The CFM setup on Rowan’s head hasn’t really seemed to be helpful the last couple of days, as the sensors have a habit of loosening and falling off during feeds and handlings. I’ve dubbed it “Clearly Functionally Moot”*. His team replaced it with the EEG again for a half hour this afternoon just to make sure things still seemed fine, and then took that away as well. His head is now free of wiring. He had some more bloodwork done today for more genetic testing, which could take a couple of months to come back. An ophthalmologist is coming in at some point today or tomorrow to check out his eyes. It seems like they’re trying to think as far outside the box and get as many tests in while he’s still in hospital, even though they view a lot of them as unlikely to provide an answer to the seizure question.
Rowan’s getting one anti-seizure medication and two prescription vitamins a day, mixed in with some milk. Once some of the genetic testing results come back, and depending on the result, he’ll no longer need to take the vitamins. Since he seems to be feeding well, the seizures seem under control with medication, and most of the testing they can think of has been done, the medical team seems fairly close to releasing Rowan and having us head home and await results there. Still no specific date yet, but we’re crossing our fingers and hoping it’s sooner rather than later.
* [Ralphie from A Christmas Story voice]: “Only I didn’t say ‘functionally'”