I'm really sorry to hear that your CP is getting worse, also because of your young age, it also makes me think - when looking back at your medical history - that perhaps surgery should be a last resort for you. My advice for you, would be to try excercise yourself, go to the gym, lift weights, start jogging and get a physio therapist.
I have CP diplegia myself and 6 years ago, i was in the same situation as you. My cp was getting a lot worse, i was really sore, when i tilted my head forward when sitting down, i could feel it all the way down my spine and i would get so nausious, because i was so tight in my body. i could barely tie my own shoelaces, even when sitting down, because my muscles was getting so weak, that i could barely lean forward, and staying there long enough to tie my shoe, was a serious struggle. I couldn't sit up for very long, because of a weak back, and i could barely take a step up for example on the bus or subway. It was bad...
Then i started jogging, lifting weights, during physiotherapy. I lost 16 kgs, i run 5 km faster than average, faster than my friends, and i can compete with other "normal" people who are also in great shape. My life in general is so much easier, i am no longer chasing my next nap, now i'm chasing goals, setting new ones, living life.
My advice to anyone, would be to always try something natural...first.
Let me know what you think.