Part 1: Birth to 6 months, Concerns arise

Kai Samuel Lucas was born on April 7^th, 2009. He was born with no complications at 9lbs 3oz and 21.5 inches long. He was such a big boy! We were released from the hospital the next day. I brought Kai back to the hospital for a weight check a couple days later. He had lost more weight than usual, so the nurses told me to feed him every couple hours and sent us home. We went through that same process for a couple of weeks. I kept trying to feed him, but he kept wanting to sleep. It didn’t seem too alarming to the hospital staff, so I wasn’t that worried. I was not breastfeeding. It was too difficult to monitor how much he was eating by breastfeeding, so I switched to formula at three weeks. The ABC clinic where I was taking Kai did not see infants after they were two weeks old, so I had to monitor his food intake until his two month checkup.

Kai’s two month checkup went fine and it seemed like he was on track. His four month checkup went the same. He was rolling over and hitting all his developmental markers. As Kai approached five months old things started to slow down. Kai stopped rolling over and was still struggling with little to no head control. My neighbor brought over another five month old for us to meet, and I knew right away that Kai was different. Kai was my first child, so the comparison with another child his age really brought his developmental delays to light. My neighbor was standing in my living room with this little boy sitting in her arm holding his pacifier in his mouth. At the same time I was sitting on the couch cradling Kai in my arms like a newborn.

After I realized there might be a problem with Kai’s development, I started asking doctors about it. I soon discovered that it was not going to be easy to get someone to listen to me. This would be a theme in our life for months. I first went to his pediatrician to raise concerns.  Medical professionals reassured me that he was fine. I decided to take him to a different office to see a new pediatrician. When I told that doctor that I had concerns with his development, she told me that (without even touching Kai!) she is not concerned unless the children aren’t walking at 18 months. That is just absurd! Was she saying that if Kai could not even hold his head up or roll over at a year that would be okay?

I thought about where to take him next and decided on my family physician.  Then I heard about a local office that offered an early intervention program with physical and occupational therapy for infants in the area. I called the office and asked them to evaluate Kai. They agreed to do it without a doctors request. They told me that the evaluations they do usually come from doctors’ offices, but I told them I couldn’t get a doctor to say something was wrong. It was frustrating, and I was thrilled when they agreed to see him.