love her, I gave her hugs and kisses and told her that after visiting the doctor we'd go shopping for a special princess toy. I told her all that but the one thing she begged for, the one thing she asked of me, I couldn't promise her. I couldn't tell her that she would't have to get the throat culture, I wasn't going to lie to her, it was hard. We were both in tears as we walked out of the door. What I wouldn't give to not have to go to CF appointments, to not have to do the throat cultures, to not have to put her through so much because of cf. It was a rough start to a long day.

To think, this reaction from a throat culture, I don't even want to think about the reactions I'll get the further along we go as more tests and procedures are asked of her.

As we arrived at clinic Olivia was determined to keep on her sunglasses, kitty flip-eze hat and the mask we gave her upon entering clinic, clearly she was trying to hide. Emily our nurse was very understanding and told her it was cool.




Faithful brother Landen along for the ride, keeping quiet and entertained with his tablet.


After her vitals it was culture time, I thank the Lord that we had a good nurse today, she was chatting with Olivia and they were laughing, having a good time that she easily convinced her to remove her mask and do the culture and she was in and out before Olivia could get upset. So very grateful for good nurses and so very thankful for nurse Emily being there today, a blessing indeed. So grateful that Olivia is talking about "just a little tickle in my throat" so that perhaps next time on cf appointment day, the fear of the "shot in the throat" will be gone.

Olivia gained a few pounds and hit a growth spurt growing quite a bit in height so her BMI was a bit lower than last time but nothing anyone was concerned with. We met our new dietitian today and she is great, sweet and understanding, definitely no Kathy, but she is going to be wonderful in her own way. Olivia has moved into the child's medium vest now and will also start to practice her huff coughs during her vest treatments. Our goal is to get her to produce a productive cough 6 times throughout a 30 minute treatment. Our respiratory therapist will also be coming up with a plan that we will begin to implement in May to increase Olivia's vest settings (frequency and pressure). Currently her maximum frequency is 13 hertz with a max pressure of 6 psi. Our goal is to eventually get her up to a maximum frequency of 21 hertz with a maximum pressure of 10 psi. We will increase these settings gradually as Olivia tolerates it. We were also encouraged to start practicing for PFT's (pulmonary function tests). Olivia can practice blowing pieces of a cotton ball off the table or out of her hand onto the floor, making a game out of it with big bro Landen. In May at our next cf clinic visit Olivia will have all of her yearly lab work done along with her annual chest x-ray. We may attempt a PFT, but if not at our May visit then for sure in August. So a few changes for now but mostly just to keep on doing what we are doing. So all in all a good appointment. Now we just pray and wait for her culture results and hope they come back clean.
 
I kept my promise of a visit to the toy store so the kids and I headed out this afternoon to pick out a little something for each them, Olivia for doing awesome at clinic today and Landen for being a super awesome and supportive brother at clinic today. Landen was pumped to find a few Despicable Me minions and Olivia is having fun click-clacking around in her new Ariel princess shoes. It's pretty sweet. 


On Saturday we had the Climb for a Cure event. Friday evening Landen told me "I don't want to go to the stair climb, it's boring, all you get to do is sit there, why do we have to go, why is it Team Olivia, why can't it be Team Landen"? My reaction was sadness. If only he could understand that I wish so badly that we didn't have to have a Team Olivia that I am so grateful we don't have to have a Team Landen too. I know he doesn't understand it and all the added attention Olivia receives through appointments, treatment times, encouragement to eat, CF events . . .  he views as added attention and favoritism. I can't fully explain it to a 6 year old so my response was, "Well, the reason we don't have Team Landen is because you don't have CF, your lungs are healthy. The reason we go do the stair climb is to raise money for the CF Foundation so that hopefully someday they find a cure for cf and then Olivia will no longer have to do her treatments, she'll just be able to take a pill or two a day and that's it". Landen thought about it for a moment and then said, "Okay, I do want to go mom, then someday, we can throw out Olivia's vest and nebulizer and smash it since she won't need it anymore". To that I said, "yep, we can smash it, you and me both buddy, you and me both".

You see, I've had that daydream and I can see it so clearly in my head. I can picture the day, for some reason it's dreary and rainy in my dream, weird that it's not sunny because what a glorious day it will be but none-the-less, we are outside on the driveway, laughing in the mist of the drizzle, giddy as can be, celebrating the cure and trashing and smashing all the equipment that Olivia will no longer have to use. Yes, I can envision it very clearly, man what a wonderful day that will be. I've dreamt it, Landen has mentioned it and I'm sure Daddy and Olivia will join in as well, it's a wonderful dream.

Anyway, I digress but the Climb for a Cure was great! We had a wonderful, beyond amazing turnout. We can't wait to see how many team members we offically had for Team Olivia/Polaris and how much money we raised. We have wonderful family and friends that have supported us from day 1 but now I feel like we have another family, our Polaris family. What a wonderful bunch of people Jeff gets to work with everyday, I have to admit I'm a bit jealous that he gets to work with such kindhearted and caring people, but, then there is absolutely nothing better than the two sweet souls I get to "work with" everyday, nothing can beat that. We are blessed and beyond thankful for every single one of you who climbed, donated and continues to support us, thank you. There is so very much more to come regarding the climb event, it's sure to be nothing short of amazing . . . so stay tuned for that!

Team Olivia 2014

Thursday, February 6, 2014

2014 Climb for a Cure - updates

Just 2 days to go until the 2014 Climb for a Cure! Team Olivia is going strong and growing in numbers each day here as we are coming down the home stretch, we are so excited! A very BIG thanks to all who have joined our team and/or made a donation to the CFF in honor of Olivia. Currently we have raised over $6,200 on-line and when you figure in the off-line donations that will be turned in on Saturday and the matching funds that we will get to add in on top of that thanks to the Polaris Foundation, that number will only increase tremendously! We can't wait to see what our total numbers will be for this event!

Emma has raised over $327 through donations she's received from selling her bracelets - thanks to everyone who purchased one and also to Emma for taking the initiative and putting forth the hard work to fundraise and make them. 

Again thanks to all who have donated and to all who are climbing with us, your support means more than we will ever be able to fully express. We are blessed and thankful for everyone who supports us, continues to find the means to do so and all who are cheering Olivia on in her battle against this disease that we have every belief she will someday defeat when the cure for her mutations comes. 

Thank You, Thank You, Thank You!

Details . . . 

2014 Climb for a Cure
IDS Center - Minneapolis, MN
Saturday, February 8, 2014
9:00 am - noon

As a reminder, each climber needs to register (either on-line or upon check-in Saturday morning at the event) and this is a pledge event, all climbers must have a minimum of $50 in donations to climb, $75 will earn you a Climb for a Cure event t-shirt upon arrival at the 50th floor. Cash/check donations can be turned in when you check-in on Saturday morning. 

Our team plans to meet in the Crystal Court at 10:00 am for a group photo and we will then proceed to climb to the 50th floor as a team. Polaris employees are invited to wear their blue Polaris Foundation 
t-shirts from last year if you have one and new Polaris employee climbers to the event can check with Jeff to pick one up. 

Family and friends who are not Polaris employees are invited to wear our new Team Olivia t-shirt or our original blue Team Olivia t-shirt, if you have one.
Our New Team Olivia t-shirt
Following the event, we invite our team and supporters to join us for a celebration at Rock Bottom. 

Thanks again to all who support the mission of the CFF. See you Saturday!