Living with Cerebral Palsy

I can’t believe there aren’t more stories here, but I wanted to share mine.

My son Matthew was born 12/15/06, with very low birth weight after a very long labor. There was no indication during my pregnancy that anything was out of the ordinary, and my prenatal care was excellent.

At about 6 weeks old we realized Matthew was not holding his head up the way most babies do - his head was constantly resting on his right shoulder. After a quick consult with WebMD, it became clear he had a disorder called Torticollis, where the muscles in his neck were damaged and during the healing process they tightened up so that he couldn’t lift his head.

We took him to his pediatrician who confirmed the diagnosis and ordered physical therapy. We were blessed with a physical therapist who knew what she was looking at and pointed out that along with the Tort, Matthew had several other “oddities”. He had low muscle tone all over, and his right hand was fisted more than it should have been. He didn’t use his right arm or his right hand normally, and his right leg is slightly rotated to the exterior and his right foot tends to point inward.

After sending these findings to his pediatrician, we were referred to a pediatric neurologist who diagnosed him with Spastic Hemiplegia, a type of Cerebral Palsy. He did have some good news for us, he said that Matthew would more than likely walk without any type of manual aid at all, but he might need some orthopedic attention to get his right foot going the right way.

We are awaiting an MRI appointment (I’m more worried about that than I am about the CP!!) and continuing with his physical and occupational therapy. He is making improvements all the time, and he’s an absolute delight to be with. I struggle with the normal mommy feelings of guilt from time to time, and with trying to adjust that the “Perfect Baby” I was expecting may have some difficulty with things that normal kids have no problems with. However, we are getting along just fine, and I wouldn’t trade this experience for anything. My motto now is “Special Needs kids are truly Special”. I would love to hear other stories, and would love to find a support group in my area (NE Florida) for other kids with CP!