Why I don't tell Facebook.

1. Nobody at work knows about this blog yet.
2. My cousin the germophobe who stays home with her baby also doesn't know about this blog yet.
3. My mom's best friend is my facebook friend.

So let's go one at a time here:

1. Nobody at work knows about this blog. Let's take a purely practical stance here. I live 45 minutes from the shitty hospital with a PICU and 90 minutes from the good hospital where our neurologist is based with a PICU. Every single time Lucy goes into status, we get airlifted to one of these hospitals. It costs us approximately one year's salary for each flight. Our insurance has been awesome about covering this, but there's a couple of things we worry about: (1) we have a $2 million/year cap which at some point we might actually meet because of this; and 2. remember I said the closest hospital is shitty? We have to try to convince the local ER doctor to send us farther away to the good hospital, and I'm not always successful. The last time we were there, the doctors not only tried to kill Lucy themselves, but then they tried to instruct us to kill her. So we might need to move to put us closer to the better hospital, which will mean that I might need to not go back to work. Please don't tell my boss.

2. My cousin is a germophobe who stays home with her kid. Her kid who is the EXACT same age as Lucy. Hold onto that thought for a moment, and consider this one: DSDs are genetic disorders. Sometimes they are de novo (which means that Lucy's genes broke themselves) or sometimes they are inherited. So we are going back for some parental cheek-swabbing in a few weeks. Our google-researching tells us that if it's inherited it's better for Lucy. However, I've been told that my cousin's kid has never had a fever. Since Davet's frequently presents as febrile seizures, I'm a little freaked out by this. So I can't say "Dravet" on facebook, because I don't need her googling yet.

3. My mom's best friend is my facebook friend. And my mom thinks she's a doctor who can solve this by rereading medical textbooks from 1964. I'm not ready to say "Dravet" to mom yet, because I'm not ready to tell her what it means yet. But I suspect it's coming, because I'm getting tired of telling people that Lucy's last seizure is not her last seizure, if you get my drift. And the final reason, ultimately: our neurologist, who really is awesome, isn't nailing down a diagnosis yet. Lucy has an SCN1A mutation. We know that. I've had a professional come to the house and look at her, and I know that Lucy has some significant gross and fine motor delays. I also know that intellectually and verbally, she's doing fine. She has a huge vocabulary (between 75-150 words) uses simple sentences, follows some 2- and 3-step commands, and is even starting to use pronouns.

Dravet is a scary thing to say. Any of the diagnoses are scary. When they first told us she had a seizure disorder, that is all I would say. I couldn't bring myself to say epilepsy, because that sounded worse. It also made it true. I don't know if I'm ready for this to be true. This is a link to a video about a girl with Dravet's called Ciara's Light. Some seizures are shown, so it can be pretty upsetting. Also, the mother discusses the possibility of SUDEP, which every episode of status seems to make more possible, along with the terrible possibility of death during a seizure.