Monday, December 26, 2011

One of the Best Days Ever

Over the past few weeks, I had really been dreading today as it was "weigh-in day",  the day I had to weigh Olivia and report it to the CF clinic. I've been wanting to put her on the scale almost daily over the past month to see if our hard work in trying to get her to gain more weight through higher fats and calories in her diet was actually paying off but avoided it because I didn't want to be disappointed before Christmas if it wasn't. Over the holiday, she hadn't been eating as well and her schedule was more out of whack just because of all the other fun things going on so I was worried as I laid down to bed last night. I knew though that one way or another, we gave it all we could over the past month, feeding her the fattiest foods we could find, pushing her to eat and eat and then eat some more until we were all frustrated and defeated so one way or the other, we'd know if diet was sufficient enough to help her gain weight or if a g-tube was in the nearer future. As if we should ever doubt Olivia, she's amazing, and today was no different. After lunch Jeff and I put her on the scale and to our utter surprise it read 25 lbs 8 oz. Through tears of pure joy we put her back on 5 more times and weighed her in kilos and lbs and continued to get the same result - Olivia had gained over 1.5 lbs in 4 weeks! One month ago she weighed 23 lbs 13 oz. To put it in perspective for her, Olivia gained more weight in the past 4 weeks than she gained in the previous 6 months! That's a huge huge deal especially given all of her weight challenges already.

So through all of the hard work in trying to increase calories and fats and sitting for hours on end each day to get her to eat as much as possible, the hard work paid off. So at least for now, we know that through her diet alone she is able to gain a good amount of weight. She still has a ways to go to get to that 50th percentile of height to weight but at least we are gaining. I know that the g-tube will still linger in the background as a possible option for her because we're not there yet; but at least for now it's a ways off.

So today is a happy day. We spend every day fighting CF along with Olivia and thankfully she's doing well but very rarely do I feel like we overcome it. It always feels that we do what we need to do through therapy and medications to keep it at bay, or on some days we do everything we can and it's still not good enough because CF gets the best of all of us, but not today. Today I know that we kicked CF's ass, and that's the best feeling in the world, definitely one of the best days of my entire life.

Thursday, December 15, 2011

Happy Holidays!

With 2011 quickly coming to a close, I wanted to get 1 more post in before we welcome in the new year. What a year 2011 has been for us with so many fond memories created. We lived life a little bit more by venturing out and doing more things this past year which was good for all of us. The kids enjoyed time spent with family, trips to water parks, camping, and many day trips just out and about which is a big achievement over last year. Realizing that we can live in a bubble but no one else does has helped us to relax a tiny bit, knowing that germs/sickness are unfortunately, just a part of life. With Landen starting preschool and bringing home illness after illness we've realized that our bubble bursts when he's exposed to so much so this has been a bummer but I try to also see it as a blessing too, knowing that there's only so much we can do, so we need to get out there and do the things we want to do today. We are still ever so diligent with our infection control practices and do what we can, making Olivia's health our top priority.

Overall Olivia had a really good year. She suffered from some colds, a bout with the stomach flu and ups and downs with her weight, but all considering, she is doing well and fighting CF every step of the way. Over the year she's developed and grown so much. Daily her vocabulary increases and with all the sweet things she says, my heart melts a little bit more each day. She's become my number one fan and is always just a footstep behind. She's so intuitive and some days I feel that she's much older than 2 for all that she already understands. Aunt Darci and her made up a "Cheers" game one day as we were trying to get her to drink more of her special milk to pack on the pounds. The two of them would cheers and then guzzle their drinks, which Olivia thought was so fun - whatever works to get her more fat and calories, right! Now whenever I'm pushing her to eat and drink to the point of pure exhaustion, she must be able to tell I'm getting frustrated as she'll so sweetly hold up her cup and say "Cheers, mama", which always makes me smile and relax, it's as if she just knows. I'm finding that with each day she grows and develops more into her own little person, I just love her more and more, as if that is even possible. She is a fighter and doesn't let anything slow her down and for that I am so grateful, I'm thankful for the good year she's had and I hope that 2012 will be as good if not better for Olivia. 

