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
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
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!!