March Update More Surgeries: Since last surgery was completed on January 16th 2025, it takes 2 months for his brain to recover to his baseline levels. The team at Johns Hopkins have met and came up with the best plan for Jacob. Since the areas where Jacob's seizures are coming from are both inoperable, (in his language area) the next step possible is a 2 phase RNS Surgery. The first surgery and hospital stay they will implant a wire to the 2 areas in the left temporal lobe where the seizures are starting. After a night's stay we come back home. We go back a week later for phase 2 where they will open his skull as was done in 2018, make a pocket for the RNS Device, connect the 2 wires and close that back up. We will be there for 1 or 2 nights and return home. Jacob is at a higher risk of brain infection as this area was already opened. That chance on infection increases over the next 20-30 years. So we have to decide if we want to go through with this. Also, the chance of him responding to the device is a 50% chance, meaning it may not even help.

In the meantime, he had a CT Scan as they found a mass in his Parotid Salivary Gland that has to be surgically removed regardless of the biopsy results. So the Neurosurgen wants this mass biopsied and removed before anything else. We will go up for a biopsy, then outpatient surgery will be scheduled, we come where Jacob will have bag for the drainage. A few days later we will return to have that removed.

He is still having seizures which start with an Aura. (The aura is a seizure in and of itself. Jacob refers to it as "the bad feeling". It is then that if he can''t swipe his VNS, I do. Sometimes he can't talk when this begins, so I can tell by looking at him to get him in a safe place.

The co pays for past surgeries, (January 9th through January 17th of this year) monthly co-pays for his medications is overwhelming and it has been difficult. The last surgeries were over $150,000 and I do not have the estimate as yet for the upcoming surgery to biopsy and remove the mass. It has been very difficult but we are so grateful that we found the best Epilepsy Center. He is a true Epilepsy warrior. We are very humbly grateful for any help at all. Any donations will be used for these outstanding medical bills.

Jacob has been put on Medicaid over a year ago and the Medical bills are piling up. His Epilepsy is Intractable, meaning it is Drug Resistant, therefore he "breaks through" his medications and his seizures became much more frequent and and more severe. John's Hopkins was able to see him in September of 2024. He has undergone various testing and most recently a Brain Surgery requiring 14 Depth Electrodes in his left temporal lobe. The reason being, the team at John's Hopkins needed to pinpoint exactly where the seizures are starting. During his 9 day stay numerous seizures were recorded, language, comprehension and memory testing was done along with MRI, CT Scans as were necessary. The electrodes were removed 7 days after being implanted. We were released and he at home recovering. He is still having seizures some as expected due to being off of his Anti Seizure Medications for an extended period of time. It will take time for him to readjust to being back on the medications.

While he received an extremely high level of care during our stay in January of 2025 the estimate prior to admission was over $150,000.