about a day or two after our appt with neuro, we got a call to set up the ambulatory eeg, which is not a fun thing to go through... especially with a 1 year old, and probably the worst tech to ever work with children ever... ever. tomorrow will be one week since we went and he still has adhesive that is just refusing to come off and weird bruises were the tech drew on his head with what looked like an overhead projector pencil... dont act like you dont remember those...
anyway, she attached something like 25 wires to his head, these were connected to a little box and then she plopped that box on the top of his head and gauzed him up like a baby mummy. then there was a thick cord that came from that box to a bigger box that he had to wear in a backpack. and once we got home, we had an even bigger box, like a shoe box for boots but with like ten pair of boots somehow squeezed inside. the big box had to be plugged into the wall and connected to the medium sized backpack box, it also had a camera on top of it that i had to try to keep on the baby... super easy. blah. it was terrible, he kept pulling at his head, pulling at the cords, he hardly slept, and everything on the top of his head was on the side of his head when he got up the next morning.
heres a pic of my baby man with his gear on, and i even caught his little 'episode'
BUT. we got the results and its not seizures! yay! but that just means its some sort of other behavioral tic that needs to be addressed, im really hoping its just some weird thing that hes decided to do for no apparent reason and nothing neurological related to his microcephaly. we have an appt in march with a pediatric developmentalist so i guess we will see then. we're still waiting on the results from the bloodwork ordered by the geneticist... theres a lot of waiting.
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