Back on the Meds!

We went back 2 weeks later after having to return the drug. We could definitely notice a difference not having it observationally. We were more than happy to go back to Philly to start the follow-on trial. That means more tests, more hospital visits, but happily more meds.

We need a lot of stuff at the hospital so we carry a rolly bag. I used this bag when I was pregnant to haul around my stuff for work, but now Fawkes loves to use it at his appointments, which I find so cute and ironic (is it ironic or just situational humor). Whatever it is, he's cute.

It was Mother's day weekend, and so we treated Fawkes to Diggerland. It's like a small Disney World where kids can go and actually operate hydraulic construction equipment. Oh by the way, on mother's day, moms got in free, lucky me!

Ever since Fawkes was born, we struggled to keep him on the weight curve at all. Due to CF causing pancreatic insufficiency, his body has extreme difficulty absorbing nutrients and fat. Throughout his early life we continuously struggled with types of enzymes, amounts, trying to give an infant pills in applesauce with salty milk with orange vitamins. So many challenges. But there was pressure by doctors to get him on the curve with the constant threat of a feeding tube looming above me always. Since we began this trial, you can imagine the tears that poured when we saw these results at our CF doctor appointment:

You can literally see the life changing results we had only supposed observationally. This drug is changing everything for us and was made completely possible by the CF Foundation funding industry to create a cure.

If you find our story compelling, think about donating here to add more tomorrows for Fawkes:  Donate here