As a new year begins, I have been reflecting on the past year. 2014 was definitely a doozy, and by far one of the hardest of my life. We started out the year with Eli having up to a 100 seizures a day. We could see his development slowing down, and we were scared. None of the medications were slowing down his seizures. At that point we still thought he had Doose Syndrome, as we had not yet had an MRI. Our next move was the ketogenic diet as that is suppose to be one of the best treatments for Doose Syndrome. We were hospitalized at the end of January to start the diet and that is when the MRI was done. I will never forget coming back from the MRI and the neurology team was waiting outside our hospital room for us. I knew something was wrong. There was something on his MRI. I remember asking if it was a tumor and was told “kind of”. Turns out that he had an abnormal area of white matter in his left prefrontal cortex. They didn’t know what it was at the time…cortical dysplasia, cortical tuber or low grade malignancy. The neurologist told us that this was good news, it meant that he was a surgical candidate. I thought he was crazy, how could my son needing brain surgery be a good thing. The neurosurgeon came to see us, and he was talking like surgery was inevitable. I couldn’t believe it. We decided to go ahead with the ketogenic diet at that time and see how he did. The plan was to give it a month and then reassess. The diet was pure hell. Eli ate everything, but he was always hungry. He would stand at his highchair crying for more food. Plus, despite being very meticulous with the diet, he never seemed to reach a high level of ketones, and it didn’t work. So in early March, we were admitted again for another EEG. This is when we met Dr. Goyal, a pediatric epileptologist, and began talks in earnest about doing surgery. The weeks leading up to his surgery were unbelievably difficult. I remember asking my mom…”How am I suppose to let someone cut open my baby’s head and take out part of his brain?” She said that we would do it because we love him and because we can’t let him continue to suffer the way he had for months.
Well, we did do it. We trusted neurosurgeons with our son and let them resect part of his left frontal lobe. And now I know how truly blessed we are. Eli has been seizure free for 8.5 months. When I look at where we started to where we are now, I know we are extremely lucky. Doose syndrome would have been a much tougher road. Those parents would die for a chance to have surgery to fix their kids epilepsy. I think and pray for those parents and kids all the time. We are not out of the woods, but to have 8.5 months of seizure freedom is amazing, and there is a good reason to hope that Eli will never have another seizure in his life.
When we were contemplating surgery, the goal was just to get through surgery. There was hope that it would stop his seizures. That was the focus. I just assumed that if we stopped the seizures that he would be fine. His development would just pick back up and we would have a “normal” son with no more worries. What I didn’t realize was that seizure freedom was really just the beginning of our journey. It turns out that months of constant firestorm in your brain have long lasting effects. Eli still isn’t talking. A few weeks after surgery, Eli really withdrew. He stopped responding to his name, he stopped making eye contact and just kind of went into his own little world. I became really worried that he had autism. I think his brain was just in shock going from constant seizure activity to none. Some people call this “forced normalization”, and it has its own consequences. And even now that his interactions with us, eye contact and interaction with the world is much better, I still believe that Eli fits a lot of the criteria for an autism spectrum diagnosis. What I have come to realize is that he lost all the foundations for language and communication, and now he is trying to build those back in a brain that is damaged. I am now learning the mysterious world of special education. But, I am starting to realize what he needs, and I think his therapists are too. We will be starting ABA therapy and more specifically verbal behavioral therapy this month. He also goes to an early intervention school 4 days a week, and they are trying to find space for him in a different program that will focus on social and communication skills.
Despite all this, he is such an amazing little boy. He learns and does new things everyday. He loves bubble guppies and even tries to say bubble guppy. His play with toys has gotten so much better. He loves to play games on our phones and the kindle. It is so neat to watch him navigate our phones and the kindle to get what he wants. He is saying a lot of new words, just nothing super consistent. Despite everything, he is really such a good kid. He minds well and hardly ever tantrums. He loves to snuggle, hug and give kisses. His personality is really starting to emerge, and his laugh is amazing. He really is a happy kid which is what matters most.
We are happy to be putting 2014 in the rearview mirror. We have so much to be grateful for and hopeful for in 2015. We hope that Eli will remain seizure free. We hope that his development continues to progress. We don’t know what his future will be, but we have more hope than ever that he can catch up and have a wonderful life!
Eli at his 2nd Birthday Party
Lovin’ on Mommy
Lovin’ on Daddy
Riding the Ferris Wheel with Daddy
My Superhero on Halloween
My handsome little man
Eli throwing balls to bubble puppy on the kindle
Eli saying “bubble guppy” while watching Bubble Guppies