Thursday, December 20, 2012

Happy Holidays!

Happy Holidays from Our Family to Yours








With Christmas just 5 days away, we want to wish all of you a very Merry Christmas and Happy Happy Happy New Year filled with good times and great memories to forever cherish. We'd like to thank each and every one of you who supported us this year in our fundraising efforts of raising over $12,500 for the CFF as we continue to pursue our dream of a cure for Olivia and all those with CF. With each dollar we raise, our dream becomes closer to a reality and we will never be able to thank you all enough for your continued support. 

We would also like to thank all of our family members and friends who take extra precautions and make sacrifices themselves to stay healthy during the ever so precious times when we are all able to get together. The family gatherings and celebrations we make it to our far and few but those we do when we aren't fretting over germs are so very fun and memorable. With the new year right around the corner, I cringe as another year has all to quickly come and gone but thank the Lord for all that we have to be so blessed for and always remember that every tomorrow is a gift. Time is precious. May you make every moment count as you spend time with all those so dear and near to each of you this holiday season. Blessings to you all.


Saturday, December 15, 2012

Broken Bone Update

Yesterday we had Olivia's follow up x-ray. As expected it didn't show a whole lot of difference from the first one since it had only been 1 week but we all did see the beginnings of the healing process and the forming of the callus around the fracture which is what we had wanted to see so we left satisfied. We will return in about 4 weeks for one last x-ray.


Circled in red is Olivia's broken collarbone. This is the first x-ray, the one yesterday looked exactly the same with a little bit of shading around the broken bone, which is the forming of the callus. 

So for the next 3 to 4 weeks Olivia is supposed to be careful, as much as that is possible with a very busy 3 year-old. She's pretty good about realizing her limits and will only use her arm so much so that is good. The hardest part is for Jeff and I in trying to prevent further falls, slips, trips and what have you to prevent re-injury. The one good thing we did find out about her broken collarbone is that when you break a bone before puberty hits, it heals completely and we will never  see anything to indicate the bone was ever broken if we were to take an x-ray after it has healed completely. We are thankful that she is feeling better and back to her spunky little self while continuing to be somewhat cautious. 








Friday, December 7, 2012

No More Monkey's Jumping on the Bed . . .

I know I heard that saying many times as kid - I've told it to both Olivia and Landen numerous times as well but apparently there is something just all too tempting about bed jumping for kids. This past summer Olivia was told this by the doctor who was examining her sore foot after jumping off big brother Landen's bed, but apparently the message didn't sink in.

On Weds night I was cooking supper when my children quietly made there way up to Landen's room to "play" and of course as soon as my hands were immersed in the raw chicken that I was attempting to cook, I hear the thud, followed by the screaming and crying. I swear even if I had eyes in the back of my head, I could not keep up with Olivia. She is her own worst enemy. She is a daredevil and is not afraid of anything.

We knew she hurt her shoulder area as that is what she told us. After googling and knowing that there isn't anything to be done for a broken collarbone, unless it needs surgery, we decided to sling it, so Jeff bought a "one-size fits all" sling (which clearly doesn't) so I quickly ended up making her one out of an old receiving blanket. So we had her arm stabilized and that seemed to help some. You could tell she was still in pain and knowing that even if she did fracture or break her collarbone they wouldn't do anything for it we decided to take her in for an x-ray for our own piece of minds.

Fast forward to this morning . . . a doctor visit and x-ray confirming that Olivia broke her collarbone on the right side. As if a broken collarbone on a 3 year old isn't hard enough, throw in CF and the fact that she has to do her fast pulsating vest therapy twice a day for 30 minutes each. So thankfully Jeff is very handy and will be able to come up with something useful I am sure to help stabilize her collarbone while enduring vest therapy twice/day as to not hinder the healing of the bone all while being able to continue her therapy to keep her lungs clear.

We will go back in 1 week for another x-ray to make sure that it is healing as it should be.

It's always something . . .

Wednesday, December 5, 2012

My "Ah Ha" Moment

You know those moments when you finally get it - like trying to solve a hard math problem and finally after so long you say, "Ah Ha" because you figured it out? Well, it wasn't a math problem I was solving but I did have an "ah ha" moment today.

