Like every parent with a child with CH, I used to worry about development milestones. We all know how important they are when they are babies. I used to worry about Bug's teeth--they were so late coming in. And she didn't walk until 15 months. But that girl had a love for books long before then.
Bug used to spend hours sitting with those bathtub (plastic) books in her hands looking at the pictures. She loved when we'd read to her and even learned to pull up on the bookcase. She was trying to reach the books we didn't allow her to play with.
Now at 8 she reads above grade-level and we have a hard time finding books that are age appropriate and challenging. Don't get me wrong, we still watch her development closely. But I feel like we have to worry less about it the older she gets.
What I'm saying is that it does get better.