No good news lately

We haven't had a lot of good news with Cailyn's medical diagnosis lately.

She went Friday for an EEG, tracking of brain waves and seizure activity, and some bloodwork for more genetics tests. The blood work will take 4-6 weeks to come back. But I talked to the Neurologist this morning and it was not good news. Cailyn's EEG was a little worse than the one last year. He said there were a lot of little electrical episodes called subclinical seizures. Even though we don't see her having seizures, she is, approximately every 10-20 seconds, and the startles all do count as seizures. I asked if this is why she has not attention span and can't really focus on anything and he said it's like static always running in the background. He upped one of her meds he wants to try to cut the static but not drug her out. I asked if it's looking more like surgery at some point and he said she won't see enough of a benefit and she'd still have seizures. There is not one place where her seizures start from so there is not one place to pinpoint for surgery. He said she probably won't fully respond to meds either but he'd like to do better. So no answers or solutions.

The other thing we learned a month or two ago is that Cailyn is now considered to have cerebral palsy. The doctor told us the diagnosis won't change anything, it just might help get services when she starts school or with the insurance because it's a recognizable term. He said it is a catchall diagnosis and used the most basic definition of brain damage before the age of 1 that permanently affects mobility. Basically too many seizures have damaged her brain.

So pretty shitty news overall. We try to stay positive, knowing she's happy and healthy, but some days it's really hard.