Can someone please lend me a crystal ball?

Nico has been home for over 7 months now.
I'd love to confirm that the roller-coaster ends when you leave the NICU/SCN bubble but unfortunately, for us this was not the case. . You know hen the roller coaster has done one lap, the guy asks "Anyone want to get off before the next lap?" He ignored our shouts of "Let us off, we've had enough!"
We have been in and out of hospital about 6 times in as many months for Nico's chronic irritability. The first 3 months or so he slept great at night and only woke for feeds. In the last 4 months tho I can count the times I (and he) have had more than 2 straight hours sleep on one hand. He got to a point of screaming, not crying, screaming, 9 hours a day. At worst it has been 18 hours, only pausing to cat nap for 30 minutes at a time. In a word: unmanageable. He goes completely rigid whenever he screams and it is almost impossible not to read "pain". So we take him to the hospital for answers:
First: Bronchiolitis.
Next: No answer. "Must just be behavioural but he is failing to thrive (500g weight gain in 3 months) so we will look into that" and his nasal gastric tube was put in after 3 months without it. He started to put on weight and was sent home, irritability forgotten
Then: "Brain irritability, it happens with premmies, he will grow out of it"
etc etc.
It has been so frustrating and saddening to see your little fighter, someone who has already worked so hard to stay in the world, struggling with something he can't communicate to you.
We have been seeing various specialists, respiratory, gastro-enterology and scariest of all specialist areas: neurology.
A few months in, during one of our first return visits to the hospital, the neurologist came by in case it was seizures. Luckily he happened to see one of these rigid screaming episodes and categorically said it was NOT seizures. I was happy and not surprised. He asked me as a mother, what my instincts said. Unrelated to the screaming, I told him was worried about cerebral palsy purely because I had just met 3 premmies with CP and knew that up to 25% of micro premmies developed this. I wasn't really prepared for his response of "Well, with the history, all we can do is put it together like a story, and in this case, knowing he had a brain haemorrhage, seeing some things like how his hands are so clenched and he doesn't really make controlled movements, the pieces fit. There is no test we can do, it will just be a wait-and-see how his development goes over the next year."
What do you do with that? Prepare for the worst, hope for the best. The prepare for the worst part, I can do. Research research research. What do I get? Nothing.
He is 14 months old as I write. 10 months corrected. He smiles and gurgles. He has the best laugh in the world. It's a real chuckle and the moment it starts, the 2 hours of screaming that may have just left you in tears yourself, is instantly forgotten. It makes everything right again.
Apart from that, he hasnt met any milestones. The only planned movement he makes is swatting the bottle away when he is being fed. There is no reaching, rolling or putting things to his mouth He has just gotten a tooth but since he doesn't have the know-how to hold something and put it to his mouth, teethers are pointless. I remember telling the social worker in the early NICU days, maybe due to the brain haemorrhage or when he got resussed, i cant remember, that I couldn't picture how we would cope with a toddler and a major disability if it Nico's prematurity were to cause him problems. Her answer was "But you would just evolve with him" and I didnt really know what she meant. I do now. Cerebral Palsy is now treated as a given. There was not a specific time when the tentative "yes it is a possibility" changed to "Yes, it is confirmed" , it just.. evolved.
Cerebral palsy doesn't really have a definition. The term cerebral palsy is completely useless to a parent wanting to know what life holds for their child. Cerebral palsy, as a term, SUX.
All i got from god only knows how many hours of reading was that he may not be able control his hand very well so writing may be messy - OR - he may never be able to walk, speak, use his arms or hands or any motor skills like that. How's that for a sliding scale of what the future might be.