Intro.

Hello everyone out there in this crazy blogging world! While I follow a few blogs, (dare I say almost religiously), I have never composed one myself. So here goes my first entry...my introduction, explanation, my inspiration, my random collection of thoughts, if you will.

It occurred to me the other morning as I was putting on one of  my Great Strides shirts, that last year at this time I was about 8 months pregnant with our second child.We were told she'd be another girl, although I would hear from friends, co-workers, even strangers, how it was definitely a boy! They could just tell by how I was carrying. As ridiculous as it all was, it had me wondering, which (back to my point) was my biggest worry during my pregnancy. Last year, 11 months ago even, Cystic Fibrosis was not a part of my life. It honestly was a foreign word to me, to my husband and to the majority of our family.If  I remembered correctly from Nursing school, it was some horrible disease that prevents people from breathing like "normal" people. We barely touched on the topic, in fact I think it was just covered under the "miscellaneous diseases" in class. A year ago I knew no one with Cystic Fibrosis, nor did I know that there would be people already in our lives that would help make an impact in our daughter's care and well-being. As I said, a year ago CF was foreign to me. Today CF is part of our daily lives. It is one of the first things I think of every morning, and one of the heaviest topics on my mind daily. Not because I am overcome with sorrow, or because it is something I mourn all day long, but because it is just our new life. Cystic Fibrosis is our daily routine, our new "normal", it has influenced how we have adapted our family life. However, one of the most important things Ive been told time and time again is NOT to let CF define who our child is. So where's the happy medium? How does something have such a huge impact on one's life, and yet we are encouraged to try to keep our child as normal as possible? It is a hard thing to balance, and is something my husband and I have not mastered in these 10 short months.  This brings me to the reason and motivation behind this blog.  We aren't necessarily looking for any particular kind of  advice, comments, or thoughts but all are welcome. We are not looking for sympathy or praise either.The reason for this blog is simply to share our story, and in the process help ourselves and hopefully other people in similar situations.

Our story begins on September 23, 2011.  I remember feeling nervous and excited for our new arrival.  Excited to see our new baby and nervous about adjusting to life with two kids under 2. After 14 hours of  labor, our precious girl was born. Her arrival came without any major complications, but because of a slight complication with me, we had a 3 day stay in the hospital. Sunday afternoon daddy and big sister Ava came to pick us up and our happy little family was on our way! ( minus  Andy's daughter,Kylie)
Fast forward to the following Monday, Oct. 3, 2011. Violet was 10 days old, perfect in our eyes. Didn't cry much, just slept and nursed as expected. No coughing, no congestion, nothing that would make us think something was wrong. That morning was Andy's 1st day back to work, Ava was at my parents' and Violet was asleep in her bouncy seat as I took a shower. When I got dressed I saw I had a voicemail from our pediatrician, he said something was wrong with the newborn screen results and I needed to call him, or something like that. All I heard was " something wrong" and I think I stopped listening from there.I felt like someone punched me in the gut, I immediately called and they put me on hold to interrupt Dr. Sutter and get him on the phone right away. His words will forever be etched in my brain...."Violet's newborn screen revealed she had 2 CFTR genes, suggesting Cystic Fibrosis and Id like you to call the Peds. Pulmonary Clinic right away" Oh, ok, SUGGESTING?? So then it's not for sure I kept asking myself?
So I called Andy and explained it all to him, cut to a few hours later we were sitting in the clinic office, after our 10 day old endured a sweat test, a chest X-Ray and more blood work. It was quite a day to say the least. Lots of crying, lots of holding our baby tightly, lots of questions, lots of information thrown at us, and lots of people introducing themselves ( a doctor, 2 nurses, a dietitian, a respiratory therapist and a social worker. Wow...What a day!
So our initial reaction was sadness, but shortly after came the anger.....and with that also came telling our families and close friends, which once again brought more tears!
It took a few weeks of crying, and grieving to realize it cold be worse. We decided to stop reading stuff on the Internet, and instead educate ourselves the best we could. Our team at the clinic had overloaded us with books and videos and pamphlets, why not use them? So we did, and we began suggesting our families do the same, and it starting bringing some relief into our minds.

Now we are fortunate to know that one of the genes our daughter has is very rare, and I mean very rare. Of the 30 some thousand people who have CF, less then 1500 people have this specific gene. And this gene ( G551D) just happens to be the gene targeted for the new drug recently approved for people ages 6 and up. This gives us HOPE...something positive and promising! I've had the opportunity to actually meet some adults who've been on the trials for this drug for years, and hear their stories and it makes me so excited and relieved...and somehow I am still apprehensive. As I said this drug is currently only approved for kids age 6 and over. So that is more then 5 years away for her. Until then we just need to keep her lungs as healthy as possible, no big deal.......Right??

My husband and I will  post updates and continue our story, in a more abbreviated version, in the following days. I promise it will not always be this long! We thank you though for taking the time to read about our baby girl, and hope you will continue to follow us! Our end goal is now and will always be Victory for Violet :)