Wednesday, February 29, 2012

Culture Results + Lots of Snow = A Good Day!

Despite all the snow we got here over the past day and a half, the mailman still made it out to deliver the mail - thank goodness! Beings Olivia's appt at the CF clinic was over a week ago now I have been anxiously awaiting the results of her sputum culture the past few days. Thankfully, when I ventured out through the shin-high white stuff today to the mailbox the results had arrived. I always become nervous about the culture results and never am at ease until I get them back. Seeing as it had been over a week and I hadn't gotten a call from her doctors at the CF clinic regarding her culture, I figured it was going to be an okay result. Thankfully it was. The report showed that she had light growth of staph which we won't treat at this time because she just got off her Bactrim 2 weeks ago. So even though the staph is still there, it was at a heavy growth prior so the result proves that the antibiotics do lessen the staph which is a relief to know she isn't colonized with it yet. It's always a blessing in this CF world of ours when something works how it should! Her doctors aggressively treat it every time she cultures it otherwise because the longer we can keep the staph at bay the longer we can hopefully delay the onset of Pseudomonas. I'll never forget at Olivia's 1st ever visit to the CF clinic where they mentioned Pseudomonas and I specifically asked about it and when and if it would likely show up and I wasn't told that it won't I was told that most often it does show up in CF patients and it's a 'crapshoot' as to when it will. So I am very thankful that it hasn't reared it's ugly head for her yet.

With all the snow we got Olivia was throwing an absolute fit to go outside with daddy this morning to snowplow. So right after breakfast the kids and I bundled up instead and ventured out into the heavy wet snow. Olivia got pretty frustrated trying to walk in it but she did manage to have fun too. Her and Landen were jumping in the snow, (Landen was pretending to be a humpback whale flopping out of the water, thankfully the snow made for a somewhat soft landing) making snow angels and we attempted to make a snowman. We only got 2 snowballs made before Olivia had a meltdown and was ready to go back inside but it was still fun! Beings it was near 32 degrees outside, it was absolute wonderful weather to be outside playing in the snow this morning. The three of us had fun in the snow making more memories to treasure . . .

Monday, February 20, 2012

Clinic Visit Update

Today Olivia had her next follow-up visit at the CF clinic. After how hard we'd worked over the past 3 months in getting her to eat more and gain weight to try to avoid the g-tube talk for awhile longer, we were a little nervous about how it would go. After all, she did get really sick in January which caused her weight to drop substantially. In December she gained just short of 2 lbs from her weight at the November clinic and was up to 25 lbs 10 oz, this being a huge accomplishment for her as at best she had only been gaining 1 lb every 3 months in the past. Then the kids got terribly ill and her weight dropped down into the 24 lb range so a lot was lost. So given all that, I knew her weight wasn't where it could have been but I did know that we gave it our all.

Spending countless hours with her daily for 3 meals and 3 snacks, I pushed her hard, pleaded with her to eat and bribed her with a treat when all else failed. Most days come the kids' bedtime I was burned out and so sick of food and sitting at the dinner table, it was pure exhausting. So much of my days are spent trying to get her to eat, drink and then eat and drink some more, it still is exhausting and many days frustrating. When I put her on the scale a few days ago she was only at 25 lbs 3 oz, so she didn't regain much of what was lost after her illness. Thus she didn't gain near as much as I would have liked given how hard we fought, so I was a little disappointed and afraid at the same time that maybe diet alone isn't enough to suffice given her malabsorption issues.

But then today game and she stepped on the scale and was up to 25 lbs 13 oz. I still know it would have been better if she hadn't been so sick but so it goes. I do feel however that through diet, perseverance and hard work, she can do it, she is able to gain weight through a high fat, high calorie diet and this is what counts. So, the CF staff were happy, even using words such as "remarkable", "incredible" and patting both Olivia and I on the arm and telling us we did an "amazing job". They were impressed by here weight gain which was 2 lbs over the past 3 months so a huge increase from the past when she would only gain 1/2 - 1 lb in the same period of time. But what impressed them most were the numbers. Today her weight was in the 21st percentile, 3 months ago it was in the 7th percentile. Her weight for height was in the 12th percentile where 3 months ago it was not even on the chart as it was so low. So all of this is an amazing triumph and I'm so, so thankful.

They took a sputum culture so we will find out the results of that next week and are hoping the report is good. Since she just got off her last round of antibiotics 1 week ago we were told even if she continues to culture heavy growth of staph we more than likely will not treat it at this time as to not overuse antibiotics. Her oxygen saturation was 94%, this worried me at first as it's always been 99-100% but after talking with the staff, they said they were not worried as it fluctuates given many variables. It would be concerning if it drops below 90% and stays there so just something they will continue to check of course every 3 months. Otherwise her lungs sounded good and everything else looked good. So for now we need to continue to work hard to get her to keep up her weight gain and try to get nearer that 50th percentile mark for weight to height. With a little hope, lots and lots of hard work, dedication, time and one amazing little girl, we just might be able to do it!

Tuesday, February 14, 2012

My Valentines

With lots of wait and anticipation, it's finally here . . . Valentine's Day! Landen has been looking forward to today for so long. I think for the past 2 weeks he's been asking me every single day if it's Valentine's Day. So I was extremely happy this morning to tell him "Happy Valentine's Day!" when he woke up. He's been patiently awaiting some new sea creatures that Daddy and I promised him for his valentine and he gets to have a party at school as well so it's an extra fun day for him! 

Olivia should be just as happy with her valentine, she absolutely loves the smurfs so we got Olivia her very own Clumsy which I'm sure she'll enjoy. There were days we'd watch parts of the smurf movie 3 times as that was thee one and only thing she wanted to watch while doing her treatments 2-3 times a day. So between her, Landen and myself, I think we can pretty much recite the entire movie! 

