A long story short, there's more hospital stays in the future to hopefully get more answers. Below is a bit of what has happened in a week.

His EEG last year showed spikes only in the back of his brain, but still highly likely for a seizure. His EEG this year has gotten drastically worse. The spikes are higher and all over his brain which means he could go into a seizure at any time. They said there was so much going on in his brain they were surprised if he could learn anything. We will start a new seizure medicine in the morning in addition to the seizure medicine he is currently taking. They will watch his EEG for a few hours and if the spikes get better, we will be released as long as he can walk. he woke up this morning and was unable to walk. He still cannot fully walk and has been getting sick throughout the day.

We are still going to have to come back in July for another stay in the epilepsy monitoring unit. They want to make sure he does not have epileptic encephalopathy. If the EEG was even worse in July, we would start looking at steroids that could have some pretty big side effects and long-term effects down the road but that would treat the encephalopathy.

The genetic testing we got done in May was to rule out Haw River. Haw River is a fatal genetic disease that we believe runs in James family. The genetic testing came back inconclusive so we will have to repeat the test. The doctor did give us hope that since the MRI was clear last year he said it should be peace of mind because Haw River should have shown brain damage in the MRI if he had it. It still can’t be fully ruled out without the genetic testing.

We will also have to come back for a one night sleep study at some point for Sleep apnea to see if that could be a trigger.

We have lots of answers but more hospital stays in our future as we continue to get answers for Jason. He has been braver and stronger than James and I both. He has not cried a single time they have drawn blood and had been so sweet to his doctors.

Also please pray for me because I know God has his arms wrapped around Jason through all of this, but it’s hard not to question and get angry when watching your child in so much pain.

Please donate if you feel inclined to help with expenses. There's gas going back and forth, food during hospital stay, and James missing work.