Paxton was born a normal healthy baby, we had a rough patch of jaundice and reflux but those are pretty common. When he was about two months old I noticed this odd jerking motion he made with his leg. I asked around and I talked to his doctor, we were told it was a normal reflex. I still didn’t like it so I kept watching and soon his arms were jerking too, and then his whole body. I googled it, it was devastating but I knew I needed to get some answers. We decided to see a new pediatrician and on February 21 we went to Dr. Ron Smith for Paxton’s four month well checkup. During the visit, Paxton had two cluster seizures and Dr. Ron knew there was a problem. He wanted us to see a neurologist but it would take several weeks. The next day was our last day to spend as a family because I was going back to work the following Monday. We had lunch with Paxton’s Godmother, went to a museum, and had dinner. Cliff and I were upset the whole day and with every seizure cluster, which was every hour lasting 10 minutes each, we became more and more panicked. That night we took him to Children’s Healthcare of Atlanta at Scottish Rite.
We were at SR for three weeks. He had a series of test including an MRI and a few EEGs. They tried several different medications but couldn’t slow the seizures down. At some point they had to completely sedate him and put him on a ventilator for 6 days. We quickly learned that Paxton was born with a brain defect and that not all of the cells were in the right place. It is called gray matter heterotopia. This type of brain defect is very resistant to medication and we were told the likely result would be brain surgery. We were devastated. I cried every day, all day. I grieved. I was scared and confused and didn’t know how to get through this. I quit my job because I knew I needed to be with Paxton. We took a baby that was developmentally on track into the hospital but that is not what we brought home.
From March until July we spent every day trying to find our boy within the shell that was Paxton. We were doing Physical Therapy and Occupationally Therapy once a week and then I worked with him at home. Paxton could not track with his eyes, he only looked left. He could not lift his arms or legs, hold up his head, babble, play with toys, or smile. He could only lay there and stare off in space. It was heartbreaking to everyone!
There was also this persistent stuffy nose. We didn’t know why it wouldn’t go away until one day I looked in his nose and I could see a mass in there. I started hounding every doctor that would listen and finally when we were at CHOA – Egleston for some testing they listened when Paxton started desatting at night. It was a meningocele. It is another rare brain defect where the lining of his brain grew into the nasal cavity and it was filled with spinal fluid. To remove it they had to do brain surgery. He had a craniotomy at the end of July. I am stunned we (Cliff and I) made it through it, my heart felt like it was in a vice grip but I knew this was what was best for him.
After the craniotomy it was discovered that Paxton had a problem swallowing his milk and food. Instead of the fluid going to his stomach it would go to his lungs. This can cause infection and phenomena. In September he had a feeding tube in his stomach.
Since his brain surgery everyday Paxton surprises us with something new! He is smiling again, kicking his legs, waving his arms, squealing and blowing raspberries. He is currently at a 3-4 month developmental age. He is coming back to us and the beauty of it overwhelming!
Now we are preparing for his next surgery. We will be travelingon March 16th to Cincinnati for this surgery on March 18thand could be there for 3 weeks. This is the 3rd best hospital in the nation and we have every confidence in them. It is a left functional hemispherectomy. They will remove the left side of his brain from the right. The left side is where his seizures are coming from. This will cause some loss of motor function on the right side and will impair his vision and speech. With therapy his can learn to overcome these new challenges. This surgery gives Paxton an 80% chance that he will be seizure free and can start progressing so that he can have a chance to have a real life!