Wednesday, July 9, 2008

Small Update

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.

1 comment:

Kelly said...

Keeping you in our thoughts and prayers! If she was at her best in Spring, then go back to that RX routine! No one realizes we get our own pharmacology degree when dealing with nasty seizures! Good luck!

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