Monday, November 19, 2012

Knitting for the Love of Olivia - CF Fundraiser


Back for another year and just in time for holiday shopping is the Knitting for the Love of Olivia CFF fundraiser. The timing is impeccable - purchase your holiday gifts while supporting the Cystic Fibrosis Foundation with a year end donation.

This year we have many different hand knit scarves, flower clips and washcloths for sale. While I've spent countless hours knitting the scarves and clips, my sister Darci has graciously devoted much of her time and talent to tackling all the washcloths. Last year this fundraiser was a success and we are hoping for another successful go of it.

To view and purchase items for the fundraiser, CLICK HERE or click on the Knitting for the Love of Olivia - CF Fundraiser tab at the top of the blog. 

Please feel free to share this fundraiser with anyone you think may be interested in the items for sale. We are hoping that the majority of the items sell and sell very quickly!

Thank You all for your support. 

Wednesday, November 14, 2012

Rant

You know that saying that goes something like getting kicked when you're down . . . I wonder if there is a companion about getting kicked when you are up - there should be. In life, at least mine, it seems that is the case more often than not, you get good news or things are going good and then WHAM, you get kicked back down.

That's how I felt today - this is my rant, you've been warned.

Yesterday was a pretty darn good day. Olivia's CF appointment went awesome compared to so many others, she's doing well. Her lungs sound good and clear, she's growing - albeit at a slow pace but we are getting there. I have hope in the periactin, that it will do wonderful things for her and I have, do and will continue to bust my butt every single day, fighting the food fight with her to get her to eat as much as possible. So yes, things are on the up here.

CF is a number game, I hate it. I hate all the numbers for every single test, function and most certainly the one about life expectancy. Yesterday at clinic our physician told us the oldest person with CF at the U of M CF center is 64 years old - hope. Saturday, I attended the CF conference and heard that the oldest person living with CF is 82 or 84, I can't remember exactly but that is definitely something to cheer for. Those are numbers I definitely don't mind hearing about but again, they are numbers, they stay ingrained in my mind and provide all kinds of questions, hopes and dreams. For whatever reason, I never forget numbers.

The number I absolutely hate in relation to CF is 37.4, that was the life expectancy we were told about upon Olivia's diagnosis. Today I read the new number for life expectancy is 36.8, it's decreased by almost a year. To me and in this CF life of ours, 1 year is a very big deal and nothing to take lightly. The decrease was sugar coated because of the statistical data and fluctuations and other things and stated that the most important thing is that the median life expectancy is still on the rise, which I definitely agree with. I don't want to be a downer, I hate to think negatively and act accordingly but that's just how life goes sometimes.

The biggest eye opener was when I read in black and white what exactly the CF median life expectancy means; half of the people with CF are expected to live beyond the median predicted survival age, and half are expected to live less than the median predicted survival age. That sucks, I seriously hate numbers. I'm pretty sure that deep down I knew that's what it meant but once I was told 37.4 in the beginning of this journey, I just assumed Olivia would get to be that age and hoped she would live much longer than that. I never ever thought that she might live less than that stupid number. Reading that was a blow to the gut.

I know that things with CF are hopeful, it is a time of hope and promising new things. I read it, I hear it, I know it and I partially believe it. I don't think I'll fully believe in "the cure" until it's here because you just never know but I do have hope that we will get there in Olivia's lifetime. I have hope that they are close and I have hope that Olivia will live a very long life, that is why I keep on fighting. That's what you do when you get kicked when you are down (or up) you pick yourself back up and keep going. No one knows when there time is up, CF or not, that is why I believe that this is just a stopping point on our journey to forever. I know this and I believe it but it doesn't make it any easier for me. I'm selfish, I'm human, I want my daughter to live a long life not inflicted by this disease. I don't want to constantly be thinking of numbers, I don't want to think that she might be in the half to not make it to that stupid median life expectancy number. I don't want CF to do her in. I don't want to fall into that category of "they did everything right to fight CF but it still wasn't good enough".