This morning and like every other morning, I check my email and do all those internet things while Olivia is sitting beside me doing her morning vest and neb treatment and I had one of the most fascinating and touching emails in my inbox. I've received a handful of amazing emails from other CF mom's over the past 3 years and I cherish them all. The email I got this morning was from a CF mom who has lost 2 children to CF and has a son in his 30's in need of a lung transplant and she continues to fight CF every single day. She sent me one of the most encouraging and hopeful emails I've received since beginning my journey with CF. The fact alone that CF has taken so much from her and that she took the time to offer me hope - amazing. I can't even begin to try to understand her journey. I've lost to CF already, it's crushed many of my hopes and dreams, it's changed me and it's changed my life but the things I have lost are nothing compared to what this mother has, she lost two of her children to this disease.

My hands are still shaking and my heart is racing because in her email was my "ah ha" moment. I won't share it all because it was for me, it is mine, it was between her and I and it's something I cherish. But what I will share about it is this. She wrote, "I'd do anything to trade years with you. I wish my children had been born now, our lives would be so different". That was my "ah ha" moment. My journey with CF has only just begun, and it is a very hopeful and promising time for CF. The life Olivia will lead and everything we've been told is so much different than what this mom was told many years ago. I can't even begin to imagine if my journey was beginning 10, 20, 30 years ago when things were so much more difficult and less hopeful. I'm not downplaying CF for Olivia at all, it is hard, it is a struggle, it is constant, it is a life-threatening disease and it is scary, but it is so much different than what it would have been at a less hopeful time - I am blessed. I know things could always be worse, I believe it and I say it but this morning, I really got it. I am selfish, I want my daughter to live a long life not inflicted by this disease but this disease is different than what it used to be. To realize that there are people out there that can only wish to be starting a journey with CF now was a big eye opener. All those days when I want CF to go away, to know that there are others out there who'd take the journey I have been given in an instant, in a time of hope and promise of better things to come was my "ah ha" moment. I truly am blessed, times have changed, a cure is out there, things could be worse. My daughter has a fighting chance at a life so much less impacted by CF.

So today, my heart is heavy. Heavy for this mom who has lost her 2 children to cf and who continues to fight it everyday for her son, but I also feel hopeful with a renewed spirit. I'm hopeful because this mother offered me encouragement and hope despite all she has been through, she found time to send me a message of hope. I'm hopeful because her email and our nurse practitioner Cindy were right. Cindy told us on day 6 of Olivia's life, "don't give up your hopes and dreams for Olivia - she will achieve them all". At the time I thought she was nuts as it felt I was handed a death sentence for my daughter but she was right, this is a hopeful time for CF. I fight, advocate, fundraise and do all I can think of to raise money for a cure for my daughter but today if it's even possible, I have an even more renewed spirit to fight. To fight for that cure and make it a reality for Olivia and all those that it will benefit and also for those who have loved and lost to this disease. My spirit has been renewed, I will do everything I can to keep Olivia healthy, do everything in my power to raise money for research to get that cure, and pray every single day that the cure is just around the corner so that we all can rejoice in the lives of those with CF that a cure will forever change. I can only hope to be like this mother who has loved and lost to CF and yet remains full of hope and faith that better things are coming. I can only hope that as my journey with CF progresses I can have half of the courage, strength, determination and faith that she has conveyed to me. I thank her for allowing me to see my journey through a new lens.

After making a call to the CF clinic I received the results of Olivia's sputum culture. She had cultured a moderate growth of staph again after being clear of it for the past 6 months. The clinic is no longer treating it with antibiotics unless it is symptomatic which it currently isn't so we don't have any additional course of treatment regarding it for now. We stopped the periactin this past Saturday as the appetite stimulant affects had worn off completely. With stopping it she has dropped in weight to just 3 oz more than she weighed on Nov. 13th. So it feels like we are starting all over with our weight fight but we are hoping she can perhaps maintain her weight until Saturday when we will start the periactin back up and hope that it will increase her appetite and work again to help her gain weight, we will know more on where we will go from here within the next few weeks. So as it goes, the struggles are still there, CF rears it's head again and makes us fight even more than we do every single day.

