My Head is Spinning

My sweet Rayleigh is not doing very well as of late. She has started having tonic clonic seizures. These seizures are also known as grand mal seizures. They affect the entire brain. She starts by slowing tensing her entire body and curling into a very tight ball - which makes it more difficult for me to get the VNS magnet on her battery. Then after 10 seconds or so of tensing she finally relaxes, BREATHES, and then goes into the clonic phase of the seizure. For Bug, right now that means rapid eye blinking, chewing motion with mouth, sometimes clenching her teeth and sometimes twitching her hands. It is a very dangerous seizure that lasts a couple of minutes on average for Bug. These minutes are terrifying and every move I make is calculated: using the magnet, getting rescue meds close and ready, making sure she doesn't hold her breath too long, consoling her. These seizures have already taken away her ability to hold her sippy cup all by herself. She also went through a loss of appetite recently and her sleep pattern has been off for some time (though we're not sure yet if those are related). 

Please send prayers that we are able to get these under control for her soon so they don't do too much more damage or get worse! Thank you!!

On a happier note, Rayleigh Bug seems happier through the day! Although she is going through a phase where she won't/can't smile as easy, I can tell what she likes and know when she's happy. She is really soaking up snuggles right now which I can't complain about!

I don't really know what else to say at this point. There is a lot happening in our world and I will share about that soon. I suppose now, while Rayleigh is asleep, I should get some shut eye because I'm sure she'll be awake around 4am again tonight - at least it's a happy-awake and not uncomfortable baby!