The milestone that we're most excited to reach (besides his first birthday) is having his NG tube removed. We've been on it for about a month and a half because Alexander is a lazy eater - food just doesn't interest him. On the NG tube he has gained a lot of weight, and we're moving closer to our 50th percentile goal. For the past week we've had real success with Alexander hitting his daily goal all on his own, without the pump! He is finally showing active interest in eating, so we're just waiting to hit the milestone of the day it is removed.
The most helpful resource on this journey has been the CF clinic. They are always ready to help us and do everything that they can to put our minds at ease. Whenever we need to come up with a plan, for weight gain or for fighting an infection, they're on top of it.
Our friends and family have also been very helpful to us. We're all learning about this disease together, and they help us whenever we need them.
If you're a parent starting out as we did, keep your head up. Love your baby, and do everything you can to help him fight his disease. No matter what happens, he's still your baby, and nothing will ever change that!