Dr. says forget the study. He wants me to put her back on Vigabitrin. I am not ready. We are stopping Keppra. I want to lower the dose on the study drug (he wants her to stay on it, just not be in the study, for her drops). Lily did her best off V and just on Topamax and the low dose (or placebo) study drug. I am going to try that first. She was so alert and active on such a low dose of meds, I really don't like the idea of starting back up high dose of V. Of course if she is still seizing all day I will put her back on, but if I can avoid it I will. I love how Lily was in the spring. We were really making some progress and now we are starting from scratch. Yes she had a lot of drops, but that recovery is a few seconds, these GM's are an hour or so.
Wish us luck or pray for us during this transition.
I am going to Vegas with my mom, sister, and aunt this weekend to see Bette Midler. I am so excited. Although it is a bad time to leave Lily, if I can't trust her with her dad, who can I trust.
I am pretty sure seeing Bette will completely take me out of my rut I have been in. It is so hard when you feel sick, feel exhausted and are constantly worried about your kiddos.
I think lying at the pool with a fruity drink (non-alcoholic, of course) and seeing Bette is exactly what I need right now.
Keep us in your thoughts and prayers please.
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