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.