As the holidays roll around and the joy of seeing them through my children's eye's is always my favorite time of year, the end of the year and the holidays are also a reminder of another year that has all too quickly come and gone. This for me will always be bittersweet, my children are growing up all to quickly, time never seems to slow down but after today, and my "ah ha" moment I will now reflect and look back on my journey through that new lens, the lens surrounded by hope and know that no matter what our journey has in store for us, we are blessed, we live in a time when CF is and will continue to change. My hope going forward is that we can keep Olivia as healthy as possible, that we will see the day when her life is forever changed for the better by a cure, that we will continue to grow as a family and as individuals and reclaim some of what CF has taken from us and be able to really live again.

I cannot thank this cf mother enough for her insight, encouragement and hope, for opening my eyes further to look differently and with thankful eyes on all that I do have to be grateful for.




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




Sunday, October 28, 2012

Halloween

Halloween is by far one of my most favorite times of year mostly because the kids love it so much but truth be told, I have just as much fun decorating the house for Halloween too. Saturday night we had a Halloween party, we all dressed up in costumes and I cooked up some fun Halloween treats and snacks for supper. I know it was a hit because as we were eating Olivia looked at me and said, "This is awesome!", and in that moment I knew that all the time it took to make the treats for the mere 10-15 minutes it took for us to scarf them down was all worth it. I'm sure it'll be a memory the kids will talk about for quite some time and a Halloween festivity we continue around our house for years to come.

Landen is loving his x-ray skeleton costume and plays the part well, running around the house trying to scare the rest of us. Olivia chose to be a black cat this year and had so much fun being dressed up as a black kitty that she cried when I washed the nose and whiskers off her face last night so first thing this morning I had to draw a nose and whiskers back on. The girl loves her kitties! Jeff chose to be a motorcyclist and I was a Mommy Fairy.

I can't wait for Halloween night when the kids will get the joy of dressing up again to go trick-or-treating. Of course we'll have pumpkin carving this week too. So much fun!




Our Halloween supper. Halloweenies, Monster Mouths, Mummy Pizzas, Monster Fingers and Skeleton Bones that I made up, topped off with store bought cupcakes for dessert. 





Monday, October 15, 2012

Urgent Care/ER Visit

I hate that CF is a "rare disease" one that so many people and professionals don't know enough about. The looks of complete confusion and lack of understanding that I get when I talk about it are painful. Of course every word about CF that comes out of my mouth, I understand, I get, and to try to tell people who don't is frustrating, to say the least. To me it's not a rare disease, I know what CF is. It is the disease my daughter has, the disease that is trying to rob her of life, the disease her and I spend every single day battling to keep her as healthy as we can and here with us for as long as we can. CF sucks, I wish there was a cure, I wish it would all just go away.

Last weekend Landen came down with a cold. A week later his is still lingering. Despite all Jeff and my best efforts to protect Olivia from it last weekend, she was exposed before Landen even had symptoms and came down with it a few days later. So it goes and has so many times before, but it's still maddening, trying so hard to protect her to no avail. Landen's cold was just that, a cold. Olivia again, hasn't done as well with this one.

This past weekend we were visiting Grandma and Grandpa, 3 plus hours away from home. Saturday night Olivia developed a dry, hacking cough in the middle of the night. It became persistent enough that Jeff and I got up with her at 4:00 am to do her vest and nebulizer to help clear out the junk. Once she began her treatments it cleared the mucus and she coughed so hard she vomited it up a few times, at least she got it out. After her treatment and for the remainder of the morning once I got her back to sleep, the cough continued. After breakfast we packed up and high-tailed it back home. Olivia's cough remained and later in the afternoon she began to complain that her ear was hurting. 

I never run her into the doctor, unless it is scheduled or absolutely necessary and in the past 3 years I have never had to take her to urgent care or the ER. I avoid those places for as long as I can because obviously those places are crawling with germs. Beings it was a Sunday evening I figured I should at least call the on-call Pulmonologist from CF clinic to make sure they didn't want her to be seen since the cough had been increasing for near 24 hours and the crying of ear pain had been going on for a few. 

After speaking with the on-call doctor, she advised me to take her to urgent care to get her ears and lungs checked and go from there. I figured the visit should have been simple enough, we were essentially taking her in to see if she had an ear infection, make sure her lungs were clear and prescribe her a antibiotic if needed for the ear as advised by the Pulmonologist. We checked into urgent care first and after this and that they said her ear was red and would need to be treated but because Olivia has CF the physicians assistant in urgent care just wasn't sure if that was enough given her other symptoms. She then passed us off to ER, again because Olivia has CF. 

