Tuesday, May 29, 2012

A Little Relief

This morning Olivia had her quarterly CF doctor visit. As it has been in the past and I'm sure it always will be in the future, as the appointments become more near, my anxiety and stress level shoot right up. There are always just too many unknowns going into each appointment and you never know, despite all the hard work and effort on weight gain and treatments if it will ever be "good enough". Thankfully, today went very well for Olivia and things were "good enough".

We've been working so hard over the past 6 months on getting Olivia to gain weight and she hasn't been gaining like I'd hoped. I knew that at best she had gained only a pound over these past 3 months and I didn't know how that would be accepted by our care team. That was indeed the case today, she had gained 1 lb in the past 3 months but her care team was fine with that. She's following a curve and maintaining it and that was okay for them. She is in the 25th percentile for weight, the 50th percentile for height and her BMI is in the 11th percentile. Their goal for BMI is 50th percentile, but she may never get there and given our family history they are okay with that for now, so that was a huge relief. Of course we will continue to push and try hard to get her the added calories and fats she needs to gain weight and hope that we can keep going up and get nearer to that magical 50th percentile mark. Her lungs sounded clear and all her other vitals were good. She had a sputum culture done and she had her blood drawn which we were equally as nervous about as she hadn't had blood drawn while being awake since she was an infant but she did really, really well. They put some numbing cream on and she only cried for a few seconds and then she was off to pick out her prize from the treasure chest.

So the appointment went well and now it'll be the waiting game which is always very nerve racking to find out the culture results and blood work results. So the added stress of the unknown on those tests will be in the back of my mind until I get her report. I'll be hoping and praying that no icky bacteria's have made home in her lungs as of yet, I'm always waiting for the other boot to drop when we find out she's cultured Pseudomonas, but I pray that we will be in the clear for now, time shall tell.

Monday, May 21, 2012

2012 Great Strides

The weather sure could have been a lot better for our Great Strides walk this year as it was rainy, windy and only in the low 50's for temperatures but for all those who came out to walk with us and support us we made the most of it and I sincerely thank you. Next year Jeff, the kids and I will have to be more prepared with ponchos and big hefty umbrellas. Team Olivia Oltmans had a good turnout this year, we raised a lot of money in honor of Olivia and we couldn't be more proud.

Thanks in large part to the Dreams for Olivia event that brought in a whopping $5,770, the washcloth fundraiser sales between Enspired, Pam and myself that brought in another $907, and our loyal and generous donors who continue to support us, we by far had our biggest and best fundraising year ever! Fundraising is always hard, it's difficult to continue to ask for money in support of my daughter time after time again but we are blessed and humbled by all of you whom continue to find the means to support us, we are forever grateful and I truly believe all of our hard work and dedication in helping to find a cure for Olivia and all those with CF will be the best pay back ever. How amazing it will be to say that I and all of you who donate and support us played a part in finding it.

Since the walk was just yesterday and a few last minute donations are continuing to come in I don't have the official total but I do know the amount we raised as a team for the 2012 Great Strides is in the ballpark of $8,167.00!!! Can you believe it, that is purely awesome, and that was just for this event!

Our 2012 fundraising total for all events is at: $11,832.00!!!  

We've more than doubled the amount we have raised in years past, and this year alone we have raised more than in 2010 & 2011 combined! I am thrilled, I am speechless and I feel like we are that much closer to finding that cure. Now that all of our big fundraising has come to an end for 2012, I feel like I can take a step back and breathe. With just a few more non-fundraising CF events that we participate in for the rest of the year, it'll be nice to put away the fundraising hat until next year and enjoy the tremendous success of our fundraising efforts this year. So to all of you out there who donated and supported Team Olivia Oltmans for 2012 - THANK YOU! We couldn't do this without your continued donations and support.

Many moons ago, I began a "To-Do" list for when a cure is found, it's since been tucked away and mostly pushed to the back of my mind. It's a work in progress but a few of the items I've added to it include a huge 'Cure Found Party' and a trip to anywhere in the world that Olivia chooses. I feel these things are now in reach. 2012 has been amazing with the release of Kalydeco and the on-going trial with promising results so far for DDF508, Olivia's mutation, with Kalydeco & VX-809. I know we will get there and when we do, I will be sending out a notice to all of you, not asking for donations, but rather inviting you to the party of a lifetime, a party of hope, life and many, many tomorrows for Olivia - I can't wait!

Registering for the walk and checking in $6,272 for Team Olivia!

