Tuesday, February 24, 2009
Outstanding..........
WOW what a day. Brent and I went to UCSF today to meet with our surgeon and our neurologist. Today was definetly a good day.....FIRST we ruled out Rasmussens Encephalitus!!!!!!! Seriously I felt like I could breathe again. Google it and you'll see why. Also the doctors detected a lesion ( an abnormal piece of brain matter) with our most recent MRI done on the 19th of February. This was outstanding news because until now the doctors had been speculating where the seizures were coming from. This finding gives the surgeon such a better and more accurate picture of what needs to be done during the operation. Since the onset of his seizures Niklas has had significant weakness in his left leg and his left arm and hand. The surgeon talked today about having to be very careful because the lesion is close to his motor area. If in fact the lesion is to close to the area they will have to get out what they can and leave what is to close to his motor otherwise Nik could suffer paralysis in his left arm and hand. We certainly are not out of the woods by any means but it was a huge win today with the news of the lesion on the MRI. He will be in the hospital for two weeks at UCSF. He will be admitted sometime at the end of March. As soon as I know the date I will post it. It will be a two part surgery. The first part is the grid placement. Then after 6 days they go back in and remove the abnormal matter. I really believe that he will have a better chance at a normal life and so does the doctor. He will have to be on medication after the surgery for awhile and may have to stay on it for some time but the goal of the doctors is to get him seizure free first and then hopefully at some point off of meds. We haven't gone two days without a seizure in two years. I feel like we have been reliving a nightmare over and over again the past two years...its time to move on and move forward. I hope that this surgery will give Niklas freedom to be a kid again.
Wednesday, February 18, 2009
Monday, February 9, 2009
Wating for the 19th of February
So we met with the surgeon a week ago Dr. Kurtis Aguste, and talked with him for an hour and a half about the surgery, what it entails, and what the outcome may be. I was really taken with the doctor in particular his bedside manner. Niklas seem to connect with him which was evident by his huge grin. The plan therefore is to wait until the 19th for our MRI at UCSF. The following Tuesday Feb. 24th we meet with the surgeon to discuss the results and hopefully rule out Rassmusens Encephalitus....If we are able to rule it out then we go ahead with surgery and pick a date. It all boils down to the surgeons availability and the operating room availability.
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