Over the past several days I have been much more active. We are cautiously optimistic since many of my movements are spastic in nature. We did get a taper schedule on the medications that we feel are not working. I'm 3 weeks into my 6 week taper off of Phenabaratol and after that will start my 6 week taper off of Topamax. Dr. L doesn't want to take me off the Keppra even though we know it is not working, but if I know Mommy and Daddy they will get their way and get me off of it. So if I remain seizure free I should be off all my meds before Christmas. Mommy told me that would be a wonderful gift for her since she does all my meds at this point. So we will find out since I have a maintenance EEG in 4 weeks. Dr. K was kind enough to inform my parent that she treats another kiddo who was looking great and when they did her maintenance EEG she was in fact worse. We were not sure how to take that info at first but have decided that is not going to be the case with me.
We are so thankful for all the gifts, notes, and messages people have been sending. Aidan and I loved the care package sent by Don and Cindy (you can see Aidan working hard on coloring me a picture). Mommy's work was so wonderful to provided us with more meals which with Aidan in school and coming home earlier now it is so helpful. It gives Mommy and Daddy more time to spend with Aidan and I. Mommy reads me all the thoughtful emails and cards she has been receiving. They are a wonderful inspiration and only make me want to work harder to prove the doctors wrong. Thank you to everyone for being so supportive and thoughtful. Our family is truly blessed!!
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