So HI ALL!!!!!! It has been awhile since I have been on here so basically Emmie is getting bigger and stronger and thriving! Love to hear that! She is up to the 95th percentile in weight~!!!!!!! However she is still at the 15th percentile for height. Lol aparently she doesn't have the best genes for height. And now comes the excuse the language bitchy part of this post. I am sick of the FDA mandating what medications our children can and can not take. Emmie used to be on Ultrase MT~12's and we were loving it we never had any problems with her belly, NEVER. When the FDA decided to stick their noses in this stuff and say they are only approving certain enzymes Emmie's belly got all screwed up. We have attempted multiple doses of Creon, and now are attempting multiple doses of Zenpep and still have belly issues. I am sick of it. I WANT ULTRASE BACK. This is ridiculous. Why is CF care so much different from state to state? Why do our children have to suffer because the FDA doesn't want to deal with it? I am soooooooo frustrated. I think I am done venting for the moment but I am sure I will be back soon because I need to start getting this off my chest. It is building and building and I gotta get it out!
Melissa, Jason and Emmie too!