Today is a day that normally would find us surrounded by family and friends walking to raise money to find a cure for cystic fibrosis.
However, like many other special events, the South Suburban GREAT STRIDES walk is cancelled, possibly postponed (date TBA) due to the COVID-19 pandemic. But there will be a virtual event on June 5th to celebrate the CF Foundation's 65th anniversary!
What doesn't change is the need to find a cure for cystic fibrosis!! While much progress has been made in finding new treatments that help manage this disease, no cure has been found.
So, to that effort, we invite you to join us in our goal to find a cure. We know these are difficult times, but if you are able, would you please consider giving a donation to find a cure for cystic fibrosis.
Health update on Leah
Leah started on the new CF modulator medication, Trikafta, in December. This is the first medication that we have noticed marked improvements for Leah! Her cough has been minimal, and we have been able to scale back her breathing and vest treatments from three times a day to two times a day.
Because of COVID, instead of going in for our monthly CF clinic visits, we have been doing video visits with doctor and having a home health nurse come to our home to flush Leah's port and draw labs.
Although we followed the intensive treatment protocol to eradicate MRSA, Leah is still culturing MRSA, along with the NTM.
Leah is almost weaned from the steroid that she started on during her last hospitalization in October when she was running those high fevers. While we still have no definitive answer as to what caused those fevers, her body responded positively to the steroids. Doctor started her on high dose ibuprofen to help her body adjust as she was weaned off the steroid. Hopefully she will be fully weaned with no fever relapse by the end of this month.
Dealing with COVID-19
I'm pretty sure that none of us could have anticipated a global pandemic shutting down the world this year. Thankfully, our family has been healthy so far! With two daughters suffering from chronic diseases, we have embraced what it means to shelter at home during this time. Like you, we have needed to adjust to this new way of doing life.
We have discovered Instacart and Walmart pick up (which requires planning ahead but is so worth it!). I don't think I'm going back, even when things get back to normal.
We have mourned the loss of many special events/activities, especially as Hannah is finishing her senior year of high school - musical, senior awards, last concerts, award/end of the year banquets, prom, and graduation, with all events being cancelled, postponed, or moved virtually.
BUT... we have also discovered some blessings like having extra time as a family, especially as Hannah is getting ready to go to college next year. We have been enjoying walks, playing games, and watching probably too many movies. But we are doing it together at a slower pace than we usually have.
Hang in there friends! God is in control always! You can put your trust in Him and embrace each day! Sending you our love!!
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.