Team Olivia Oltmans 2012 Great Strides May 20th

Our family with the banner we received for raising over $5,000

Jeff, Landen, Olivia, Braelyn & Uncle Mike, trying to stay dry before the walk.

My sisters Darci, Amber and I keeping dry under their big umbrellas.

I used our team banner as my umbrella to stay dry during the 3 mile walk, surprisingly it did an okay job! Like I said, next year, I'll invest in a big umbrella.

Walkers coming down the home-stretch.

The Jass Family, Grandma Pam and cousin Aleah finishing the walk.

Tuesday, May 15, 2012

May, Mother's Day, Graduation - Oh My!

What a whirlwind of a few days we have had here - so much going on! Mother's Day was fabulous. The best part was hearing Landen and Olivia's sweet little voices tell me repeatedly throughout the day "Happy Mother's Day", I absolutely loved it. The kids got me lots of flowers to plant in our flower pots, our flower bed and a few hanging baskets to hang on the porch. Landen, Olivia and I had fun planting them all, and they were quite the helpers with their shovels of dirt! I love spring and being able to spruce up the outside of the house with beautiful flowers . . .


Everyday Olivia seems to develop into more of a "girly girl". Lately she's loved having "pink toes" so we spend lots of time painting her toes pink as it sure wears off fast! On Mother's Day we painted both of our toes pink to match . . .


She's into everything pink these days, always picks out the pink crayon or marker, she goes for the pink candy or snacks, her pink cup, and whenever she's outside she runs around with pink chalk. It's funny how much she loves pink things.

And today, my little man Landen finished his first year of preschool. They had the cutest presentation where all the kids sang songs for the parents and then were presented with their certificate of completion. I laughed and cried from laughing so hard at the cute songs they sang but I must admit, a few of those "laughter tears" were plain old tears. It's sad to think of Landen growing up so fast - I really have no idea where the time goes but many, many days I wish time would stand still . . . at least for awhile.

He looks way too grown up in his cap and gown! Congratulations Landen, we love you and couldn't be more proud!

Landen's 2011-2012 preschool class.

After the ceremony the kids got to play outside for a little bit before school was officially out for the summer. Landen has just recently become re-interested in Dinosaurs and it was cute to see him and cousin Braelyn run over first thing to the Big Dinosaur to have a ride!


Here is a clip of the absolutely hilarious song the kids sang at their presentation, "A-Tooty-Ta". I had no idea the weird things I'd catch Landen practicing at home over the past few weeks actually were from a song . . . 


And finally today my washcloth fundraiser, "Knitting for the Love of Olivia" comes to an end. It was a success and I was happy that we had so much support. THANK YOU to everyone who purchased washcloths through this fundraiser. And a big THANK YOU to Hilary over at Enspired for selling my washcloths, pins and scarves in her store, she did an amazing job displaying the items and generating revenue for our fundraiser. She brought in $387 in sales and between Jeff's mom selling the washcloths at the Windom Hospital (Thank you Pam and the hospital gals for purchasing the washcloths) and the ones I sold through emails/on-line we raised $892.00 all going to the CFF. Since the fundraiser was successful we are going to be doing it again, either later this year, toward Christmas, or next year. 

Thanks to the washcloth fundraiser and the Dreams for Olivia event and all of our generous supporters who have donated, we will have quite a bucket of money to give to the CFF this Sunday for our Great Strides Walk, in honor of Team Olivia Oltmans, I'm super excited! Be sure to check back next week for our totals and photos of the walk!

THANK YOU ALL FOR YOUR SUPPORT.







Saturday, May 12, 2012

I Outrun CF For Olivia

Today I had the pleasure of outrunning CF for Olivia in the 2012 Outrun CF virtual race. The weather today here was absolutely beautiful and it was a perfect day for a run. Shelby and I headed out this morning and made our 1 mile route around the neighborhood and then I joined up with my sister Darci and Olivia and we walked another mile to finish off the race. It felt great to be running for a purpose today and to know that there were many others out there doing the same thing, outrunning CF for themselves or in honor of a loved one. I look forward to making this a yearly event for myself and thank Ronnie & Mandi over at Run Sickboy Run, a blog I follow, for posting the information regarding the race.

I Outrun CF for Olivia.

Olivia, my trusty jogging partner "Sister Ding" and I, getting ready to run.

The back of the awesome Outrun CF 2012 t-shirts.



Olivia & Aunt Darci ready to join me for our last mile of the race.






Wednesday, May 9, 2012

Dreams for Olivia The Results are In!

