I think we have a plan.

As far as plans go, it’s not a great plan (a great plan being “magically stop my baby having seizures”) but it’s a plan and it will do while we wait for Evie’s metabolic tests to come back.

She started phenobarbital Tuesday morning and has been having regular doses of what I am terming “baby drugs” (different from “kiddy crack”, in that “kiddy crack” is actually chocolate milk) and so far, aside from a sedative effect, there hasn’t really been any impact on the episodes.

From here, we’re hoping to be discharged today, to continue giving her the phenobarb at home, while monitoring the seizure activity and following up in the clinic early next week.

Side note: I am all for gazing adoringly at my tiny baby, but do you know how exhausting it is to watch the baby constantly, to the exclusion of nearly everything else? Exhausting. It’s a good thing she’s so pretty.

If the phenobarb doesn’t work, we’ll try another medication. This we’ll continue doing either until something works, or she naturally grows out of the episodes, or the metabolic tests come back and tell us something.

The problem with Evie’s seizure episodes is that she’s not presenting like a newborn. Normal newborn seizures (usually benign, I should add) are different to Evie’s. Evie is presenting with seizure activity that is similar to something that shows up in 4-5 month olds.

She’s very advanced, obviously.

This is, of course , the reason we’ve done all of these tests, because she’s not presenting in a textbook fashion for the benign seizure disorders that show up in babies. Typical child.

Today when I see the doctors I will mention yet again the probability of Evie having Ehlers Danlos Syndrome (which, SURPRISE! can also be linked to a relatively rare metabolic condition] and see what they have to say.

But really, until tests come back, we can’t do anything except try and control the seizures.

(Or, seizure type episodes, as the doctors insist on mentioning, at which point I say that anything that alters my baby’s consciousness and causes her to have involuntary movements and limited to no responses during, is not normal, and I don’t care what we call them, can we just get on with fixing it? Also, EEG’s are great, but they’re not perfect and how do we KNOW that they’re not just originating from deeper in the brain? Where an EEG can’t pick up? I am probably too well researched for my own good here.)

So, that’s it Internet. An interim plan.

(Also, please let us get home today. This recliner is crap for sleeping.)

Update: HOME! We’re HOME.

That is all.