Its hard to believe that in a week we will be meeting with a large team of doctors. We already heard from the Barrows Institute. (Dr. Spetzlers Team) Dr. Spetzler feels that Alexis is fine with where we are currently for treatment/care. But if she were to start having severe problems like (stroke, bleeding in the brain, AVM related severe things) then he wants her out to see him right away.
When ever Alexis has an upcoming appointment I get very anxious, sad, frustrated and really just very emotional. I am afraid of what they will say. I get nervous that I am going to have to fight for her needs and I just plain old worry. I worry about the good and the bad. Its so hard unless you have gone down the AVM journey to think that I need to just relax and try not to worry and stay positive. I do for the most part but I also know too much of the reality and what could potentially happen. If I didn't I would be educated enough to care and not prepared or know what to look for.
Sometimes I feel like I mourn that idea that Alexis is healthy, perfect and has a bright future. I believe she will have a bright future and is relatively healthy minus her AVM issue. But there is this sense that there is something wrong and therefor not. We are so thankful that Alexis's really only symptoms are her seizures. She just recently had a dose increase and her last seizure was last month. She has had three full body movement ones and a handful of staring ones since the grand mal that brought us to her discover of her AVM.
When ever Alexis has an upcoming appointment I get very anxious, sad, frustrated and really just very emotional. I am afraid of what they will say. I get nervous that I am going to have to fight for her needs and I just plain old worry. I worry about the good and the bad. Its so hard unless you have gone down the AVM journey to think that I need to just relax and try not to worry and stay positive. I do for the most part but I also know too much of the reality and what could potentially happen. If I didn't I would be educated enough to care and not prepared or know what to look for.
Sometimes I feel like I mourn that idea that Alexis is healthy, perfect and has a bright future. I believe she will have a bright future and is relatively healthy minus her AVM issue. But there is this sense that there is something wrong and therefor not. We are so thankful that Alexis's really only symptoms are her seizures. She just recently had a dose increase and her last seizure was last month. She has had three full body movement ones and a handful of staring ones since the grand mal that brought us to her discover of her AVM.