Three things I discovered in 2013
#1 - I am not as much of a blogger as I was hoping to be.
That's about all I have to say on that subject.
#2 - CF can catch you off guard.
I have heard some of my CF mom friends talk about how CF is like an invisible disease because our kids can look so healthy on the outside, yet they are fighting this terrible disease on the inside. The truth of this reality became real to us this past year.
In June, we had Leah's annual clinic visit. We went early to do her chest x-ray and lab work, then after lunch, we had her Pulmonary Function Test and our clinic visit with her CF care team.
Leah looked great! We were flying through our clinic visit with all of the team. Everyone was pleased with Leah - she had been gaining weight (something we were focusing on), her lungs sounded good, and she had no cough. Overall, she looked and sounded healthy.
As doctor was walking out of the room, we asked if he had a chance to look at her x-ray. He had all of us follow him to the computer to pull them up for him to review. He took one look and said, "We are not doing enough." He sent Leah back to the room and discussed with us what he was seeing. He showed us the x-rays and explained to us that there was surprising change from last year. There were pockets of damage in her lower right lobe and spots on her upper left. We were very disappointed to see and hear this, as was doctor.
It almost didn't make sense to us. She seemed like she was doing fine on the outside. We were feeling so confident that we were going to get a good report that it really shook us up to realize that her lungs were being affected as much as they were.
We added a new treatment to combat this. Leah started on hypertonic saline (a nebulized medication) in addition to her other treatments. This helps thin the mucus by hydrating the airways. She also started on Advair (an inhaled medication) as doctor can see a significant change in her pulmonary function test before she takes a bronchodilator treatment and after. He says this indicates that she also has a touch of asthma.
CF had caught us off guard and fooled us. On the outside, Leah looked fantastic, but inside, her lungs were already showing signs of this lung disease and the damage that occurs from it. After being on the new treatments, a follow up x-ray showed some improvements in her lungs. But there are no clear answers on whether this damage is permanent or can be reversed. So, we keep praying and doing everything we can to control and protect Leah's lungs from further damage.
#3 - Our team rocked 2013
I love seeing Leah's Front Line in action... whether it is people supporting us by making a donation, attending events, entering a raffle, walking with us, helping us raise money, cutting hair, hosting a garage sale, donating gently used items, buying refreshments at movie night, volunteering at the races, or selling delicious lemonade. It takes all of us working together! And together, we are making a difference!
Thank you for being part of our lives and joining us in our efforts to find a cure!!
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We are truly blessed. We want this to be a place we can share updates on how Leah is doing with her CF. As well as a place to share our hopes, dreams, and prayer requests. Thank you for loving and supporting Leah as she fights everyday to add more tomorrows.