Well it's been 1 month & 5 days on Kalydeco. I am so proud to report that Lily is doing GREAT.
Today we went to the CF clinic. (We've been going every 2 weeks to make sure there's no decline in health.) Well it was an all around awesome appointment :) Her oxygen level was at 95, which has remained steady since being out of the hospital. She is still getting the hang of doing PFT's but today they were 64%! 2 weeks ago it was 57, 2 weeks before that was 47, and 2 weeks before that before Kalydeco it was 20-30ish! Amazing! The most amazing news was when she stepped on the scale...... 33.4 pounds! We were so happy!!!! This is the most she has EVER weighed!
D.r Eid has been there with us since day one. He knows Lily like the back of his hand. I can honestly say I have never seen him so happy & excited for Lily as he was today. :)
I had always heard of Kalydeco working miracles, I just still can't believe it's working miracles for us. We are so blessed.
More miracles & happy times to come.... Just wait :)
Today we went to the CF clinic. (We've been going every 2 weeks to make sure there's no decline in health.) Well it was an all around awesome appointment :) Her oxygen level was at 95, which has remained steady since being out of the hospital. She is still getting the hang of doing PFT's but today they were 64%! 2 weeks ago it was 57, 2 weeks before that was 47, and 2 weeks before that before Kalydeco it was 20-30ish! Amazing! The most amazing news was when she stepped on the scale...... 33.4 pounds! We were so happy!!!! This is the most she has EVER weighed!
D.r Eid has been there with us since day one. He knows Lily like the back of his hand. I can honestly say I have never seen him so happy & excited for Lily as he was today. :)
I had always heard of Kalydeco working miracles, I just still can't believe it's working miracles for us. We are so blessed.
More miracles & happy times to come.... Just wait :)
One month on Kalydeco:
Age: 5 years 8 months
Weight: 33.4 lbs
Height: 40 1/2 inches