I cannot believe it has been over a year since my last post. I planned on writing a blog on Lily's 1 year Kalydeco anniversary but we have just been so busy living life, I just didn't get around to it.
I decided it would be a good time to update now though. :)
It's been 1 1/2 years on the wonderful miracle pill, Kalydeco. And I have never been happier for my little girl. She is about 37lbs, has some meat on her bones, and CAN BREATHE!!! She only missed 4 days of school during her 1st grade year, which was unbelievable. Those 4 days she missed weren't even CF related!! Two were for pink eye & the other two were just checkup doctor appts! Lily was able to enjoy the 1st grade with all of her friends at school. Our summer was short but definitely sweet. We went to Kentucky Kingdom, swam at Hurricane Bay, and just enjoyed our time together! This school year has now begun & Lily is doing great in the 2nd grade!
This drug is truly a miracle. Looking back at pictures of Lily in late 2012 are disturbing. How skinny & sick she looked... Ugh! Makes me so sad everytime I think back to those days. How blessed we are to have been given this second chance at life!
Even with Kalydeco, we still do Lily's vest twice a day along with two breathing treatments; albuterol & pulmozyme. Lily still takes Creon before meals, an allergy medicine & vitamins at night, and still has her feeding tube for over night feeds & supplimental feedings during the day for extra calories. For the first 10 days of every month she takes a antibiotic just for a boost. Before Kalydeco, she took hypertonic saline, reglan, prevacid, & miralax as well but have since stopped because they are just unneeded now!
Lily's breathing is one of the huge changes I have noticed since on K. When we lay in bed together, I hear strong deep breaths coming from her lungs. Before, it was just like quick belly breathing. She can jump on her trampoline & just run around without wearing herself out so quickly. From time to time she has a coughing fit, & gets some gunk up out of her lungs but it is NOTHING like before. :)
I want to start documenting these daily miracles more so I'm going to be keeping up with this blog again. Stay tuned!
I decided it would be a good time to update now though. :)
It's been 1 1/2 years on the wonderful miracle pill, Kalydeco. And I have never been happier for my little girl. She is about 37lbs, has some meat on her bones, and CAN BREATHE!!! She only missed 4 days of school during her 1st grade year, which was unbelievable. Those 4 days she missed weren't even CF related!! Two were for pink eye & the other two were just checkup doctor appts! Lily was able to enjoy the 1st grade with all of her friends at school. Our summer was short but definitely sweet. We went to Kentucky Kingdom, swam at Hurricane Bay, and just enjoyed our time together! This school year has now begun & Lily is doing great in the 2nd grade!
This drug is truly a miracle. Looking back at pictures of Lily in late 2012 are disturbing. How skinny & sick she looked... Ugh! Makes me so sad everytime I think back to those days. How blessed we are to have been given this second chance at life!
Even with Kalydeco, we still do Lily's vest twice a day along with two breathing treatments; albuterol & pulmozyme. Lily still takes Creon before meals, an allergy medicine & vitamins at night, and still has her feeding tube for over night feeds & supplimental feedings during the day for extra calories. For the first 10 days of every month she takes a antibiotic just for a boost. Before Kalydeco, she took hypertonic saline, reglan, prevacid, & miralax as well but have since stopped because they are just unneeded now!
Lily's breathing is one of the huge changes I have noticed since on K. When we lay in bed together, I hear strong deep breaths coming from her lungs. Before, it was just like quick belly breathing. She can jump on her trampoline & just run around without wearing herself out so quickly. From time to time she has a coughing fit, & gets some gunk up out of her lungs but it is NOTHING like before. :)
I want to start documenting these daily miracles more so I'm going to be keeping up with this blog again. Stay tuned!