Sweet & Sour Summer Saga

We are weeks away from the start of a new school year, and this year it means some big changes for Leah. She is moving from the elementary school to an intermediate school, which means changing classrooms, multiple teachers, changing in a locker room for PE, and hallway lockers!  A bit nervous we are...  But we have begun communication with her new school and are confident we will be able to make this a smooth transition for Leah.

BUT, before we move on... we want to express our gratitude to the AMAZING teachers and staff at Heritage Trail.  They made Leah's school experience a positive, fun, supportive, and overall GREAT experience.  To close the year, the graduating fourth graders paraded through the hallways of the school, being cheered on by all the younger students, sending them off on the very last day of school.  This brought tears to the eyes of just about every fourth grader, boys and girls alike, along with many of the younger kids.  It was an emotional day for all.  But it goes to show how much the kids love their school and will miss it!  Our kiddos are prepared and ready to tackle this next stage of life.   THANK YOU Troy Heritage Trail!  We love you and are so thankful to all you have done for Leah and our family!  

Great Strides 2017

Every year, this day reminds us that we are not in this fight alone.  Neither the brisk weather nor the puddles on the path stopped us from being there, representing Leah, and joining with the other teams supporting their CF warriors!  We are so thankful to see our community support us and walk with us as we seek to raise crucial funds to support the amazing efforts that the CFF is doing to find a cure for CF!  It means the world to us!  Thank you!

If you would like to make a donation to support our efforts, it's not too late.  Please go to our Great Strides homepage.  Thank you!

If you are looking for a fun way to show support and raise some money for cystic fibrosis, consider doing this family friendly idea... LEMONS FOR LEAH!!!

Host a lemonade stand, possibly bake some goodies, and help us raise money and awareness for cystic fibrosis.  It doesn't take much to organize, but the rewards are great.  There have already been two LEMONS FOR LEAH this summer.  Who can resist buying a cup of lemonade from those cute faces?!  Especially for a good cause!  We called it a success, especially when we sold all our product! ​ If you decide to do a LEMONS FOR LEAH, let us know and we will do our best to support your efforts and stop by!

Summer adventures

Our travels this summer first took us to Pittsburgh to celebrate Kathy's parents 50th Wedding Anniversary!  Our weekend celebration included going to a Cubs/Pirates game, in which the Cubs won!!  I'm not too sure all the Pirate fans appreciated having our group cheering in their stands, but it was a very fun and enjoyable night for us!  We also had a fabulous celebration dinner at Kathy's sister's home.  It was a great night, dining outside in their beautiful yard, hearing mom and dad share memories of their love story and honoring their marriage that demonstrates their faithful love to one another and our family!  It was a wonderful celebration that will be cherished by all of us. 

We continued our travels as we ventured down to Charleston, South Carolina to visit with Phil's family.  It had been a while since we had been there, so it was really nice to visit with them.  Despite our car breaking down as we drove on the breath-taking Blue Ridge Parkway, leaving us completely at the mercy of some good samaritans who helped us get to the next town... we did enjoy our visit and learned a couple of lessons along the way.

NTM Treatment - Six Month Update

We just passed the six month mark in Leah's NTM treatment.  Leah is in the continuation phase of treatment, which includes three oral antibiotics and one nebulized antibiotic.  We are also doing three vest treatments a day, along with her regular inhaled and nebulized breathing treatments.  While it is not as intense as the initial IV antibiotic phase, it requires quite a bit of time each day, which is not fun for Leah.  Although Leah continues to be a trooper about her treatments, there is no hiding the fact that it is not easy on her.  But even with all the treatments, she doesn't let it slow her down.  

Unfortunately, she is still culturing the NTM.  We have not been able to get the infection out of her body.  While we have seen some clinical improvements, the chances of getting a culture conversion during this part of her treatment is not likely.  Although we knew from the beginning that the course of treatment was expected to be around 15-18 months, we have to consider whether it is time to stop.  We have been in conversation with her doctor concerning whether she is still benefiting from these medications or if she has reached her full benefit at this point, as well as wondering if we are increasing her resistance to these medications if they are not benefiting her anymore.  Legitimate questions with no known or definite answers. 
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At this point, we are continuing the current course of treatment as both her weight and pulmonary function were down a bit at her clinic visit last week.  Although she was so worried that doctor was going to admit her to the hospital, I'm not sure we got an accurate PFT (Pulmonary Function Test).  Either way, we are focusing on her diet and airway clearance techniques (ACT) to try to help her improve before we go back for a 2 week recheck.  Please pray for direction and guidance as we make decisions concerning her treatment plan. Pray also for Leah to be willing to fine tune her ACT while doing her treatments.  We want to see her grow in her active participation while doing these.

Last week, her auditory testing continued to show some decline.  While it still isn't impacting her ability to hear language sounds, this is concerning to us.  This hearing loss is most likely still a side effect from when she was on the IV antibiotics, as hearing loss can continue even after a medication is stopped.  Please pray that there will be no further decline and even some recovery as it is unknown whether this hearing loss is permanent.