Wondering and Waiting.....

We talked to our neurologist on Thursday night to see if any new information was available. She told us that all of the doctors seem to agree that Niklas is in need of surgery ( good news ). They still need to meet on Thursday to present his case because EVERYONE involved needs to agree on the surgery. We won't know for sure about surgery until after the meeting, probably thursday night/friday morning. Also she said that it will be a two part surgery. The hardest part of epilepsy surgery is finding the origin of the seizures. All of the tests we have had done have helped tremendously to locate the specific area of nik's brain that is not functioning properly. They of course don't want to open him up and have to search around for the origin because that could take way to long and they may never find it. Sooo the first part of the surgery is putting electrodes directly on the part of the brain they think is the problem area. They will open him up put the electrodes on and then close him back up temporarily. He will have a few wires coming out of a tiny hole in his head that will be hooked up to a machine. Sounds graphic I know but it is reality. Hopefully he will be on pain meds so he won't know what is really going on. They will take him off of his epilepsy medication and then of course he will have seizures. Those seizures will show the doctors exactly where the seizures are starting. I believe this will be the hardest part of the surgery for Brent and I.......when I stayed with Niklas at Childrens Hospital in September for a two night stay they put 30 electrodes throughout his scalp and hooked him up to a machine to track seizure activity. They took him off of his meds during this time and the first night he had 20 seizures. It was awful to watch him go through this procedure. I felt as helpless as I have ever felt. I had to believe that we would get valuable information from this test and we did, thank god. If it is the only way to get the EXACT location of seizures then I am going to have to be at peace with the procedure. After they locate the area or areas they will then go back in and remove them the best they can. Our neurologists has told us that as young as he is the brain regenerates and other parts of the brain will help compensate for the areas that are gone. He definelty will need physical rehabilitation to strengthen his arms and legs. I am sure his coordination will also be off so we will work on that as well. We remain optimisstic that Niklas will benefit greatly from this surgery and the quality of his life will be dramatically BETTER.