As another year has so swiftly passed, I find it hard some days not to think that 2 years are already over, Olivia's growing up and is already 2 and the time just keeps flying by with no slowing down in sight. On some days this saddens me, to think my baby is a toddler now and already 2 and there go 2 years closer to the end. I hate that this disease makes me think this way but I also know this way of thinking is linked to the disease itself. When you are told numbers, median survival age and statistics upon statistics regarding CF, it's an inevitable mindset and it makes some days very hard. So as another year comes to an end it's bittersweet. I'm so grateful for the wonderful year I've had with my two fabulous children, Landen and Olivia, and my wonderful husband whom I truly live my life for. We made it into a great year with memories I'll never forget, little things that mean so much but it also saddens me because those are 2 years we'll never get back. So as 2012 is right around the corner, you can be sure just as I've done for the past 2 years on New Year's Eve, I'll sneak into Olivia's room and just watch her sleeping so peacefully and whisper to her how much I love her and that my wish for the new year is for a cure for CF because I will never stop fighting for her and all those with CF because I know that it's never enough until a cure is found because even with all the progress that's been made, there are still far too many young lives lost to this disease every year.

With that, we will enter into 2012 by continuing our quest for a cure for Cystic Fibrosis. Our first CF event will be on Saturday, February 4th, the 2012 Climb for a Cure. I invite any one interested in sponsoring us or joining our team to do so. You can find information about donating or joining our team at my Climb page: I wish all of you who follow along with Olivia's journey a very Happy Holiday season and I thank those of you who support us through your generous donations to the CFF. May you all be blessed with a wonderful 2012.

This is currently my favorite photo of Landen and Olivia.
A priceless photo of the pure joy found in the simpleness of sledding with daddy.
These memories are the ones that I cherish the most.

Monday, November 28, 2011

Today Olivia had her follow-up visit to the CF clinic. Over the previous few days, I had a gut feeling going into it that it wouldn't be a fun day, as I knew from her last visit that her weight was continuing to fall off the growth charts. As it's often said, "follow-your gut instinct", mine proved to be right, unfortunately. Instead of finding joy that Olivia had gained 1 lb in the past 3 months, which was better that the 1/2 lb she gained during the previous 3 months, we instead were hit with the harsh reality that a GI tube will likely be in her near future. She continues to grow taller but her weight isn't keeping up. Where her height is near the 75th percentile her weight is at the 9th percentile and thus her weight for height ratio has now fallen off the growth chart completely. So it proved to be a bummer of a day, to say the least.

I remember when Olivia was first diagnosed with CF at 5 days old, the pulmonary doctor mentioned GI tubes and that was the one thing I never wanted her to have to go through. Doing nebulizer and vest therapies and taking the numerous meds she does everyday aren't constant reminders of CF because they have a time limit. After therapy is done, we put the neb and vest away until the next therapy session. After she's taken her meds, they too are out of sight until the next snack or meal and she goes on living just like any other little girl whereas a GI tube is permanently inserted into your stomach for an extended length of time, it doesn't go away when the treatments done and will be a constant reminder of CF. Life is hard enough for kids, children, teens without noticeable differences and this was one thing I didn't want her to have to face, at least not this early in her life.

While I know we have done about everything we can to get her to gain weight by pushing fatty foods high in calories and at times forcing her to eat more than we should, I know it's not Jeff, I or Olivia that have failed because as is all too often with this disease, that I hate so much on days as it rears its ugly head, there are so many things with CF that you can do absolutely right that will still never be good enough.

So for the next 3 months we are in a watch and see stage, praying and hoping with each day that she gains enough weight to avoid the GI Tube, at least for now. We will try even more to continue to get her to gain weight through foods higher in fat and calories and see what happens. Monthly we have to weigh her and report to the CF clinic for them to evaluate what our next steps will be. So for now, I will grasp on to what hope I have left and do all that I can through foods high in fats and calories to try to help Olivia gain weight so that at the end of these 3 months, we will know that if this doesn't work, it's unlikely that her diet alone will be enough to help her gain weight and then we'll have to go down the GI tube route.

The holiday season is always stressful, ours will be even more so worrying about what lies ahead for Olivia but as she has proven to us many times in the past, she is a fighter and I hope too that she can overcome this battle.

