Well, I talked to the dr today. We are going to try one more medication (Vigabatrin)...has anyone used this before?? We will try it for 1 month...it's not likely to work (beacuse of the malformation) but they want to see him fail 3 drugs plus the Ketogenic Diet.
We will fly to Cleveland in May (which will give us some time to do some fundrasing...5K, bake sales etc. If you have ideas or would like to help let me know!) when we get there we will do a PETscan (again) & overnight EEG...then meet the surgical team! They will remove his Temporal Lobe & Occipital Lobe (which he will have a loss of vision, but hopefully the brain will re-route it's self so he can see). The dr said the surgery is definatly a "Leap of Faith"....becuase you just never know. We don't exactly have a choice since nothing will "fix" his malformation. And, our "Leap of Faith" hasn't ever led us astray!