So tonight when the kids open their valentines, I hope they are happy. Our house is filled with love always and I know the kids know how much Mommy and Daddy love them every single day and don't need a special day to be reminded. However, a special gift, no matter what the occasion is always fun! So Happy Valentine's Day Landen and Olivia - Mommy and Daddy Love You so much and more than you will ever know! Jeff and I know that we are blessed and have the best valentines of all . . .

 Love to you Landen & Olivia - Happy Valentine's Day!

Tuesday, February 7, 2012

Thank You!

Thank you to all of you whom came out to the Climb for a Cure event on Saturday, February 4, 2012 to help us go vertical for a cure for Cystic Fibrosis. The amount of support we received this year was tremendous! Jeff and I feel very fortunate to have such wonderful people in our lives, willing to put forth the hard work of fundraising and the physical challenge of climbing all 1280 stairs to support our daughter Olivia in her fight against Cystic Fibrosis.

1280 steps - 50 floors to the top

A few months back, Jeff's boss gave him this book titled "212 the extra degree". Knowing I am often very pessimistic in regards to most everything :), I told Jeff that I was going to read it because I could definitely use some more optimism in my life! The premise of the book is:

At 211 degrees, water is hot. 
At 212 degrees it boils. 
And with boiling water, comes steam. 
And steam can power a locomotive.

Going that extra degree has the potential to make a huge impact, "seemingly small things can make a tremendous difference". 

So, I've been trying to apply this 212 degrees theory to many aspects in my life, to be a more positive person. I know that as Olivia grows older and her battles against CF become more challenging, she will need that extra degree to overcome the obstacles she will face. Beings I am a very influential person in her life, I need to be positive and show her how to go the extra degree and put forth the extra effort o overcome whatever challenges come her way. I've found that 212 degrees applies to so many things in ones life. This past weekend, it applied to the climb. One of my favorite quotes from the book is

 "Whether you think you can, or think you can't . . .  you're right" - Henry Ford. 

Each year I become increasingly nervous as the climb approaches, after all, it is a ton of work and each year I am another year older, but none-the-less each year I go out there and do it, because I know I can - I do it for Olivia. This year I completed the climb a minute faster than last year. That was my goal, to be as fast or faster than in 2011. So by putting forth the extra degree of effort, this year I reached the 50th floor in 14 minutes.

We are one of many teams fighting CF. But as one small team, we can and do make a difference. Every dollar we raise through these events to support the CFF on their mission for a cure makes a huge difference in the lives of those with CF. The money we raise is put toward research to save lives, it is not wasted on advertising or promoting the CFF, it's used to fund better treatments and to find a cure. 

This year again, the climb lived up to my anticipation and anxiety going into it. It's always a huge challenge and the indescribable feeling on my lungs that the climb takes can only be experienced by those whom do it or by those who live with CF. That chest pain, lack of oxygen and hard to catch your breath feeling in the lungs when you reach the 50th floor is how CF affects the lungs of those whom live with the disease and how their lungs feel daily battling CF. This feeling I get during the 50 flight climb is nothing compared to what Olivia will face the more the disease progresses and this is what carries me through to the very last step.  My chest pain goes away, as CF progresses however, hers will not.

Thank You to the following Team Olivia Oltmans team members who climbed 1280 stairs with Jeff and I on Saturday: Emily & Austin Jass, Jeff Duscher, Charles & Marian Ommen, Ryan & Amber Johnson, Jeff & Sara Wolf, Clark Davis, Carrington Minadakis, Cole Naymark, Gus Aramayo, Tony Tavegia, Kristin Axel, Kris Lightner, and Alexis Fleming.

2012 Climb for a Cure - Team Olivia Oltmans

And a big thank you to everyone who donated to help us far exceed our goal by raising well over $3000 for the CFF through this event! Thank you also to Jennie & Aleah Fleming, Dianne Fiala, Emma Johnson and Jackson Duscher for coming out to cheer us on during the climb.

Another big Thanks goes out to Jeff Wolf and his recruits. With the support of Jeff's co-workers, we had a much bigger team this year with a lot more support and money raised for the Cystic Fibrosis Foundation.

Last but not least, thank you to my sister, Darci Branby who always watches Landen and Olivia for us so we can participate in this event. Your on-going support, willingness to help out on a minutes notice and constant lending of a shoulder to cry on when I need you the most are so very much appreciated. Words can not express how truly much we appreciate you.


Here is a link to the news coverage regarding the climb by KSTP

and with that . . . the climb comes to an end for another year, now it's off to gearing up for the Great Strides Walk in May!

Friday, February 3, 2012

Climb for a Cure - See you Tomorrow

For all the members of Team Olivia Oltmans, thank you for joining our team for the 2012 Climb for a Cure - we will see you tomorrow morning, Saturday, February 4th at the IDS Center at 10:00 am, to begin our climb up 1280 steps, 50 floors as we raise money for a cure for CF.

To all of our generous family and friends that have donated to support our efforts - THANK YOU, with your generous financial support, we've already raised more than our $2500 goal and there's still more to come!

Inspiration from 2011 Climb for a Cure event:

Last year Team Olivia Oltmans raised $2500 for the Climb for a Cure event, this year we've already surpassed that!

Last year Jeff and I climbed all 1280 steps in around 15 minutes - can we do it again this year or will we be faster or maybe slower?

Stay tuned . . . updates to follow after the event. 

Go Team Olivia Oltmans!

Team Olivia Oltmans from the 2011 Climb for a Cure

Olivia February 2011 - what a difference a year makes!