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

Week 24

Well, we made it. This isn't the end, and it's sad for us. We had to turn in our meds. Fawkes will be off them until next Friday when we go back and start this whole thing over.

We left for Philly on Sunday night, stopped for dinner in Columbia, got to the hotel, did treatment, and went to bed. The next morning, while Fawkes was doing his treatment, I tried to squeeze in a little work because I have a huge review coming up, and people were waiting on me to send out the information. We left for the hospital after grabbing a quick breakfast at the hotel.

We did an LCI test (that one where he has to sit still for 5 minutes and not move with a mask on his mouth) a small and impossible feat for a 3 year old. I swear, people that want these tests have no idea how hard these set-ups are. Anyway, then it was to the optometrist to make sure the meds didn't effect his vision. I'm not sure why, but man that eye place in the hospital is busy. We had an appointment but it took TWO HOURS!!!  Luckily, I had my mommy bag of tricks and some sticker activities, Hudson got us snacks, and in the room they had Monsters Inc. Also, I had to get a urine sample while we waited which is always fun.

Then we did some other expected things, gave our stool sample to the nurse, did an EKG (Fawkes likes the stickers now), and the skateboarder breathing test.

We ate some lunch and then we had to do the dreaded sweat test. W e played Connect 4 while it was collecting the sweat which you can see in the picture on his arm. (You can learn more about this test on Screening and Day 1 posts).

We did the dreaded bloodwork, and he got his surprise which was Cootie. He saw it on his favorite You Tube, Ryan's Toys Review, and I loved that game as a kid, so I did what any mom would, ordered it off Amazon. He loves building the Cooties.

We'll be back to Philly next week for the safety follow-up.

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