So, (deep breath in) I will sweep this rant under the rug, lift up my spirits and keep going, it's what I do, what I must do to keep going and keep fighting. I can't let the "what ifs" and unknowns eat me away because we just don't know, no one does. There are no answers, there are no guarantees, we aren't promised a tomorrow. So I'll keep fighting, keep doing everything humanly possible to keep Olivia here for as long as we can and work every single day to beat this disease.

At the conference it was very hopeful to hear the medical professionals talk about promising new things coming down the pipeline in a few more years. It was also awesome and bittersweet, to hear these teenagers and young adults talk about their lives, their experiences with CF and still see that despite the constant challenges they have fought because of CF that they are some of the most wonderful, strong and inspiring people ever, positive and out there truly living their lives and not letting CF slow them down. As a mother of a child with CF, I can only hope Olivia takes on some of the great attitudes I witnessed firsthand at the conference. CF kids, teens and adults are without a doubt some of the strongest people to walk the face of this earth, I have no doubt. So with hope on the horizon we keep fighting, we keep praying, we try to stay strong, we keep doing all we can to fight CF to keep Olivia healthy and we keep faith in the medical professionals that a cure is within reach and that with time and money we will get there. I must have hope, for without hope I have nothing. My hope for a cure requires money, time to put on my fundraising hat and kick it into high gear to raise money for Team Olivia to get us closer to that cure and blow that stupid median life expectancy number away for good.






Tuesday, November 13, 2012

Thirty


For so long I had been waiting and wishing and hoping that I would see 30lbs when Olivia stepped on the scale. After being up to 29lbs 11oz two weeks ago, we stopped her periactin for a week since it was losing its effect and she dropped to 29lbs 0oz in a week. Last week when I weighed her and saw the weight loss, my heart sank - thirty seemed a long ways away.


We started the periactin up again last Monday after the weight loss to see if her appetite would increase. Thankfully it has and she's been eating much better over the past week. Yesterday when I weighed her she was up to 29lbs 14oz, an awesome weight gain in one weeks time. Thank you periactin! I was beyond thrilled to see her weight had gone up again. Today at her clinic appointment, Olivia stepped on the scale and I finally saw it, 30lbs 3oz. Yay - 30! It has been a long time waiting and I'm glad it's finally here and as happy as I am that she has hit 30lbs she still has a ways to go and I hope that 30 quickly disappears and fades into 31, 32 . . .


Thus, today's appointment was a pretty darn good one compared to many of those we've had where I've come out in tears. Both her dietitian and the doctor were pleased with how well she has grown and how much her numbers have increased. For Olivia to gain 3lbs in three months is astonishing and a first, she's never done that before. In the past we were lucky if she'd gain 1lb in a three month span.


We were told today that we are doing a great job and to keep doing what we are doing and to return in 3 months. Everyone told Olivia she was doing great and to keep eating and keep growing  - I pray she does. She has grown both in height and weight, she's in the 66 percentile for height, the 41 percentile for weight and her BMI is in the 20th percentile. Ideally they want her BMI to be near the 50th percentile so we have a ways to go but we are making progress.


Thankfully we weren't threatened with the g-tube today but it's still in the back of my mind, I know it's still an option and the only option left if the periactin fails. So, we'll see how the next 3 months go and I pray that with hard work, dedication, perseverance and the periactin that we can keep Olivia gaining weight. Bring on the holidays and all the yummy, fatty foods that go along with it and hopefully I can get Olivia to eat some of it and pack on the pounds. Now of course just waiting on the results of her sputum culture and praying that she doesn't culture any nasty bacteria . . .

Wednesday, November 7, 2012

University of Minnesota - CF Virtual 5k

For the past few years our family's have participated in the U of M Breathe Easy CF 5k. In 2009, just 2 days after we were home with Olivia for the first time after our stay at Children's Hospital, Grandma Pam, Aunt Emily and Makayla started the tradition for us and headed down to the U of M to join Anissa Lightner, Kevin Lightner and Kris & Karly Lightner for the very first ever Team Olivia event. Just a few weeks after finding out about cystic fibrosis, Olivia's diagnosis and what this disease even was, they kick started Team Olivia and were already fighting for a cure, I am forever grateful. 

