Hi. I haven't heard of this condition before, but I understand how you feel about bubs not reaching milestones. DD has a condition where she has limited movement in her right arm. We've been doing physio since she was born. She never crawled and started walking a 15 months.
It can be hard watching then try so hard to do things other kids do easily, but it's such a great feeling and so speacial when they acheive their goals. And if rambling about it helps you get through it then ramble away!