#1 - I am not as much of a blogger as I was hoping to be.
#2 - CF can catch you off guard.
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
Leah's Front Line had an amazing 2013. We had some really neat and fun ways to raise awareness and money for cystic fibrosis.
Altogether, our team raised $15,000 nationally!!
Thank you for being part of our lives and joining us in our efforts to find a cure!!