We went and saw Lila's neurologist Dr. Filloux this week. We have been very blessed to have such a nice and accommodating doctor on our side. He has been so wonderful, we feel really lucky.
No new news from the researchers in the U.K about when they are going to publish. I want to email them but last time I got on their nerves they told me just to ask my questions to the doctors here. Its hard for me to learn patience.....
Lila has been doing motions like she is startled, and while at first I thought they were just moments of being scared they have started to turn into rhythmic and continuous motions. Dr. Filloux believes that these are seizures. So while I was thinking Lila only has seizures every couple weeks we now realize that she is having several clusters everyday. Obviously we are pretty sad by this new news, but we have started to take bad news in stride and just try and figure out what we can do to make Lila's life better. Lilas Doc gave us a prescription for some seizure meds. I haven't filled it yet. I am still on the fence of what I want to do. I hate giving her any more meds then necessary but I am also wondering if this may help her sleep and then she will be better alert during the day. I wish decisions about Lila were more Black and White but everything seems to be in this gray area.
Other than that we are thrilled to not be in the hospital yet (knock on wood!!!) Lila has been doing pretty well this winter season. Just a cold and a horrible spider bite! Poor thing. We know that there is a hyper little toddler in there just dying to get out. If you grab her legs and make her "run" she laughs and gets excited every time. She also loves to twirl and dance, especially with her daddy.