I'm not sure I have ever explicitly mentioned this, but since H. has linear nevus sebaceous syndrome, it also means that she has left-brain hemiplegia. That sounds dire, I know, mainly because anything diagnosis which has the word 'brain' in it kind of makes everyone's stomachs do a flip-flop. There's a couple of things to know (which I certainly didn't) about this and about syndromes in general. Having been given the diagnosis of a syndrome is really just having a name for a particular group of medical issues. The syndrome itself isn't a disease, but a description. The actual physical difficulties that a person has are each their own 'thing'. Having a syndrome doesn't mean you will have every possible diagnosis that can go along with the syndrome. It also doesn't describe the severity of each of these diagnoses. It took me a while to wrap my head around what a syndrome is and isn't.
So, back to the hemiplegia. Because linear nevus sebaceous syndrome describes tissue overgrowth... specifically brain, bone, and skin... it is not surprising that brain overgrowth would have some complications. Hemiplegia is really just a fancy, Latinized name for something going wrong with half of the brain (hemi=half and plegia=paraliysis). In general, H. is very unaffected by her hemiplegia. She has very little noticeable difference in her use of body, including very good fine motor skills in her right hand (which surprised her neurologist). Where we do notice it the most is in her ability to access short-term memory and moving things she has learned from her short-term memory into her long-term memory. This is very frustrating for her (and I admit, me as well.) As we have been working on this, it has gotten much better, but every so often she still has moments where remembering is very difficult.
You know I have a little reading habit which includes reading everything I can about the brain. I know that the two halves of the brain need to communicate in order for optimum functioning. (We do a lot of things that encourage this cross-brain communication, believe me.) But one day while H. was struggling and frustrated with not remembering something, I decided to try on the spur of the moment a little experiment. While I was telling her correct information, I gently tapped her shoulders, alternating back and forth. I don't really have any scientific basis on which to say this, but it seems to be working. The things that were difficult to remember before I tapped her shoulders, were no longer difficult and she has continued to remember them. I don't claim that this is a cure-all for everything, but it is a big small thing that has really given H. a boost of confidence.