Since seeing the Neurologist on November 21st, we've been keeping a seizure log more specific to what the information that the doctor needs. Basically just a count of the two types of seizures she's been having per day along with the medication amounts and times. I've been keeping little notes in the event of something unusual happening. A series of dates, hash marks, numbers and times. I kept telling myself that she was getting better. I'd said a couple times that she was having around 10 a day. I think in all honesty, that I had just adjusted to the new life with Josie. I saw one, I marked it down. We keep her in safe areas so the drops don't cause her physical damage, she holds our hands, burns energy off on the trampoline.
But tonight when I sat down to write this, I decided to see over the past 20 days how many she'd been having per day. Ugh. The lowest has been 4 which is great news. The highest was 53. That number came on the day that we reduced her first medication and I am guessing, that she was starting withdrawal. The average number per day is right around 18 which is an improvement from 20-30. However, our doctors are trying to get her seizure freedom, so we are a ways from our goal.
Anyhow, what I really wanted to say is we've got a plan. We'll be increasing her meds at the end of this week, seeing the pediatrician on the 23rd and then back to the Neurologist at the end of January. She's happy, we've adjusted/are adjusting and thank you all for your thoughts.
Thanks for the update. I wish there was more we could do out here to be helpful.
There getting so big =) I miss you guys. I hope all is well Keep in touch.