Our grandson is 10 and starting 5th grade this fall. His favorite subject is math. He keeps up with his friends on the computer and occasionally hangs out with them outdoors, masked and socially distanced, and spends a lot of time with his 5-year-old sister who worships him. His activities are all remote, too: children’s musical theater, piano and guitar lessons, art and improv classes. He reads lots of books (his favorites are cool graphic novels), loves making elaborate Lego creations and piecing together complex jigsaw puzzles. He plays in two baseball and two soccer teams (he's on the this summer's All-Star Little League team) and will continue playing in these same leagues in the 2021-22 season.
He remains "healthy" because his parents are 150% diligent, making sure he continues to take over 25 treatments each day (multiple enzymes, antibiotics, inhaled nebulizer treatments, breathing treatments & airway clearance therapies, basic nutrition through a port in his tummy).
But we still worry. What if this year, he catches a cold he can't shake and his lung function drops and doesn't recover? What if this is the year where he catches a more serious CF germ and has to spend weeks in the hospital and months in extra treatment? There is progress in research, but still no treatment or cure for his rare mutation.
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