Trip to Cincinnati Children's Hospital

Ever since we discovered Grant's epilepsy (that will be subject of another post), we have wanted the best possible care for him, as any parent would want for their child. The problem we had was this was uncharted territory for us. We had never seen a neurologist or dealt with epilepsy before. The closest we had come to it was anecdotal evidence of friends who had family members or others that had it. I honestly thought when someone had a seizure it was only the grand mal type of seizure. I did not realize that there are many types of seizures and what they involve.

After our initial visit with the pediatrician and neurologist in Atlanta, my wife and I started doing some research. She is from Cincinnati and we both knew that Cincinnati has an excellent children's hospital. What we discovered was Cincinnati Children's Hospital (CCH) is ranked 4th in the country for pediatric neurology, while Children's Healthcare of Atlanta (CHOA) is ranked 32nd. CHOA is a very good hospital and has an excellent network of doctors. But since we were in the dark and wanted the best care, we decided to take the trip to Cincinnati. Making this choice was a pretty easy one for us since my wife's family has numerous connections to medical community in Cincinnati. Another major contributing factor was that my wife used to nanny for a neurologist in Cincinnati who coincidently is the director of the Comprehensive Epilepsy Center at CCH. It seemed the stars had aligned for us and Grant.

We were able to get an appointment in mid-May, a week after our youngest, Emery was born. Grant and I made the drive to Cincinnati the day before Mother's Day. We stayed at my wife's parents’ house. Our appointment was on the following Tuesday. I had also lined up a couple job interviews in the Cincinnati area. Since I was unemployed, I figured if we needed to move to Cincinnati for the family's sake, why not see if I could get a job first.

My wife's stepmother went with us to the appointment. She is an RN and her medical knowledge and presence at the appointment brought me an extreme feeling of calm and comfort. Thank You Linda!! The Dr. we met with is the Co-Director of the Epilepsy Surgery Program. We met with him not because Grant needs surgery, but because the Director suggested, after talking with Rylea and I, that he would be best considering his type of seizures and other symptoms he was having. As soon as the Dr. came in he put me, my mother-in-law, and wife (who was on speaker phone) as ease. He answered every one of our questions, took the time to explain things to us that we did not understand, and showed us on Grant's MRI the cortical dysplasia lesion and its location. We met with him for nearly 3 hours. We left there with a printed plan of action for the next the three months, contact numbers, prescriptions for medication and therapy evaluations (speech, occupational and physical). Most importantly we left there with a sense of direction and a little bit of hope. 

Grant's next visit to CCH will be in August. During that visit he will have a 24 hour video EEG and a sleep study done. These will take place on two separate visits. We are still in a discovery phase and the ground hasn't really settled below our feet. But at least we have gone from being stuck in thick mud to trudging through a swamp. We will make it to dry land and the light ahead but it will take time.

Post from Facebook on 4/10/2013

What's on my mind Facebook asks. Well, about 1 month ago, my youngest son was diagnosed with epilepsy, just two short days after I was laid off from my job. I'm not too worried about finding a new job, what I am worried about is my son, Grant. To see someone so young, so vulnerable, so innocent go through something like this is truly heartbreaking, especially when this person is your own child. After multiple tests, an MRI, and an EEG, it was told to us that he has cortical dysplasia of the frontal lobe. Basically when the brain forms in utero, some cells don't migrate where they are supposed to go. This leaves too many brain cells (gray matter) where white matter should be. This extra matter is causing Grant to have multiple seizures a day. The type he is having is called atonic or "drop" seizures. His head drops forward, then he either stumbles or falls to the ground. He has stumbled into walls, posts, etc. Again to see someone so young and innocent go through this is absolutely heartbreaking. He is on medication, but the seizures have not stopped. The neurologist told us the type and location of seizures tend to be medicinally resistant. The seizures have also caused some developmental delays. He running about six months behind his age. The problem is we cannot move forward with any type of therapy to help him catch up until the seizures are under control. So, Rylea and I play a waiting game. A very painful, gut wrenching, horrible, very bad, no good waiting game.

The beginning

I have been told every journey, good or bad, begins with one step. Whether that step is misstep or not, it is still a step. You will not find out until later and look back. Then there are the steps that are taken for you. The ones that either other people take and they affect you or the ones a higher power takes for you. The reason I bring this up is because that is how Grant's journey began. When Grant was formed, more specifically his brain, some things did not go where they were supposed. I have learned that the brain forms in utero between 32 days and 36 days after conception. And it's a wonder the majority of people end up relatively normal considering the complexity of the brain.

This is Grant's journey. He has cortical dysplasia of the frontal lobe. Some brain cells did not migrate to where they should have. This gives him seizures.

This blog will be about his journey through this. I will write about his ups and downs where I feel it appropriate, but this will also be about the journey Rylea, Cole, Emery, and I take with Grant. This is because Grant is not alone in this journey. He has his mother, father, brothers, grandparents, aunts, uncles, cousins, and family friends with him. You will read about the ups and downs of us. Some of it may be hard for me to write, but for a good support system to be had, some information needs to shared.

So come along, join us. I will make you laugh with stories of Grant, but I will also make you cry. But throughout this whole journey, I will guarantee if you read this you will fall in love with our little Grant.