The Seizure Curse

I was really hoping we would escape the seizure curse of the encephalocele, alas...here we are. I finally have a moment to sit down and write. Yesterday morning around 08:30 I noticed Naysa doing strange repetitive, what looked like infantile spasms. I of course consulted my amazing circle of cele moms on facebook with a video I recorded when she did them again at noon then headed off to the ER. They got us in right away and the doctor and nurses watched the video and ordered a shunt series (x-ray of her shunt to make sure it's working correctly) and a CT. Both came back fine, they even said her CT looked better than it did the last time! Since she doesn't have a neurologist at Rady's, Tricare wanted us transferred to Balboa Naval Medical. Around 6pm Naysa was transported by ambulance with Ben and Mcgee (Ben's best friend) riding along with her while Amanda (McGee's wife) and I went to the house to grab a few things and let the dogs out before heading to the hospital. Shortly after we arrived Naysa had an episode that the nurses and a doctor were able to see. It lasted about a minute and a half and was every 7 seconds. They started her on a seizure med called Keppra and a sedated EEG was ordered for the following morning. We left the hospital around 9pm and I woke up at 05:00 to head back up there since she wakes up at 06:00. At 08:00 or so the doctor came in to tell me they were going to get her ready for the EEG so we went down two floors to the PICU and they got the machines and other equipment ready. She was already sleeping so I asked them to do it without sedation, luckily she stayed asleep the whole 30 mins which meant no sedation, yay! While she was being tested I went home to pick up Ben and we got back to a happy smiley bug :) I was really surprised how good she was being considering she was NPO (nothing by mouth) and hadn't eaten since about 11:30 the night before. I fed her as soon as we got there and halfway through she had another episode. Ben went to grab the nurses and they observed and checked her stats through out. Her heart rate didn't drop, breathing was fine..stats were good! The neurologist finally came in, took a detailed history and told us she was having infantile spasms (called it!) The EEG did show abnormal activity but not as strong as infantile spasms, likely because we caught them so early. She was impressed I had a video and asked permission to use it to show residents which I gave and hopefully it will help to identify them in another child. She took her off Keppra and put her on Zonegran. We have a follow up November 8th so it looks like our road trip is a no go. I am definitely taking this as a sign that we just shouldn't road trip to GA. This is now the second time Naysa was admitted mere days before the trip, she is obviously trying to tell us something! 28 hours later, we are finally back home and keeping a watchful eye on the bug. She is her happy normal self aside from the spasms for which I am thankful. It's one thing to see her go through yet another trial but it would be entirely different if she was miserable along with it! Thank you SO much to all of you for the constant love, prayers and encouraging words. Especially to Amanda and McGee for being at our sides the entire time. We love you all