Today was Lily's CF clinic checkup. They want to see her every 2 weeks to make sure she is staying well.
So... It went great! She now weighs 31 1/2 lbs. That means she is up about 2 1/2 lbs since Kalydeco start date... which was 19 days ago! How amazing right?! Her pulse ox was 95. She just started PFT's a few months ago after being afraid to try them for some reason. Her first couple try's a couple months ago were really low, around the 20 & 30's. It was 47% two weeks ago, and today was 57%. Although I know a part of it is her actually getting better at doing them, but I'm pretty positive Kalydeco has a lot to do with that number going up too! She is still coughing a little bit more than when she started but we think its just Kalydeco turning her hard old mucus, to a more runnier liquid & it's trying to get out.
We discussed school & came to the conclusion that she should just finish out her kindergarten year doing homeschooling. After going home from school with a fever on Wednesday & not really knowing why she had that fever on & off for 3 days, we felt it was best not to take a chance of her catching anything while at school. I think it was the right desicion even though I would love nothing more than for her to be able to go to school like every other kid her age. Health comes first though & I don't want anything messing up her miracle. I plan to work with her on everything I possibly can so when August rolls around she will be totally ready for the 1st grade. :)
Before her appointment, we went to Kosair to visit Lily's favorite child-life specialist who is moving & will no longer be working at Kosair. She is so bummed but we wish the best for Caitlin & will be keeping in touch :) We also had a bunch of mail waiting for us that came after we left the hospital after her last stay. Thank you so much to everyone who sent pet pictures!! We have so much fun looking at all the pets & reading about them :)
So... It went great! She now weighs 31 1/2 lbs. That means she is up about 2 1/2 lbs since Kalydeco start date... which was 19 days ago! How amazing right?! Her pulse ox was 95. She just started PFT's a few months ago after being afraid to try them for some reason. Her first couple try's a couple months ago were really low, around the 20 & 30's. It was 47% two weeks ago, and today was 57%. Although I know a part of it is her actually getting better at doing them, but I'm pretty positive Kalydeco has a lot to do with that number going up too! She is still coughing a little bit more than when she started but we think its just Kalydeco turning her hard old mucus, to a more runnier liquid & it's trying to get out.
We discussed school & came to the conclusion that she should just finish out her kindergarten year doing homeschooling. After going home from school with a fever on Wednesday & not really knowing why she had that fever on & off for 3 days, we felt it was best not to take a chance of her catching anything while at school. I think it was the right desicion even though I would love nothing more than for her to be able to go to school like every other kid her age. Health comes first though & I don't want anything messing up her miracle. I plan to work with her on everything I possibly can so when August rolls around she will be totally ready for the 1st grade. :)
Before her appointment, we went to Kosair to visit Lily's favorite child-life specialist who is moving & will no longer be working at Kosair. She is so bummed but we wish the best for Caitlin & will be keeping in touch :) We also had a bunch of mail waiting for us that came after we left the hospital after her last stay. Thank you so much to everyone who sent pet pictures!! We have so much fun looking at all the pets & reading about them :)