The brain is a super cool organ, people. Like, really cool. When you take the time to think about what the brain does, controls and manages… it’s MIND blowing. (ha! get it…) It’s such an amazingly complex organ that can do extraordinary things. Our journey with neurology at Nationwide Children’s began when Kai was in the NICU, not to be confused with nuero-surgery. I’ll get into that later.
* Side Note: Can I just say that I’ve never had any interest in the medical field. I never wanted to be a nurse, doctor, physicians assistant, therapist. etc. Honestly, I never even thought I was capable of working in the medical field and hospitals always made me feel uncomfortable. But after all of this, I feel like I might as well have a nursing degree. *
When we were cleared with neurology in the NICU, they recommended we follow up a couple of months after Kai’s birth to see how he was developing. When Kai was around 3 months old, we were referred to Dr. Kathryn McGinty-Kolbe, a nurse practitioner seeing neurology patients. She helped connect us to the appropriate specialists we needed to see and got us involved with the Help Me Grow program. This is a service provided to families of children with special needs through the county. By this time, Kai had already had 2 limited MRI’s but not a full MRI. This limited imaging showed us that Kai had some brain anomalies. So, what does that mean? Remember when I said the brain is an extremely complex organ? This pretty much just means Kai’s brain is different than a “normal brain” but there isn’t any specific diagnosis for it. So, what does that mean for his future? Who knows. At least that’s what I’ve gotten out of it. Towards the end of March, Dr. McGinty ordered a baseline EEG for Kai. It’s very common for people with brain anomalies to have seizure activity and be diagnosed epileptic. And since no one really knows what will happen with Kai, the name of the game has become check all of the boxes to rule things out. His baseline EEG went well and showed no signs of seizure activity.
If there is one thing Danny and I have had to learn to cope with throughout this entire process is not ever getting any answers. Because there really aren’t any. This will be a life-long waiting game to see how Kai’s brain anomalies will affect him. We continued to see Dr. McGinty, because it takes a million years to get into any specialist as a new patient I’ve learned, until we FINALLY got and appointment with his developmental neurologist. Let me tell you, she was well worth the wait. Kai’s developmental neurologist is Dr. Emily de los Reyes. Guys, this woman is amazing. Now, I’m not trying to dis any doctors. We are VERY grateful to all of the medical personnel who have gotten us to where we are today and cared for Kai. But let me be real, a lot of doctors we’ve experienced are not the best at communication nor are they the most friendly, personable people.
* Side Note: I worked for a urologist practice for two years, I felt the same about majority of the docs in that practice too. *
But Dr. Emily is NOT one of those doctors. Her “resume” states she is an attending pediatric neurologist and Professor of Clinical Pediatrics and Neurology at The Ohio State University College of Medicine. She also serves as the director of the Nationwide Children’s Batten Disease Center of Excellence AND is the lead specialist of the Pediatric Neurology Neurodevelopmental Clinic. And if that wasn’t enough, she is also the lead autism specialist and the Neurology subspecialty chair of the Autism Treatment Network at Nationwide Children’s. AND IF THAT WASN’T ENOUGH, she’s sooooo easy to talk to and one of the friendliest people we’ve met on this journey. No wonder it took 7 months for us to get an appointment with her.
In mid-July, we took Kai to his 3 hour long neurology appointment with Dr. Emily and her team. This consisted of a long questionnaire for me to fill out along with mini “tests” given to him by a pediatric psychologist, physical therapist, occupational therapist, speech therapist and of course, Dr. Emily the neurologist. What they determined was that Kai was a couple of months behind the “typical functioning” infant at 7 months old. Physically, he was only functioning around a typical 3 month old but social/emotionally about a 5-6 month old. At this point, we were just glad that he seemed to respond to us when we spoke to him, held him, etc. From the beginning, we were warned that he may never be able to eat on his own, talk, crawl or walk. We were told the worst. So, even if he was falling behind physically, we felt optimistic that he would succeed in other aspects, overcoming those brain anomalies.
We’ve been told time and time again, the brain can actually re-wire itself and “re-teach” itself how to function in different ways, overcompensating for other parts that might be lacking or missing. He was recommended for weekly physical and occupational therapy, in hopes that these services would help his brain grow and learn, despite it’s current state. At the end of August, Kai was sedated for a full MRI. Doctors wanted the details this imaging provides to have a better idea of what had been going on in there these past 8 months. Would it give us answers? Maybe some. But not all of them that we wanted, of course. Through this test, we learned that Kai most likely had something called cranial synestosis. I’ll get into that more when I talk about neuro-surgery. That and details of his shunt. What we also learned was that his right side brain is what suffered majority of the malformation and was significantly smaller than it was supposed to be. This made sense, since that was where all of the fluid was when he was born. He was also missing part of his corpus callosum, called dysgensis of the corpus callosum. This is the small connective tissue or nerves between the right and left side brain, passing information between the halves. So, we knew all of these things but still didn’t really know what that meant for his development and future.
I feel like we’ve come to a good place of acceptance with the fact that we will have to continue living life with a lot of unknowns. Talk about learning to live in the moment. For awhile, we were set in a rhythm of therapies and the waiting game of what the future would bring. Then came the seizures. Now, this was NOT confirmed by doctors but my mommy radar tells me these began when we were in Cincinnati visiting friends. On labor day weekend, we went down to Cincinnati and stayed with our good friends Eric and Ray. Over that weekend, we experienced a terrifying moment when Kai became violently sick, throwing up EVERYWHERE. (Thank god for Eric & Ray who jumped into action when I went into panic mode, poor Danny wasn’t there – or lucky Danny depending on how you look at it) We quickly took him to Cincinnati Children’s where he was taken into triage and sent to the ER for a shunt series. This is a series of imaging to make sure his shunt was still working properly. One of the signs of a shunt malfunction is vomiting. All imaging came back okay besides a little “over-shunting”, which I’ll get into later as well. They figured it was an intense, short virus and sent us home on some anti-nausea meds. Let me tell you, that wasn’t just a virus. I just know it wasn’t.
Two weeks later, Kai started having these “episodes”. For lack of better terms. It was exactly how he looked before he got sick in Cincinnati but this time, he wasn’t throwing up. He would start to zone out for about 30 seconds – 1 minute, kind of closing his eyes and becoming very lethargic. I decided to take a video of one of the episodes and showed his pediatrician at his 9 month check up. Immediately, his mind went to seizure activity and told me if they increased in time or length, to take him to Children’s. That was on a Friday. By Saturday morning, he had 3 more episodes. So, at noon Saturday, September 15, 2018 (my sisters 19th birthday!), my mom and I took Kai to Nationwide Children’s ER. Of course Danny was out of town, in Texas, for the Ohio State game with my dad and brothers! I know he felt awful. To spare you from the long drawn out details, we went from the ER, to being admitted, to 72 hours EEG monitoring confirming he WAS having seizures and placed on keppra medication to regulate them. We were there for 4 days and Danny made it home to be there for part of it. None of it was emergent and we were glad to know he was having them so that we could get him on meds to control them. But you know… it’s just disheartening. One more thing to worry about, one more diagnosis. Epileptic. But we knew this was a possibility since we were told seizures were common in people with such significant brain anomalies. So, one more hurdle. But Kai is a fighter and we…well we are learning to be too.
So, for now. Kai is a child diagnosed with hydrocephalus. Suffering from mid-line brain deformations resulting in several brain anomalies and dysgenesis of the corpus callosum. Also suffering from “Dandy- Walker syndrome”, aka developmental delays caused by brain deformations and epileptic. And he’s ours. And he’s perfect. And it’s OKAY to be UNFINE.