As we complete week 8 of the intensive phase of Leah's NTM treatment, we wanted to give you an update on how she is doing...
Overall, Leah is doing great! Her body continues to handle the medication well. Thankfully, she has not had any significant side effects thus far. The treatments are not slowing her down at all, in fact, she seems to be doing better than when we began. Her cough is minimum, she has been fever free, her pulmonary function is a bit higher than it had been Oct-Dec, and overall she is feeling better. At her last visit with doctor, he didn't hear any crackles in her lungs!! That was super exciting to hear. Crackles in the lungs indicate infection, and we haven't had a clear sounding lung report from doctor in a long, long time.
Even though we are seeing good results clinically, her first culture taken at 4 weeks continued to test positive for the mycobacterium abscessus. So the stubborn infection is still hanging on. Her next culture will be taken this Tuesday. We are hoping and praying to see a culture conversion, which would be a negative culture not showing any of the m. abscessus growing in it.
She is receiving home bound instruction through a teacher from her school. This has been helpful in keeping her caught up with her school work while giving us time to take care of Leah's treatments, doctor visits, lab work, and tests. Plus, it has helped keep her healthy and away from all those icky sickness bugs that have been very prevalent around here lately.
Leah is our strong girl and she is a fighter! We have been blown away by the amazing support she has received as she fights this infection. So many have reached out and showered Leah with their love and support! Here is a sampling of the support that she has received...
Leah's friends from Awana sent this picture to cheer her on, along with a big manila envelope filled with valentines for her.
Leah's aunt made this amazing piece of art with Fight Song written out... Love it!
This February, Leah was completely showered with gifts and cards from the amazing ladies of Epsilon Sigma Alpha, a service and leadership sorority at Illinois State University. This kind and generous group of 300 incredible women gathered three overflowing bags of goodies (coloring books, games, stuffed animals, and more) for Leah. They also sent words of encouragement and support through a huge pile of notes/cards letting Leah know that she is loved and supported by this awesome group of women. Reading over the cards made our hearts full of joy and happiness! Thank you, ladies! You made our day better through your extravagant kindness.
Our church has loved on us in so many ways - prayers, hugs, gift cards/money, and even brand new lofts for our girls made by one incredibly generous and talented family! We are so very thankful to be part of this loving and supportive community!
Thank You! We appreciate all the prayers and support everyone has shown Leah and our family! Thank you!
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.