May 5th, 2012 will forever be one of those days that I'll never forget. It'll be right up there in my mind with some of my fondest memories. All I can say is . . . WOW! It's only been a few days since the event but every time I get a moment and the highlights of the day pop back into my head, my eyes swell up with tears. Don't get me wrong, these are tears of pure and utter joy. May 5th, 2012, was awesome! The event was so successful, so many generous people came out to golf, so many people came out to donate and show their support, not to mention all the wonderful small town businesses that donated to and sponsored the event. The citizens of Windom, MN are unlike any others I've come in contact with during my 31 years and I am so proud to have grown up here and still call this place, home.

The event began with a 79 person golf tournament and after seeing how much fun my husband had while golfing, I wish I knew how to swing a club so I could participate - maybe I'll have to work on that! The silent auction offered so many wonderful things donated by wonderful businesses and individuals and brought in around $1,800! Everyone who came out for the evening event came out with generous hearts as well. The day could not have gone any better, it was amazing. I am without words to express my appreciation for this event, it was wonderful on so many levels. I'll forever be grateful to Hilary Mathis, Tyann Marcy and AJ Smith for pulling this entire event together in such a short amount of time. These 3 individuals are without a doubt some of the most hard working, energetic, caring & generous souls I have ever known. I know in my heart that this 'fabulous trio' is part of the plan for my CF journey. There are so many people to thank that I don't even know where to begin, this event is on a whole new level compared to those we've done over the past 2.5 years. So here is my attempt to thank all of those that I know of whom played a huge part in this event:

THANK YOU:
  • Tyann Marcy, Hilary Mathis & AJ Smith for putting on this event, raising a ton of money and for making dreams come true.
  • The Windom Country Club for hosting the event and allowing the use of the course and club house the entire day & night. 
  • The 79 golfers who donated and came out to participate in the golf tournament. 
  • All the individuals and businesses that donated the use of their golf carts. 
  • The Citizen for running the news articles.
  • Andy Trotter from Ambassador Foods for donating brats/hot dogs for the meal.
  • HyVee for donating many meal items.
  • The gals at the Windom Hospital who work with Pam for donating meal items.
  • All the businesses and individuals that sponsored the event and donated to it.
  • North & South Productions for donating evening entertainment.
  • Quick Print for printing the signs, banner and other items for the event.
  • Everyone who donated items for the Silent Auction & Crystal Fast for organizing it.
  • Everyone who came out to the event to show support.
  • And a huge thanks to everyone who made a donation -  money buys research and research saves life.
And with that, the total amount raised from the event . . . . . . drum roll please . . . . . .

$6,527.86

Isn't that amazing? I can't believe how much money was raised. Like I said, the citizens of Windom, Minnesota are awesome! There are fees that need to be paid but once that is all said and done we should still be able to present the Cystic Fibrosis Foundation with a big fat check on May 20th for well over $5,500!

Best of all, Tyann, Hilary and AJ want to make this a yearly event! I am thrilled with this news and so grateful that I am already looking forward to next year!!


AJ, Tyann & Hilary - the 'Fab Trio' that put on the Dreams for Olivia event. Thank You to the 3 of you for this event - it was an absolute blast and all for the CFF, we were honored and proud to be a part of it!


Tyann & I at the Dreams for Olivia evening event. I love this gal, she is one of the most amazing people I have ever known and I will never be able to express my thanks to her enough for putting this event on, raising a ton of money for the CFF and rekindling my faith & hope that my dream for a cure is out there and we will get it. 


The Silent Auction Table and a few close-ups of some of the items donated to the auction. That huge tv that is front and center, had a $700 value that brought in a $550 donation! Thank you Brady Winters & Advanced Light & Sound for donating that huge ticket item!


Olivia & I next to the lovely banner that was made in honor of  Olivia for the Dreams for Olivia event.


Landen, Olivia & their cousins donating their spare change to the Change Jars.


A few of the business sponsor signs for the event that I actually managed to get photos of.


The golf tournament - look at all the people that turned out to golf and support the CFF in this group photo- absolutely amazing! 

The golf tournament getting underway and my good friends Anissa & Christy who came out to show their support.


Hilary & I at her lovely shop Enspired (I love that store and could have spent so much money in there). She is a gift from God and I love her - this whole event started with Hilary watching my video, sharing it with others and taking action to raise money. 

Hilary's awesome display of my washcloths, flower hair clip/pins & scarves. She is so talented! She's sold over $380 worth of my stuff, (additional to the $6527.86) all going to the CFF!


Olivia next to all of our items for sale to benefit the CFF in Hilary's store, Enspired. 


