Britton was born on May 2nd, 2019. I had joined several Facebook groups previously searching for help or any answers – and I remember one of those groups having a few people that said their baby never cried after being born and the brain damage was so extensive that their babies had more troubles than I’m able to list. When Britton was born, we heard the most beautiful sound in the world - crying. We were so happy to hear him vocalizing.

The next few days were a whirlwind. He had scans, MRI’s, EEG’s and any other test you can think of. 

Britton had a large cyst in his left hemisphere, high possibility for seizures, abnormalities on the brain such as PMG and would have routine appointments to keep track of his development. We were released to go home after about 6 days and a prescription for an anti-epileptic drug to hopefully keep seizures away. He hadn’t had any yet, but the doctors were worried that he would and wanted us to start them as a preventative measure. We did.

🧠June 2020: Nightmare #2🧠

June 11th – We were sitting at my sister’s new house and we were eating dinner, outside and that thing that we had been fearing for over a year, happened. A month after his birthday, he started doing something strange that he had never done before. He was having a seizure – it wasn’t a grand mal seizure that you hear about. He was still looking at us, interacting with us and trying to do things but something was DEFINITELY going on. He was weak, his head was leaning to the side, his breathing didnt seem normal, his arm was twitching and you could tell he was terrified and not feeling well. We took him to the emergency room. Soon, we were at Norton’s. This seizure was followed by another in October. Soon they increased in both severity and length. 

But they weren't regular seizures - his seizures are different. Britton has refractory epilepsy, which means they aren’t able to be controlled by medication. We witnessed our baby have a 2 hour long seizure, with no rescue medicine able to stop it. 

With a typical seizure, paramedics are to be called after about 5 minutes if the seizure does not stop. Our sweet baby has sat for 120 minutes in a seizure. Four different rescue medications were given in an attempt to get it to stop without success, on top of the four daily medications he was on at one point.  He has been in many ambulance rides & we’ve called 911 too many times. We have been in the hospital where Neurologists told us that a medically induced coma was the next step.

Refractory Epilepsy - a type of epilepsy that medicine could do nothing for. The type of seizures he has are called partial-complex focal seizures. Basically, his seizures were happening in one area of the brain and hadn't spread (yet). They were intense, but somehow he was able to partially talk and interact during them.

We found out soon after that this is a very promising thing.

Refractory epilepsy was robbing our baby and our family of a normal life. It made relaxing at home or simply watching a movie non-existent. We did not feel comfortable leaving Britton anywhere for any amount of time. I remember one time finally feeling brave enough to go exercise while Ashley went to the grocery store - 30 minutes later we would be sitting with EMS, deciding whether or not we should be going to the hospital again for this seizure.

Like any other parent, we were desperate to find a solution. Seizures of this lengh and magnitude meant that death from epilepsy was an actual possibility. We traveled all across the midwest to areas like Le Bonheur hospital in Memphis Tenessee, Cinicnatti Childrens Hospital, and Norton Childrens searching for answers.