Thankfully, once we were there we got a very good doctor. He and I spoke at length about her symptoms and I said given the fact that both he and the PA in urgent care said her lungs sounded good despite the cough that it didn't seem necessary to do a chest x-ray, he agreed and said he'd treat her the same with or without the x-ray so we went without. In the end he decided to treat the ear infection with a course of Bactrim for 10 days. 

It was a whole lot of run around for almost 3 hours for an ear infection. Fine that they put her on an antibiotic to treat the ear as he deemed necessary. Frustrating that because people don't understand CF enough that they jump through all these different hoops and pass you from one place to the other "just to be sure". I'm certainly not downplaying the severity of CF at all, it sucks and I know it wreaks havoc and despite a person looking healthy on the outside, with CF they aren't, I get it. But honestly, an ear infection is an ear infection regardless of CF or not. To talk to someone who is supposed to be helping your daughter whom clearly doesn't understand all that CF is, is maddening. Again, the reason I have successfully avoided going to the ER and urgent care for the past 3 years. The same reason I try to avoid doctors anywhere other than the CF clinic where people get CF. The same reasons on many days, I wish we didn't live so far away from the CF clinic and hospital. 

Last night Olivia's cough was still persistent despite continuing treatments every 5 hours but this morning she is doing better aside from complaining about her ear which the antibiotic should help alleviate soon. Still makes me question if I should have taken her in at all or if things would have cleared up on their own. There probably isn't a clear answer either way, what's right, what's wrong, did I make the right choice by taking her in . . . ?  Who knows. Being a parent is difficult, being a parent of a child with a chronic illness is more-so. Many decisions I make regarding Olivia's care I question with no clear answer. At least she is doing better this morning. Hopefully it all clears up in the next few days. Hopefully we can catch a break and Landen doesn't bring more germs home from preschool for a little while at least. Hopefully more professionals I encounter will one day understand what CF is and won't look at me with faces full of pity and like I have two heads when I talk. Hopefully, someday, there is a cure. 


 

Tuesday, October 9, 2012

Fall 2012

This fall we have had some absolutely beautiful days, the kind where you can be outside in a sweatshirt, the sun is shining, the winds aren't blowing you over and to look around and see all the beautiful changing fall colors, those fall days are awesome. I wish there were more of those than the cold, dreary, windy, icky ones we've been having lately.

We've taken advantage of the gorgeous fall days we have had and the kids have enjoyed some fun activities. My favorite fall activity is going to the pumpkin patch. It's a tradition we started when Landen was born and one I will continue to do for as long as I can convince the kids to come with me! The kids have also enjoyed many weekend trips this fall to what I honestly believe is their most favorite place on earth - Grandma Pam and Grandpa George's house. They absolutely love going there and get so excited whenever we tell them we are going to visit grandma and grandpa. They love the farm activities they can do at their house, the hot tub, the trampoline, exploring down by the big barn and all the other numerous fun things Grandma Pam always has up her sleeve for the kids to do. Olivia especially loves getting to see the kitties and their cute little puppy Muffy.

This past weekend Olivia was able to celebrate her 3rd birthday with a Hello Kitty party with my side of the family. She had a lot fun and loved everything Hello Kitty. As this time of year also gives way to so many germs, it's always difficult to get everyone together. We surely missed aunt Darci and Braelyn who weren't able to come because of illness but were very thankful the Johnson family and Grandma Dianne could come to help Olivia's day be extra special. Because sicknesses are always prevalent this time of year, Jeff and I have seriously talked about celebrating Olivia's birthday in the summer with my side of the family like we do with his side rather than around her actual birthday so that everyone can make it, thanks CF. Anyway . . . here are some fun fall photos from fall 2012. Enjoy.

Olivia and Landen enjoyed a ride with Grandpa George in the combine. I used to love combine rides when I was a little girl and still remember doing so with my grandpa. I am thankful the kids have this opportunity.

Olivia had the perfect view from atop Grandpa's cooler. This combine is so spacious that Daddy, Landen, Olivia and Grandpa all got to ride at the same time. They said I could have fit in too but I chose to stay back and capture the memories in photographs.