This lovely basket of goodies was given to us by Hilary, AJ and Tyann. The kids loved it! The beautifully crafted blankets were donated by Betsy Herding, they are the softest things ever - my kids love them. This basket was full of fun things to keep the kids entertained, they are thrilled with all their new treasures, especially the dolphin and smurfs - which are right up there at the top of Landen and Olivia's most loved things list!

What a day! It was amazing and will forever be one of my fondest memories regarding CF. CF is hard day in and day out there is no doubt about that. There are always ups and downs. Thankfully, we have been blessed with so many more ups than downs. This event was wonderful, all to honor Olivia, all those with CF and to benefit the CFF. It is the most fun event I've attended so far to raise money for the CFF. We are truly blessed, and after Saturday my faith and hope in the possibility of a cure is once again restored. Thank You again to everyone who came out to the event and to everyone who had a piece in putting it on. We are forever grateful to all of you who take action to raise money and donate to the CFF to save lives and to help us fine a cure for our daughter. Your generosity is forever appreciated. Thank you for joining in my fight for a cure and for dreaming with me to get there.














Thursday, May 3, 2012

Cystic Fibrosis Awareness Month

May is Cystic Fibrosis Awareness Month and is turning into a very busy CF month for our family. This weekend we have the "Dreams for Olivia" golf fundraiser and night event to raise money for the CFF. This event will be our biggest fundraising event to date and I'm truly looking forward to it. For anyone and everyone in the Windom, MN area, come on out Saturday for a day and evening full of fun to support the CFF in honor of Team Olivia. In speaking with Tyann last night, the silent auction for sure will not disappoint - there are going to be amazing items there and a variety for all. This is a new event for us this year and one we hope to continue yearly to support the CFF.

Next Saturday, May 12th marks another new CF event that I'm participating in. All over the country people are choosing to "Outrun CF" in a virtual race where on your own time and at your own pace, you make a donation and you run. I found out about this through another wonderful blog that I follow, Run, Sickboy, Run so I signed up to do it. So next Saturday, I'm choosing to "Outrun CF for Olivia". So you can be sure to find me and my trusty jogging partner "Sister Ding" running around the neighborhood to outrun CF for Olivia and all those with CF.

To finish off, on May 20th we will be walking in the Great Strides walk in St. Paul, MN. The great strides walk is the biggest national CF fundraiser event and we are thrilled to be a part of it again this year at a new walk site. If you haven't yet joined our team or would like to make a donation to support the CFF in honor of Olivia, follow the Great Strides link on the side of my blog.

Phew! Starting Saturday it's going to be a busy month here, on top of the normal craziness called life that we already have but I wouldn't have it any other way. For each and every one of the CF events, I am honored. Honored to be a part of them to raise money for the CFF at a time where money is so crucial for them to keep going on their quest for a cure. 2012 has been monumental for the CFF with their release of Kalydeco and we need to keep going. The cure is lurking, it's out there, it's up to me, it's up to you, it's up to us to keep the research funded to deliver it. I know we will get there, it will take time, it will take money but I have hope, faith and trust, that one day, my daughter will be cured - I can't wait.

And lastly, I've been surrounded by news and stories about the importance of being an organ donor. From day one of Olivia's diagnosis, we were told about the possibility and likelihood of transplant for CF patients later on down the road. For some time, I have been an organ donor, it's as easy as checking that box on your driver's license application or you can sign up on-line (Donate Life) but it's something we all can do, if you so choose. I invite anyone interested to learn more about it and if you so choose, make the choice to be an organ donor. With each CF event I participate in to raise money for the CFF I am choosing to save lives by funding research to get a cure. I want and will do everything in my power to continue to do so. I would at any one moment give up my life to save my daughter if it came to that and I know I'm not alone. There are so many others out there that would sacrifice themselves for the ones they love. However, it doesn't work that way, I can't one day give my life up to save hers, but I can and I am an organ donor. There are a few other blogs I follow about organ donation and CF. Feel free to visit these blogs that I have listed below to learn more about CF and what it's like at the end stages, learn about the importance of organ donation and if you feel so deeply about it as I do and aren't already, take the steps to become an organ donor today. I'm proud to raise money for the CFF and I'm proud to be an organ donor, these are small steps that I can take in my personal journey to save lives.

Follow Nikki's CF story as she awaits a set of new lungs: Nikki's New Lungs

Read Kirstie's CF story about her life on the transplant list and life after receiving new lungs: 2nd chance @ life? (Kirstie's story was featured on TLC a few months ago)

Learn about Organ Donation: Donate Life