So on Wednesday, Lily went home from school early with a low grade fever. I was nervous she caught something from school. Her highest fever that day was 101.1 & within a few hours it was back down after giving her Tylenol. I kept her home from school yesterday just to be sure. She had no fevers until around 4pm after taking a nap. It was a pretty low grade fever so I chose not to give her anything to let it go down on its own. Sure enough it went down within a few hours & has been fine since. These fevers don't seem to bother her any.
She's been having some cold-like symptoms but I have read that is a side effect from Kalydeco. She's been sneezy with a running nose but I'm trying to stay positive. She went from not coughing hardly at all the first 10 days on Kalydeco, to coughing a little bit more now. (but nothing like before Kalydeco!) Hoping that this is just Kalydeco running its course.
Other than that, she's still been eating great and her oxygen level has been staying pretty high. 95-98ish which is amazing for her! (I bought a pulse oximeter so I can check her oxygen sats whenever!)
I took a picture of her on her first day of Kalydeco with just her panties on & then again just 13 days later and I cannot believe the difference in her body!!! I probably won't post these pictures anytime soon, just because its a bit disturbing how skinny she is and she's pretty much nakey :) But maybe one day, once she's all big & healthy I will post them just to show how far we've come! That would be amazing :)
Please keep her in your prayers that these fevers & cold-like symptoms are just Kalydeco doing its job. Her health obviously comes first, before going to school so I'm going to talk with her CF dr on Tuesday at her appointment to see about what we should do about school.
P.S. This years *Team Lily* shirts are being made as we speak so when I get them in, I will be posting all about how to order them! The website to that is www.teamlily.bigcartel.com! Thanks!
She's been having some cold-like symptoms but I have read that is a side effect from Kalydeco. She's been sneezy with a running nose but I'm trying to stay positive. She went from not coughing hardly at all the first 10 days on Kalydeco, to coughing a little bit more now. (but nothing like before Kalydeco!) Hoping that this is just Kalydeco running its course.
Other than that, she's still been eating great and her oxygen level has been staying pretty high. 95-98ish which is amazing for her! (I bought a pulse oximeter so I can check her oxygen sats whenever!)
I took a picture of her on her first day of Kalydeco with just her panties on & then again just 13 days later and I cannot believe the difference in her body!!! I probably won't post these pictures anytime soon, just because its a bit disturbing how skinny she is and she's pretty much nakey :) But maybe one day, once she's all big & healthy I will post them just to show how far we've come! That would be amazing :)
Please keep her in your prayers that these fevers & cold-like symptoms are just Kalydeco doing its job. Her health obviously comes first, before going to school so I'm going to talk with her CF dr on Tuesday at her appointment to see about what we should do about school.
P.S. This years *Team Lily* shirts are being made as we speak so when I get them in, I will be posting all about how to order them! The website to that is www.teamlily.bigcartel.com! Thanks!