Enjoying a moonlit evening of star gazing from the hot tub at grandpa and grandpa's. This was Olivia's first time in a hot tub and she loved it.

Olivia's second favorite thing to do at grandma and grandpa's - jumping on the trampoline.

Grandma and Landen took a hike down to the barn to gather a bale of hay for fall decorating. It was over 80 degrees this fall day, Landen was hot and thirsty at the end of this adventure. 

Grandma Pam and I took Landen and Olivia to the farmer's market where they each picked out a pumpkin and decorated it. Their finished pumpkins are fall decor atop the hay bale that Landen and grandma fetched from the barn.  

Olivia, Landen and Grandma enjoyed a game of Candy Land with a bag full of treats. This is Landen's favorite way to play this game and I believe it was a close race between Olivia and Landen but Landen pulled through at the end to win the game.

The happy birthday girl on birthday morning.

On Olivia's birthday we took our trip to the pumpkin patch. Olivia is trying to pull daddy in the cart on our search to locate our perfect pumpkins. Not working too well!

Landen was all smiles when he found his pumpkin and did a fine job of posing for a photo on his pumpkin of choice.

Olivia's found her perfect pumpkin with a little help from daddy.

The pumpkin patch has some fun things set up for photo ops, here we are next to the haunted house. 

This one we thought was pretty cute and Landen was all excited to climb in the coffin.
 
We ended Olivia's birthday evening with presents and the putting together of her new big girl bed. For over a month I had been asking her what she wanted for her birthday and she'd tell me every time "a Hello Kitty bed", so we got her a big girl bed and I re-decorated her room in Hello Kitty. She loves it. 

Olivia's 3rd Hello Kitty Birthday party.

Eating pizza at the party.

Olivia, Landen and their cousins, Matthew, Emma and Mason at the party.

Olivia is getting ready for the party game, "Pin the Bow on Hello Kitty".

The birthday cake.

Happy 3rd Birthday Olivia!













Wednesday, October 3, 2012

37%

Today Olivia had her 3 year old well check with her pediatrician. We of course are always concerned with her weight and watch it very closely and usually end up cringing the moment she gets on the scale for her minimal weight gain or worse yet, weight loss. Not today.

Olivia has been on periactin to increase her appetite for just over a month now and I am beyond thrilled and filled with emotion that it is actually working. I've noticed over the past month that she eats better and she will on occasion actually tell me "I'm starving, I want a snack", which is music to my ears, regardless of how much work and fight goes into getting her to eat enough of her snacks and meals. On any given day I would rather sit with her for hours on end to get her to eat enough to gain weight by mouth that is for certain but even so it still is draining, wearing and emotionally challenging at times. However, at least it is paying off with the help of the periactin. In just 5 weeks, Olivia has gained 2 lbs. Her weight today was in the 37th percentile. This is so huge for her, she has been in the 10th percentile or less for weight since July of 2012, for over 2 full years. So today this news was the greatest news ever. I am beyond thrilled. With hope, perseverance, prayers and the help of periactin we have succeeded in our fight to get her to gain weight. This is awesome and was cause for celebration here at our house today. A good day indeed.

I know we are gaining ground but our fight is not nor will it ever be over, there will always be setbacks. Olivia has always struggled with weight and we will continue to have to work very hard to get her to continue to gain with the help of the periactin. I can only continue to pray that it keeps on working and her appetite keeps up so that she can get enough calories each day to continue to gain. But as it goes with CF we take things one day at a time so today I am thrilled and happy for Olivia that she has gained weight. We still have a long ways to go to play "catch up" to get where she needs to be for her weight and I know tomorrow will be another day full of hard work and more than likely some struggles to get her to eat enough but for the rest of the night I'm going to enjoy a job well done and face the challenges of tomorrow as they come.

Monday, October 1, 2012

Happy 3rd Birthday Olivia!

To even begin to explain how I feel that my baby girl is now 3 years old seems near impossible. I'm filled with a mixed array of emotions. Terribly sad that 3 years have gone by in the blink of an eye and extremely happy that she is growing up and has been relatively healthy considering all things for these past 3 years. Over the past 3 years our lives have been filled with many ups and downs, whirlwinds and life changing events that to put it all into words just wouldn't do it justice. Olivia has grown up so much over the past 3 years that it just continues to amaze me. She has turned into such a big girl and I am extremely proud. To know where her journey began 3 years ago and who she has matured into today is remarkable. She is an amazing little girl, full of life and love and independence. She is a true joy.

3 years ago our lives changed when we welcomed a daughter into our family with loving and open arms. A few days later our lives changed again when she was ripped out of our arms and hospitalized to undergo surgery to later be diagnosed with cystic fibrosis. There were some very dark days back then and when I see where she is today and where we are as a family I'm amazed. Things were so foreign and scary and I had no idea how to climb out of the dark hole I was in. I'm pretty sure during those first few weeks I hated everything and everyone because it just wasn't fair and such a wonderful joyous time when I should have been bonding with my daughter was instead spent in the sterile, quietness of a hospital room praying for her recovery and waiting for the day when I could hold her again free of wires and tubes. Ugh.

We've all grown up a lot in the past 3 years there is no doubt. So as much as I can't explain exactly how I feel on Olivia's 3rd birthday today, what I do know is that these past 3 years have been blessed and I would not trade them for anything. Everyday I pray for a cure and everyday if I could, I would wish CF away in an instance and everyday I hate this beast that is CF that wants to rip the life away from my daughter. Birthdays are nothing to take for granted, it's a special time to celebrate the gift of life and cherish the years had and pray for another year to come. So today most of all I feel . . . happy. I also feel blessed. I can't say that last year at this time I could say I felt blessed but I have grown a lot in a year. I have hope and I have faith and I know that God is beside us, walking along with us in this journey and carrying me through the days where I feel too weak to go it alone. Today and every single day, I feel honored, blessed and loved. I feel all these things not only because I have a wonderful daughter, son, husband and family but also because I am and do feel extremely honored that God thought that I was a strong enough mother to care for Olivia, love her like she deserves to be loved and do everything in my power to fight for her life every single day against cf. I feel so blessed that God knew that Olivia was meant to be my daughter. As much as I hate CF, the one thing okay about it, I can't force myself to type good there, so the one thing okay about it, is that it has brought my family closer together, it has made us appreciate all the small things and the big things so much more, it has made us never take a single day we have here on this earth for granted but most of all as I have climbed out of my dark hole these past 3 years and accepted and cherished my life, it has renewed my faith in God. So yes, today of all days I am happy and I can honestly say I love my life, it is not easy, our journey is full of bumps along the way but I wouldn't trade it for anything, Olivia has changed our lives for the better and I am so proud to be her mother. So today, Happy 3rd Birthday Olivia, I love you so much!

October 1, 2009
2010
2011

2012









Monday, September 24, 2012

and so it begins.


Ugh. With the cooler and much more fall like weather we are having here and Landen being back to school, I knew it would only be a matter of time until sicknesses lurked back into our home. They made their germy little way back in last week. Landen came down with a cold and then Olivia came down with it a few days later. No fun. It didn't seem too bad for Landen nor did it slow him down so that was a good sign we figured for Olivia, but not the case this time. She hasn't managed quite as well. She's been a lot more congested and snotty. Saturday morning I woke up to her crying and coughing. The night is always the worse for that thick icky mucus so I ran to get her and she proceeded to have a coughing spell and vomited out a bunch of thick nasty mucus on me. Poor thing, I felt so badly for her as it always frightens her when she pukes. Thankfully she got it out though. Thus, we've amped up her treatments to 3 times/day and are trying to get her to rest as much as possible all while continuing to push foods for her lack of weight. So it's been a stressful weekend, busy and hectic, but certainly nothing we haven't been through before, numerous times.

In regards to Olivia's Periactin, she had been doing better with her weight gain and we did notice that it was increasing her appetite after we got to the maximum dosage a couple weeks ago. This has been hopeful. When we went to clinic at the end of August, she weighed 27lbs 5oz. In less than a month she was up to 28lbs 11oz last Monday. That's super great news for her as there have been many times where she hasn't even gained 1/2 of a pound in a 3 month span so this is huge but we still have a long ways to go. She's still about 3lbs under the 50th percentile mark where she needs to be so we have to hope that she keeps gaining. Of course now with her illness, we will be set back as she more than likely has lost weight. That's what makes this journey with her weight so difficult. It always seems you take one step forward and two steps back, it's frustrating and saddens me because it is such a tremendous struggle for her.

