A Lesson on Colpocephaly

This lesson is part 2 of 2 (hopefully) on Lane's brain. It took me a solid 4 months to be able to pronounce (Co-po-sef-a-lee) this diagnosis, and an additional two to spell it correctly. I still don't understand many things about this diagnosis. Just like his vocal cord paralysis and his corpus callosum hypoplasia...there is no known cause for his diagnosis of colpocephaly. 

To put it as simply as possible, when the mid-line (corpus callosum) of his brain didn't form correctly, grey matter formed in places to fill the gaps. Specifically in his occipital horns. (the back of his brain)

Normal looking (tiny) occipital horns

Colpocephaly occipital horns

The above MRI of colpocephaly is not Lane's MRI. His "horns" are not that large. His neurologist says that his case of colpocephaly is mild. While we are happy to hear the term "mild" it really has started to lose its shine. We have come to realize that the neurologist was accurate in saying the labels don't really tells us anything. We just had to wait and see what these diagnoses mean for Lane. We were told, by doctors and the internet, that many of the same set backs that are tied to the malformation of the corpus callosum are also present with individuals diagnosed with colpocephaly. Basically, we have a double whammy on all set backs. Many times individuals with this diagnosis have cognitive and motor delays. Some are minimal, others are extreme. 

What we know to be true about Lane currently that we can justly blame on his brain diagnoses...

• his eyes continue to be crossed--mainly his left one--surgery may be happening soon
• doesn't hold eye contact for long lengths of time
• he is at about 4-5 months old in gross motor development--we are starting to really focus on getting him to roll over and sit up
• he is at about 2 months old in fine motor development--can grasp with his hands, but not for long. Doesn't bring objects (other than his hands) to his mouth. Will occasionally reach for an object, but doesn't open his hands to grab.
• doesn't consistently eat orally

Lane has forced us to truly live in the moment. We are learning new things, experimenting new techniques and making choices we never thought we'd have to make. More importantly, he is reminding us to appreciate progress and helping us to remember to look on the bright side.