Life in the world of schizencephaly

Noah's femur is healing Well according to his Dr's however from looking at his X-ray myself and showing to a few friends all in the medical field there seems to be an agreement that to us it simply does no appear to be set right.
I have to question at this point if it was set this way because the Dr's felt like this is as good as Noah's life will be or if his leg simply could not have tolerated any manipulation. At any rate I see a very long road ahead for my little man and I've decided (if He is able to travel considering How it was set) to. Get a second and third opinion.
I am disappointed to say the least. I sometimes look at Noah and question why He was chosen to have to live this way. Not just that but How much can his body handle. In just this year we've been through five surgeries. It's got to be as wearing to his body as it is to my heart.
I wonder How much longer I get to see him smile through all the pain and I worry what his future is going to be. He is already so fragile with bone issues,scoliosis and a dislocated hip.
I do have hope in myself as a parent because I truly feel the answers do not lie in the medical professionals but in my own heart. After all it was I that chose to fight for treatment and prevention of the scoliosis. I was the one to show concerns for his weight loss and I was the one that insisted to have bloodwork and X-ray to see the bone loss that not one Dr thought to look for.
For that reason and only that I know that as long as I am alive He has the best chance in this life. Because if it were left in the hands of the medical world He would have been doomed long ago.
So we keep fighting. It feels sometimes this battle is never ending. We have been at it since Noah was diagnosed inutero and I was relentless in getting answers and I fear that is what I will have to continue doing.
If there was a plan to all this I still don't understand it. There is nothing more frightening and difficult than to know your the only one fighting for your child. At the end of the day even through the smiles and hugs the fact remains worry fills my heart much more than anything these last few years. And it is my silent friend each night before I kiss him to sleep.