Wednesday, November 23, 2011

A Season for Thanks

Every so often at preschool, Landen's teacher will ask each student in the class the same question, record their responses and put them out on a big board for the parents to see as they pick up their children. Last week at preschool the question was, "What makes you happy?". Most of Landen's classmates said some sort of toy or food, one little girl said her mom and here next to Landen's name for what makes him happy is Olivia. As Olivia and I stood their waiting for big brother Landen to come out, I couldn't help but tear up at his response. I was amazed that he said something other than a toy and that he didn't just repeat an answer of one of his friends as is sometimes the case. Realizing how special of an answer that was and what a great big brother he is to Olivia, again made me realize that I sure do have a lot to be thankful for this holiday season!

Landen and I made "thankful turkeys" a few weeks ago and one of the items on my list was good health. Although I can't say that we haven't been hit very hard this season with our share of colds, as it seems the kids have both been sick nonstop over the past 3 months, I can be thankful that the kids have fought off the colds well and that Olivia's colds haven't developed into anything worse. It seems that I've been wiping snotty noses and doing increased treatments for Olivia nonstop these days but thankfully she continues to fight through each and every illness that comes her way. It's nice to see that she doesn't lose her spunk and craziness and that her colds haven't slowed her down much at all. In the back of my mind I know this won't always be the case and am fearful for those days but for now, I am thankful that she is managing them well and will worry about the unknown when it gets here. 

Olivia has begun to eat better which is a relief but I'm sure she burns so many of the calories she does get because she's so busy and just breathing in general for her takes twice as much work than for people without CF. We we keep pushing high calories and fats and hope that she picks up in her weight gain. Her next follow-up appointment is next week at the CF clinic so we'll get a full report then. 

So as this season of thanks is once again all too soon upon us this year, I again am thankful for all the good things in our lives. I am once again so thankful for my two wonderful children whom both bring smiles and laughter to my life everyday. Despite the nonstop illnesses, I'm thankful that Olivia has managed them well without slowing down. Her nonstop spunk can wear me out just watching her but it fills my heart with so much happiness, love and hope for her future in her fight to conquer this disease. Landen's personality and kindness at this young age also bring me great joy. As hard as it is to watch him grow up so fast, the little boy he is and continues to become couldn't make me more proud. We are very blessed to have such wonderful children that make each day better just because they are here. As Thanksgiving is just less than a day away, we wish you all a very Happy Thanksgiving and thank all of you whom have joined in our fight against CF again this year, through your generous donations, participation in events and prayers for Olivia. May you all have a Happy Thanksgiving!

Fun with Shelby

Helping mom decorate for Christmas

Tuesday, November 1, 2011

Halloween Fun

We hope you all had a very Happy Halloween! Landen and Olivia had a lot of fun. Olivia dressed up as a little white kitty and Landen was a garbage truck. The kids got to enjoy two fun trick-or-treating adventures yesterday. They got to trick-or-treat at Daddy's work where they got lots of candy and plenty of compliments on their costumes. Landen was pretty proud of his garbage truck! Then they went out trick-or-treating in the evening around town and had a lot of fun running from door to door filling their buckets with treats. They will have plenty of candy to last them for quite some time.

Olivia continues to do pretty well. Unfortunately she's on her third cold of the season, one of the disadvantages of big brother Landen being in preschool this year. It seems no matter how diligent we are about cleaning, disinfecting and washing hands, we aren't able to prevent the germs being passed to Olivia once Landen becomes sick so that's been difficult.  Aside from physically separating them there's not much else we can do. They are the best of friends and I am so thankful for their close bond but that makes it all that more difficult to stop the spread of germs. Thankfully however she has so far continued to manage her colds well with them not developing into anything more serious so we will continue to hope that stays the case.

I'd like to thank all of you who came out to the U of M Breathe Easy 5k for CF. Despite the rain showers just as the walk started it was a nice event. Goldy Gopher was a pretty big hit with the kids. Landen got a ride on his scooter which he was talking about for a few days after and the kids got their photo taken with Goldy which was pretty special. The U of M Student Athletes put on a great event this year and they more than tripled the amount raised for the CF Foundation from just two years ago! We appreciate all of your continued support of CF; with all the advancements in treatments and all the money raised to continue with research, we continue to hold out hope that some day a cure will be found for cystic fibrosis.