This is the start of her 5th week on the Periactin but only her 3rd week on the maximum dosage so we will continue with it until we notice her appetite has decreased and then we will stop it for 3-4 weeks and start back up again. Her appetite has been very poor the past few days as a result of her cold of course. I've had a very hard time just getting her to drink anything, let alone take bites of food. I totally get it, who the heck wants to eat or drink when you feel like crap and are so congested that you can't breathe? It sucks so much though because we have so much ground to gain and can't afford any setbacks such as this. But so it goes, we will continue to do the best we can and push as hard as we can without making food her enemy and see what the next few weeks/months bring before our next clinic visit in November where we will talk about the g-tube once again.

I'm not going to get too down now, after all, Olivia's 3rd birthday is a week away and that's nothing to take for granted so I can't help but feel happy as it nears. I can't believe she will be 3 already. There are so many memories, good and sad from just 3 years ago that are still so vivid in my memory that it doesn't seem like they could have been near that long ago. So it is an exciting time for Olivia as she gears up to turn 3. Birthdays are bittersweet; thrilling that she is another year older and has done well over the past year but sad as another year quickly flew by, all too fast and with this disease one can't help but always wonder in the back of their mind how many more birthdays will come.

Just to show how much of a big girl she is, below is a video of her swallowing her enzymes whole. This is awesome, I'm so proud of her. We took a long road trip yesterday and got to see a lot of fall colors around here, it was very pretty. Beings we were in the car so long, we also took her vest and neb along with our handy dandy converter and were able to do treatments while away, that was awesome to have the freedom to go and do something fun all while being able to keep up with added treatments, got to love technology! Back to the enzymes though, there is a correlation, since we were in the car for so long, I thought it'd be much easier to hand her the enzymes to swallow rather than try to mix them in applesauce and lean into the back of the car to give them to her so I tried it and she did it, put 3 of them in her mouth, one at a time followed by a swig of water and got them down. So last night for her bedtime snack I tried it again to make sure it wasn't a fluke and she did it again so very cool and this for sure will make things easier for us all, super cool. She always amazes me. Now if I can just get her to not be deathly afraid of the toilet to be potty trained . . .

Click the photo to watch a video of Olivia swallowing her enzymes.

Tuesday, September 11, 2012

The End of Summer, Welcome Fall!

Oh how sad it is to see summer coming to an end. On a good note though, we had so much fun and did so many awesome things so at least we made the most of it while it was here. As I look back on all the photos of the summer and think about all the memories we created I have no regrets. Last winter and spring I vowed that we were going to make the most of our summer this year, filling it with fun things, new adventures and of course spending precious family and friend time with those so dear to us that we never ever see often enough.

With Landen in full school mode now this week and our pool all packed up and put away for the summer, despite the 91 degree day we had here today, I feel as if summer is now officially over. However, I'm not near as sad as I had thought I'd be. While summer is by far my most favorite time of the year for many reasons, I am sad to see it exit as it feels like it wasn't too long ago that it just started but I'm also excited to move on and enjoy all the fun autumn memories we will make with the kids. I'm sure the fact that Landen came out of preschool this afternoon and told me "Mom, I had the most awesome day," has a lot to do with the cheeriness I'm feeling. Last year was so hard and ripped my heart out when he struggled to go to preschool and clingged to me for dear life, I'm so blessed that he is one year older, knows what to expect this year and is comfortable going. I know he will enjoy his time there as he gets to experience new things, make new friends, see new faces and just get out of the house and away from me for awhile. As much as I'd love to keep him home with me all day everyday, I know that's not good for anyone and I know this is all a part of him growing up. As sad as I'll be next year when he is off to kindergarten, I will also be happy for him to go out into the world and make new life experiences and make new choices all on his own. Of course the uncertainty of illnesses and germs lurking as school goes back into session still causes me anxiety this time of year, but, having one year behind us already makes it a little bit easier to deal with.

