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.