Happy New Year!

Happy New Year Everyone!

It’s been a long time since our last post. I’ll try to give a brief summary of what has happened since we’ve come back.

Lincoln’s classroom was visited by an Epilepsy Educator from our local Epilepsy Foundation. She was wonderful and so informative. I heard later from several parents that their children learned a great deal. This talk was a wonderful way to address the reason why Lincoln will be out of school this winter/spring and to bring epilepsy out of the closet (or “out of the shadows” as the epilepsy community says). Props go out to Lincoln’s teacher, who instigated this visit, to the Epilepsy Foundation who provided this free of charge, and to the Epilepsy Educator, who traveled out of her district to handle this particular case because she has a background in nursing and is familiar with status epilepticus.

It’s snowboarding/ski season for Lincoln and Eva. Both are doing AMAZINGLY well. Lincoln with adaptive snowboarding lessons and Eva skiing with me. Strength remains an issue for Lincoln. All of his instructors tell him that he needs to work out ( I say with glee!). I’ve been telling him this for years…but I’m Mom, and certainly don’t’ carry nearly as much clout as his instructors. Yes, he has CP, but that doesn’t excuse him from working out – it only makes it more imperative. Some of his muscles are tight and others are very weak, and the body of a person with CP ages artificially faster than that of a typical person. He needs to take good care of himself and start paying more attention to how he walks, his posture, stretching. ALL of his doctors, therapists, coaches and of course his parents have been telling him this for quite some time….perhaps he’ll listen now that snowboarding is involved.

Exciting news in this area: He was asked to join an Adaptive Snowboarding Team where he “rides” (that’s what it’s called when you snowboard – I just learned this). They compete nationally with the Special Olympics and the Paralympics. He was immediately flattered and excited …and then fear set in, nerves, self doubt….. He’ll do fine! The coach is one of his instructors and he isn’t expected to “ride”independently any time soon.

Eva’s skiing has improved immensely. I’d like to say that she’s all speed and no control – but after spending two days watching her, I really have to admit that she’s looking GOOD. Her skis are more parallel now and not “pizza” all the time. She’s shifting her weight for turning and stopping, she’s even “hot doggin” (which is adorable to watch!).

I will put up photos if I get my act together. Talked to Dr. Devinsky today. I’ll post that info soon.

..and a HUGE thanks to Andy, whose long hours on the mountain get us all free season passes!