April 8th... The day we found out that Aspen has Cystic Fibrosis! The day that would forever change the way we view things!

April 8th, 2013.....We will never forget this day. Yes, Lindsey and Chris knew that there was a 25% chance that Aspen would have Cystic Fibrosis but hearing the words..."ASPEN HAS CF" was still hard to hear! 

Many people have asked if Lindsey and Chris knew Aspen might have CF. In one word... yes. 

Lindsey and Chris went to see Dr. Pohl, her OB-GYN, at almost 12 weeks pregnant. Dr. Pohl did the routine blood work that doctors do. After several days, the doctor's office called to say that Lindsey was a "carrier" for CF. No one in our family had CF and honestly, we didn't think too much about it. We learned that approximately 1 in 30 caucasian people are CF carriers. If one person is a carrier and your spouse is not, your baby can ONLY be a carrier but would NOT actually have the disease. The doctor told us the chances that Chris would also be a carrier were 1 in 800,000. With those kind of odds... no one really thought too much about it. After all, it would take BOTH of them being a carrier before Aspen would have a chance of actually having cystic fibrosis.

After a week or so, Dr. Pohl's office called to say that Chris was indeed a carrier for CF. We were shocked. I mean...what are the odds? The doctor's office didn't seem too concerned, so we decided to push it to the back of our minds (everyone except me).  I began researching and reading everything that I could get my hands on. I even read research papers from John Hopkins University. I wanted to know as much as I could about CF. 

At Lindsey's next visit, Dr. Pohl explained that Lindsey had the Delta F508 mutation (the most popular mutation accounting for about 75% of the mutations) and Chris had the 1898+1G mutation (a rare mutation). Dr. Pohl went on to explain that it wasn't too much of a concern because they didn't have the same mutation. I knew this wasn't right and expressed my concerns. I'll never forget him saying that their chance of having a baby with CF was much less than the 25% chance I had read about... in his estimate, their odds were close to ZERO percent because the mutations weren't identical. I knew he was wrong but how do you argue with a doctor? Maybe I had read the wrong information? I didn't want to put a burden on the otherwise "perfect" doctors visit.

Lindsey and Chris pretty much blocked this from their minds. I mean... if a doctor says you have basically a zero percent chance, why should you be too concerned? I, on the other hand, was very concerned. I joined the foundations mailing list in October 2012 so that I could be as educated as possible on this disease. 

I say all of this to say... Read for yourself, research for yourself and insist with your doctor if you don't understand something. Doctors didn't know everything THEN and they don't know everything NOW. God is the one in control and only HE knows all. 

I'll never forget getting the call from the pediatrician... Dr. Hutchins called Lindsey on her cell phone. Lindsey, Chris, Danny, Me and Danielle were all in the room. "ASPEN HAS CYSTIC FIBROSIS." Such a blunt diagnosis from a wonderful doctor. Lindsey handed me the phone as she broke down. I went out into the hall and talked to the doctor and from that moment forward.... Cystic Fibrosis took on a new meaning in our family. It was real. It was reality. It was our new normal. 

"Cystic fibrosis is a disease passed down through families that causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. It is one of the most common chronic lung diseases in children and young adults. It is a life-threatening disorder."

We were sad. We were overwhelmed. Aspen was still in the hospital and having trouble gaining weight and digesting his foods. The doctors ordered a sweat test, a test used to confirm his CF diagnosis. In order to get accurate results... they had to get Aspen to "sweat." They wrapped him up so tight. 

We know that Aspen is a gift from GOD. Psalm 139:13 - "For you created my inmost being; you knit me together in my mother's womb." We also know that God sees and God knows! Nothing catches God off-guard or takes Him by surprise. God, knowing all things beforehand, has reminded us through His Word that He is in control and we are clinging to that promise! 

The next day...April 9, 2013... Chris won Aspen a bat AND a ball from the cafeteria. It was a turning point to realizing that YES, Aspen does have CF but CF does NOT define him or their new family. We began praying that Aspen would surprise and amaze the doctors with his progress!