I was able to stay with Jaylie last night. From about 12am until 4:30am Jaylie slept soundly. At about 4:30am Jaylie woke up with a grunt which is usually a sign of an event. I sleep right next to the bed Jaylie is sleeping in. By the time I got up and over to Jaylie she was fine, wide awake, smiling and playing. The nurse came in and I advised the nurse I think Jaylie just had an event but was not sure. The nurse advised if an event were to happen again to push the nurse call button right away and advise them of what is going on. The nurse did some routine stuff with Jaylie and then Jaylie and I laid back down to try and get some sleep. At about 5:30AM Jaylie had another event, this one was pronounced and was continued by a couple other events. I pushed the nurse call button and called the nurse in. Jaylie then did one last event the nurse was able to witness. The nurse then called the Dr in to take a quick look at Jaylie. The Dr asked the nurse and I what happened exactly and both the nurse and I were able to describe the event to the Dr. The Dr advised Jaylie looked fine at the moment and that the EEG scheduled later on in the day would hopefully give us more information.
So at about 10am this morning, the EEG guy came in and performed a 1 1/2 hr EEG during which he watched and recorded Jaylie’s brain activity. Jaylie pretty much slept through the EEG because the whole ordeal of putting the like MILLION little connectors on Jaylie’s head was a seriously traumatic event for Jaylie. Jaylie was wiped out by the time the EEG guy was done attaching all the wires. Due to Jaylie being wipeout during the EEG test, they did not catch Jaylie during an event but were able to gather enough data for the neurologist to order a second 24 hr EEG. After the EEG was complete, the results were sent off to the neurologist. The neurologist advised after looking at Jaylie's EEG results, she believed Jaylie is suffering from Infantile Spasms ( a form of seizure ). The neurologist ordered a second 24 hr EEG of which we are currently participating in. The neurologist hopes to catch an event which monitoring Jaylie during the 24 hour EEG.
The neurologist advised if it is infantile spasms we would need to start medication right away. This medication should stop the spasms (aka seizures) completely for a period of time but based upon Jaylie's medical history the neurologist advised Jaylie may have to deal with seizures later on in life.
Right now we are handing out up at Swedish doing a 24hr EEG.
The research out on Infantile Spasms syndrome is very disheartening. You can read about it here: Infantile Spasms
Thank you for all you're prayer and support, we really appreciate it!
Nathan, Kristina and Jaylie!
Here are some pictures from today: September Pictures