We waited in angst for nearly four months for this appointment. It was early Novemeber when our Early On RN suspected that Caedyn may have cerebral palsy. It was dreadful news. I couldn't wait till February to share this information with Caedyn's neurologist so I called in a favor to our pediatrician, Dr. Schipper. They made this appointment as quick as they could get her in and we have waited up until this day for an answer. It was both a nervous and anxious feeling for us as we waited the past few months. Nervous because you don't want anyone to tell you your child has CP and anxious because we wanted a reason for her not hitting her milestones like "normal" children her age, but didn't want her to have CP. Make sense? Not really. Nonetheless, it was a long wait.
We met this morning with Dr. Nancy Dodge. She specializes in pediatric neurodevelopment and can diagnose just about any physical and cognitive condition there may be. She asked a slew of questions regarding my prenatal history, what milestones Caedyn has reached, family history, reviewed all her PT/OT and feeding therapy notes and did a physical exam. She asked us at one point, "is she always this good natured?" We smiled and had to agree. We are so blessed she is usually one happy little girl. After a thorough evaluation, she left the room and told us she would be back in a few minutes to talk with us. That was the LONGEST few minutes of my life. Literally.
When she came back in she sat down and hesitated. My heart was probably beating out of my chest! Dr. Dodge said she couldn't say that Caedyn had cerebral palsy. Not even an inkling pointed to her having the disorder. I was fighting back tears. Praise God! Her reflexes are very normal unlike a child with CP. She has some mild developmental delays and functions at about a 13 month old level. She cannot explain why. She offered up genetic testing to find out exactly what syndrome is causing her delays. When we asked if it would change her current treatment, the answer was no. We are doing exactly what we should be doing in regards to physical therapy. At this point for us, the testing isn't an option. It is likely she will have a long road of therapies and hopefully in time catch up to her peers. Dr. Dodge was uncertain about her long term development but did mention she could have a learning disability in the future. All I kept thinking was, "I can totally work with this". I know in time she will catch up. We left the office elated to say the least.
So for now, we continue therapy and work on strengthening her motor skills. And all those milestones parents take for granted, we celebrate as a huge victory.