Nathan John

Nathan John was born August 19th, 2011.  He was healthy, happy and a growing little boy. During his first 16 months he reached each developmental milestone. He smiled and played like every little boy should.

In January of 2013 Mark and I went on our long distance trip away from Nathan. Grandpa and Grandma Lanz with Aunt A were going to watch him for us. We flew out early in the morning.  Mark and I booked a hotel on Marco Island in Florida, and where fortunate to be next to Wayne and Michelle's Virkler's timeshare.  We never could of known what a support they would become in the following days.

Nathan, January 2013 at CCMC

Sitting in Fort Myers church Sunday morning I saw someone get called out of church out of the corner of my eye. I did not look to see who it was, I was a visitor there and knew only a few familiar faces. The service concluded and we ate lunch like every Sunday. On the way home Mark got a call. He kind of quiet, and asked who it was. It was Barry. Nathan was taken by ambulance to Connecticut Children's for seizures-again. Mark had been the one called out of church because Nathan was in the ER of CCMC. The rest of the day is hazy for me. In the following hours there were more phone calls, and decisions about what to do. Nathan had another seizure and was taken by ambulance for a second time that day. On the way into the hospital he had his third seizure. The doctors tested him for the flu, which came back positive, and they felt like this was contributing to the seizure. We felt that we should fly home. After supper that night we started to look at flights. I decided to Skype with Audrey so I could see Nathan. That is when I saw his fourth seizure. I was talking to him and he got really wide eyed. My breath caught and I remember thinking, "This is not happening.  He cannot have a seizure over Skype with me. Please." The rest was a blur of doctor scrubs and nurses. He had his fourth seizure that night. Our minds were made up and we packed our things and headed to the airport that night even thought our flight was not until the morning. While we waited for the shuttle, I gave a verbal OK for the doctors to do a spinal tap on Nathan. At that point they were prepping him for a CT scan.

We arrived the next afternoon in Connecticut and went straight to CCMC. My mom had stayed the night with Nathan. I walked in his room and he looked so small and pale in his hospital gown. He was only 17 months old. Why? Why was my little boy so sick?  The doctors kept Nathan overnight again, and Mark and I stayed with him. It was a hard night- Nathan did not understand why Mommy could not crawl into bed with him, and why he could not go home. By the morning Nathan was doing better. Our pediatrician came and saw us at CCMC, and told us to schedule an appointment with him for a follow up. The neurologist felt he had the right medicine levels, so we where discharged.

Nathan, January 2013

Nathan has hard multiple EEG's done. Each one has com back normal.

Within the next seven to eight months Nathan had a total of around 14 seizures. They always came in clusters. They always happened when Nathan was put under extreme physical stress.  Really severe cold sores, 15 hours plus fasting for a MRI etc. With each cluster Nathan's medicine dose increased. With each increase Nathan's development decreased then regressed. Nathan had been learning how to walk when his seizures started. By the time October 2013 came he was screaming when I tried to put him down. He had been signing- now he was barely communicating outside of pointing and grunts. His PT and Speech therapist suggested we switch his medicine  which I agreed with. It took a little convincing of the doctor, but we finally got it and switched. Within in a month Nathan came out of the fog and started to talk. His walking, however, did not come back. A MRI reveled that his cerebellum was smaller then it should be.

At this time I made an appointment with Boston Children's and switched doctors at CCMC. Both of the new doctors listened to Nathan's story and agreed that the first medicine most likely played a role in his developmental regression. They diagnosed Nathan with hypoplasia ataxia.

Ataxia is a motor planning disorder. I have a very simple understanding of it. In my basic terms, Nathan has very poor balance due to his smaller cerebellum which is effecting his gross motor development. With proper interventions Nathan will continue to grow stronger with the hope of walking independently.

This is short version of Nathan's story. It was difficult for me to go back to January 2013 when this started. We have been seizure free for over a year, and I had distanced myself from that time. Nathan gets seizure medicine twice a day still- we are waiting a little longer before we talk about taking him off of the medicine.  Once I made the decision to start the blog, my mind has been spinning remembering everything. Maybe someday I will sit down and really chronicle 2013.  For now, we thank each and everyone for their prayers, love and support of Nathan. God knows best, and even though we do not understand why this was brought into our lives, we know that He loves us and has seen us through so much. I can truly see the hand of God every time Nathan talks, plays and walks with his walker.  I thank each one who has shown patience toward us through our adjustments and with Nathan. Having a child with special needs brings you to your knees in prayer more then some people will realize.