Yesturday Monday January 26th we meet with one of the doctors at children's hospital to discuss Niklas's surgery and what it involves. We came away from the meeting overwhelmed with so much information. Basically we are scheduled february 19th at UCSF for an MRI ( 3 TESLA) and then we meet with the head eptoligist at UCSF the following week. With all of the tests we have done over the past two years the doctors are still unable to totally locate the origin of his seizures. As the doctor said yesturday " his case is a complex case". Certainly not music to my ears......on the bright side they think they are pretty sure of where the seizures are starting ( they have to be certain with surgery) and if the MRI on the 19th doesn't reveal any new information or helpful information then we can decide to go ahead with the grid placement. Although invasive and quite a surgical process, the grid will provide much more information that is needed for the surgeons to properly remove the problem area. We also found out yesturday that the MRI will hopefully help to rule out an illness that doctors mentioned could be a possibility-Rasmussens Encephalitis. We have heard nothing until now of this illness but his case is complex and doctors are trying to rule out anything they can to make the diagnosis more accurate. The doctors did not say that they think he has this illness but they also didn't rule it out until they get the results back from the MRI. The way they would tell is if the right side of his brain was not growing the same as the left. They would compare this scan with one done 10 months ago. With this information yesturday I felt like somebody punched me in the stomach. If it is Rasmussens Encephalitis then surgery is not an option and medication is not effective. I guess they use auto-immune medications to contain the illness. I seriously can't focus on RE yet because we don't have enough information and we don't know if he even has it. We have chosen to focus on the MRI on the 19th and I am praying that RE is not detected. We have gotten through many obstacles in the past two years with Niklas, with numerous tests to rule out awful illnesses and diseases. One in particular we dodged was Tuberis Sclerosis which we had to wait two weeks for the results. Fortunately it was negative-thank god. So I guess patience is in order right now which is not my strength.......I have to believe a solution is waiting for us after the 19th. Our doctors want to be certain to rule out anything that may stand in our way. I commend them on being cautious and very thorough with our case. soo as of TODAY that is where we stand......

Where we stand right now is.......the doctors met last week at UCSF and all agreed on the area of the brain that is having seizures but want Niklas to have one test repeated because they do see some activity on the opposite side of the brain and they want to make sure that nothing is going on in that region.  They are pretty sure the activity starts on the right and then generalizes to the left.  So the right side would be operated on.   We are waiting to hear when his test is scheduled at UCSF. Hopefully very soon and we are meeting with one of the doctors next week to go over what to expect and the procedure itself with the first part of the surgery. We are just taking it one day at a time and we are all trying to stay in TODAY.  I picked up Nik's kindergarden packet yesturday to registar him for September and in the back of my head I question if he will be able and ready.  I realized this is out of my hands and I need to turn it over and not obsess about it.  The sooner we get going with the surgery the better in reference to our time table but I CLEARLY and QUICKLY realized that this is not on my time or Nik's time.  We have NO control over this situation.  

sooo we still haven't heard from our neurologist....we were suppose to hear from her yesturday so needless to say we are very frustrated and beginning to get angry. We did talk to one of the doctors that was present at the presentation/meeting Thursday and she said that he needs to have one more MRI to make certain of the area of the seizures. I so don't want to put him through yet another test but in the end we have come this far and if this is going to help facilitate a much better surgery than I guess we have to do it. We are now waiting to hear when the MRI is scheduled, hopefully ASAP. In the past we have had to wait weeks. Thank you to everyone for your kind words, love and support. Brent and I would not be this far in the process if it wasn't for family and friends. I will keep posting information as I get it.

Still waiting....haven't heard yet what the verdict is. Our neurologist said she would call us tonight or tomorrow by noon. We are trying to stay patient. I'm not sure when the doctors met today or how long the process took. As soon as we know anything I will post it. PLEASE SAY PRAYERS..........

Samantha and Niklas...best buddies.

Niklas wearing his monitor...such a good sport. He had to wear it for 24 hrs. The doctors wanted to track his heart throughout the day/night.

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.

La jolla visiting his cousins.....

September 2008 Children's Hospital Oakland

Always a good day at the beach......in Capitola.

This is exactly the smile we long for every day. This was a good day!

As many of you know Niklas has been struggling with epilepsy for the past 18 months. He has only responded a little to medication and to date we have tried 9 different kinds. His seizures are contained during the day but at night he is having seizures, every night. The seizures are disrupting his sleep, making him upset, and most of all scaring him to death. We have had so many tests over the past 18 months I can't even count on both hands, and we have come to a point that something drastic must happen to better the quality of his life. The entire process of finding the right anwser has taken a very long time and many different hospital visits ( Stanford, Children's Hospital of Oakland, and UCSF) BUT we think we have some sort of a solution. Niklas's case is being evaluated on January 15th at UCSF by a team of doctors who are going to determine the best coarse of action in treating Nik. Brent and I will have to then make a decision on the information we are given and weigh the pros/cons of the surgery. Please say a prayer for our family as we need all the help we can get. Thank you to all of the family and friends who have helped us through this very tough time.

January 2009

Happy New Year! And hopefully a happy one for our sweet Niklas.