Jeff and I were still too in shock to even think of participating in the event but I'll never forget the day. It was a Sunday afternoon and it was cold, cloudy and gloomy, mimicking my mood at the time and it was the day Grandma Pam had to leave to go back to work and her life. We were absolutely devastated that she had to leave. She and Grandpa George had been staying at our house, taking care of our son Landen while we were at the hospital with Olivia, cooking, cleaning and doing everything we were too weak to do for ourselves. This event came at the perfect time because it was a reason for her to go - we kept her there until the very last minute, hanging on and if it hadn't been for this event that took her away and harvest that Grandpa needed to get to before winter settled in, I'm sure we could have convinced them to stay. 


As much as we hated and feared her leaving us, looking back I know it needed to be done. She along with so many others had done more than their share to help us out during such a difficult period in our lives and we needed to pick ourselves up and learn how to go on as a family, for us, our son and our daughter. So yes, the day is still vivid in my mind, so much about it. It was the day that family and friends chose to start our fight against CF and formed Team Olivia - this picture still brings tears to my eyes:

  


I remember when I got this photo in an email I cried for multiple reasons. To see that these loved ones had started our team meant so very much to me and to see Olivia's name on that sign made the realization that cf for us was real and not a dream I was going to wake up from sink in that much more. But I remember as I sat staring at this photo through many tears, it ignited a flame in me too. It was this photo and the realization that Team Olivia was official that made me search out other events to join to raise more money for the CFF. This event and this photo were what ultimately began our journey with the Climb for a Cure event . . . more about that another day. 


So here we are . . . 3 years later, a lot has changed. The race has taken on a new look this year too. In an effort to donate as much money to the CFF as possible, the U of M has decided to go virtual with this years race and avoid all the extra expenses that would otherwise takeaway from the total donation amount. Genius! The more money that goes directly to the CFF the better! I did another virtual CF race this year and loved it because it was on my own time and on my own turf, it was great. I hope this race that the U of M is putting on is super successful in it's first year as a virtual race. Virtual races are super great because anyone, anywhere in world can do it. All you have to do is register, get your shirt in the mail, do the 5k and you are done. Of course, Jeff, Landen, Olivia, I and Shelby will be participating, for all interested in doing it, check out the details below from the U of M website:


The Cystic Fibrosis Virtual 5k is a race where participants can create their own course and run/walk their route wherever they happen to be. The process is easy, register on racemonkey.com CLICK HERE during the month of November 2012 and we will mail each participant their very own CF 5k shirt. Then, run or walk your route anytime from November 1st through December 9th, 2012. After you complete your 5k, snap a picture with your shirt and email it with your time to amici004@umn.edu. After everyone's results are in, we will put together a story, list race times, and post photos to gophersports.com. 


For further details visit the U of M Gophersports website. 


Thursday, November 1, 2012

Trick-or-Treating

The kids had an absolutely fantastic Halloween this year. On Tuesday night the kids and I carved pumpkins. I did a quick google search for 'jack-o-lantern faces' and as soon as I saw the kitty one and showed it to Olivia, she had her pick. Landen picked what he said was a spooky face, he's all about skeletons and bones this year, much different than last year when he dressed up as a garbage truck! My how fast they grow. I can only imagine what he'll pick to be next year for Halloween. I believe for him, the days of "cute" costumes are over.




On Halloween, I took the kids to Jeff's work where they were able to go trick-or-treating around the office and picked up a lot of candy. After trick-or-treating we enjoyed a cheeseburger and hot dog lunch with daddy which the kids thoroughly enjoyed. A few of Jeff's co-workers even commented that Olivia "has to be the cutest kitty I've ever seen", I'd have to agree :)


In the evening we headed over to Aunt Emily and Uncle Mike's house and the kids were able to go trick-or-treating with their cousins, Austin, Carter and Makayla. They had so much fun and it was so nice to get over to their house as we never see them often enough. Landen and Olivia are usually pretty quiet when they first get around anyone but they warmed up well to their cousins and soon were running along with them from door to door to collect their treats. Thank you Em, Mike, Austin, Carter and Makayla for letting us come over to go trick-or-treating with you!

Landen the skeleton, Olivia the black kitty, Makayla had a pretty pink princess dress that had black kitty's on it, it was adorable), Austin the ninja and Carter as Spiderman.


Trick-or-Treating