On a super awesome other note, Olivia's sputum culture came back as just "normal flora" so that is by far something to celebrate around here. I'm sure no one besides our family and the other CF families/patients quite understand it all but whenever that icky sputum comes back as all clear and not full of nasty bacteria, we feel so blessed, too much so to even explain, with CF, it's huge. With this clear culture report it has now been 6 months that she's been bacteria free, not even culturing the staph that she had cultured consistently for the past 2 years so we are beyond thrilled.

This week will be the 3rd week that Olivia has been on the Periactin to help increase her appetite. Over the past two weeks we have increased her dosage so she is now at the maximum dose she can be on. We have noticed that on some days her appetite is a lot better than it has been and other days not so much but we are moving in the right direction. We are all hoping that with this higher dose that it'll increase her appetite even more and that she'll be able to pack on the pounds, time will tell. We have our fingers crossed and our hopes up that she will be able to gain weight this way but if not, we will surrender to the g-tube and feel satisfied that we gave it our all, tried as hard as we could and be happy that the g-tube is out there as another tool to help her with her malabsorption.

So, things have been going fairly well around here, after a rough start to the month with feelings of defeat, we have picked ourselves back up, we have continued on with our fight and have and are making the most out of what our lives have in store for us. We are blessed and we are happy that things are going how they are, because like I've said thousands of times before and will for sure say a million times more, it could always, always be worse.

With that, here are some fun photos of how we spent the remainder of our summer:

Cousin Braelyn came over for a sleepover in August, oh my what those 3 don't come up with when they are together, it always makes me laugh and it always results in a photo op. This was apparently some fun with hats.

Landen, Braelyn and I played doctor one afternoon while Olivia was napping. Landen had fun taking photos while Braelyn "doctored me up". For this scene, I apparently had a head injury!

The MN Zoo hosted a dinosaur exhibit this summer and we were delighted to be able to make it out for a day to visit it. Landen loves dinosaur so this was quite amazing for him. He had a blast and could have spent all day there. I wish we could have gone more than once as does Landen since he now refers to the MN zoo as the "Dino Zoo". 


The dinosaurs were super cool, I heard many kids screaming with terror as they looked at them so they were definitely life like. For sure this was a wonderful memory created and one that I'll never forget. 

Landen in his Turtle swimming lesson class. During the first week he was absolutely terrified to put his head under the water and by his final lesson he had no problems putting his entire face in the water and was even comfortable enough that he could float on his back while his instructor let go of him. We are so proud of him.

 
More fun times spent in the pool. Both Landen and Olivia were much more comfortable in the water by summer's end.

We spent Labor Day weekend with Jeff's family at the lake. Olivia had fun playing way up high in the big tree at Grandma and Grandpa's lake place. Grandpa George might have to build a tree house up there as this seems to be a favorite spot for all the grandchildren.


While at the lake over Labor Day we took the kids out fishing and they were catching sunfish and perch faster than Daddy could keep up with putting new worms on their poles. They had a blast and it was fun for Jeff and I to watch them enjoying themselves so much. 

Emily, Makayla and I all have September birthdays and Olivia's is in October so each year over Labor Day we all get together to celebrate them all which is always so much fun. I'm lucky enough to share a birthday with my sweet niece Makayla, which I think is pretty special. This year we all had a blast at the birthday bash.

Both Makayla and Olivia enjoyed their birthday celebration with a Hello Kitty cake. 

Happy Birthday Mommy! My birthday was on Monday. Landen told Jeff that he wanted to get me some flowers that could be in the house and would last forever. So Landen found some cool daisies that even came in his very favorite color - blue, unfortunately I told him they wouldn't last forever but he was okay with that. Olivia picked out the balloon but kept it to herself, she wasn't about to share it. We also enjoyed supper out at a restaurant which was super since I didn't have to cook or do dishes!

1st Day of Preschool - 2012
1st Day of Preschool - 2011

Landen started his 2nd year of preschool today. My what a difference a year makes! He has grown up so much in one short year. Today his teacher told me he did awesome and is so sweet. I love hearing that!
Here's to wishing you a great school year bud.

And finally, next up is Olivia's 3rd birthday, it's so hard to believe 3 years have gone by already. She's turning into such an independent little lady. She's at a fun age and we cherish every single day we have with her. As it is with CF, we thank God for the blessed 3 years we have and hope and pray that we have so many more to come.