Olivia as a Little White Kitty
Landen as a Garbage Truck

Friday, October 14, 2011

Enjoying Fall

We've all really been enjoying the warm fall we've been having this year as the kids adore spending so much time outside. Now that the cooler weather is beginning to set in, I think the kids will really be sad to have to spend more of their time inside! I took the kids to the Pumpkin Patch and it was so warm this year compared to that of years past that the kids were red-faced and hot after searching for their perfect pumpkins. Olivia loves pumpkins and whenever she sees one will cry out "punkie, punkie". Whenever we leave the house she never forgets to say "See you later punkies", to the pumpkins that adorn our porch. Ever since we've had kids, Halloween and fall are one of my most favorite times of year.

Last week Olivia had her 2 year well-check. She is doing well aside from her continued drop in weight. She now resides in the 3 percentile for weight. She continues to gain weight, just at a very, very slow pace. So we will continue to fight to get her to eat better, take in more fats and calories to hopefully help with the weight gain issue. She continues to grow taller, trying to keep up with her dad and Landen I guess!

We'd like to thank those of you whom will be walking with Team Olivia in the U of M Breathe Easy CF 5k next Sunday, October 23rd. For all the little ones that will be joining us, I'm keeping my fingers crossed that the weather won't be too chilly. We look forward to seeing our family and friends and continuing our fight to help find a cure for CF. Thanks to everyone for all you do; we are blessed to have such a wonderful backing of friends and family in our fight to find a cure for our daughter.

Tuesday, October 4, 2011

Happy 2nd Birthday Olivia!

Olivia celebrated her 2nd birthday this past weekend, my how quickly those 2 years have gone by! We took the kids back to the MN Zoo for a fun filled day where both Landen and Olivia enjoyed the aquarium exhibits as well as seeing the "kitties, meow, meow" as Olivia says, otherwise known as the puma and lynx. Olivia also had a kitty themed party as she absolutely adores cats these days. She's been having fun with her Fur Real kitty that she got, which will be as close as she gets to having a real kitty any time soon. Aside from waking up on her birthday with her second cold of the season, she had a wonderful day filled with fun, birthday cake and presents.  With every day, year, birthday being ever so precious, we are very grateful for the past two wonderful years Olivia's had and look forward to so many more birthdays to come!

Sunday, September 25, 2011


Beings the CaringBridge website is for family's dealing with a health challenge, and I hope to avoid another major health issue for Olivia in the foreseeable future, I thought it would be more fitting to start a blog to continue with her journey.  Here I hope to offer a glimpse into Olivia's life in regards to living with Cystic Fibrosis as well as what life is like for Olivia as a typical toddler. I will post updates on how Olivia is doing and provide details for upcoming CF related events for anyone interested in attending and or donating to the CFF and Team Olivia. I hope you will enjoy following Olivia's journey.

Thankfully Olivia continues to do well. As I had anticipated with Landen starting preschool this year and acclimating himself to the outside world, both Landen and Olivia came down with a cold the first week of preschool. Luckily, it took just a little more than a week for both of them to get over it. Olivia is on her 3 week antibiotic to treat the staph from her last culture so thankfully her cold didn't develop into an infection. She had a more difficult time with it; spiking a high fever, vomiting a few times because of the drainage mixed with added nebulizer/vest treatments, all which reiterated to me that a "simple cold" isn't that for Olivia. Thankfully though after a week she was back to her normal spitfire self.

As fall settles upon us, we have been enjoying the cooler weather and beautiful fall colors. We have enjoyed seeing the fall leaves change on our nightly bike rides and both kids are quick to point out the changing scenery. Olivia points to the trees and says "yuck" and we're not quite sure why? As Jeff and I have been finishing up some outdoor projects before winter sets in, the kids have found many outdoor activities to keep them occupied  along with "helping" us. In the coming weeks we will be adventuring out to the pumpkin patch and apple orchard for some fall fun and this next weekend we will be celebrating Olivia's 2nd birthday. As I was filling out entries in her baby book today, I was again made aware of how quickly the time has gone by. Reminiscing on the beginning of Olivia's journey and where's she's at today nearly 2 years later continues to amaze me in all that she overcame so quickly and the bubbling little lady she is today, full of energy and so far without a care in the world. I've also realized how much we've all grown and changed over the past 2 years and I find myself very proud of where we all are today as a family. My how the time flies and how quickly life can take unexpected turns! 

On Sunday, October 23rd at 1:00 pm is the 4th annual U of M Breathe Easy 5k for Cystic Fibrosis. The cost is $15 to walk/run when you register as a member of Team Olivia on or before 10/22/2011. More information and to register can be found at: