pachygyria

My grandson was diagnosed with pachygyria after an MRI was done after changing pedies that would not address our concerns.  when he was unable to hold his head upright on his own, did not sit up or even try, we grew concerned but kept telling ourselves that he was fine; especially when the doctor would reassure us that we were overconcerned.  We were initially told by a developmental pedie that he would be MR and would never be a scientist or the like.  we were of course devestated.  after much prayer and the realization that it was always in God's plan for him to be the way he is and who he is, and that choices we make today will determine what he can and cant do, well...we have taken things into our own hands.  he now has physical therapy, occupational therapy, and speech therapy.  He is very happy, holds his head up and has the natural instincts to catch himself if falling.  he is or will be 2 this weekend, he still int walking due to poor muscle tone in his ankles, but can scoot on his rearend wherever he wants to go.  his therapists say that he is doing great!!!  while we work with what we have there is still so much to be answered and learned.  we do not know of anyone else with this condition and find little on the internet.  we have yet to find an optomistic neurologist, or one with concern to be tactful when discussing this with us.  well, i just want to know this condition inside and out so that i do not leave one stone unturned to better my grandsons life.  concerned mimi