Monday, March 1, 2010

Sleep....whats that?

Wow. Just wow. I am exhausted. I would have thought that the worst possible symptom of Tuberous Sclerosis Complex was Infantile Spasms. Surely it is, but at this point I am realizing that it is all relative to the current situation. Remy's sleep schedule is




He has, for reasons I can not understand, decided that his two year old body does not need a nap during the day. I, for one, would not complain about said lack of nap if he would at least agree to a decent bed time. Wait, maybe not. See 8 pm bedtime....see Remy up by 2 am.


Apparently, this "normal" when it comes to TSC. "Normal". Thats a funny word. He is an amazing miracle of a little child, don't get me wrong. I would stay up for the rest of my life if it kept him from seizing, but holy crap. I mean, really?!

I need a nap.

Some nights, a little late-night-elmo is in order. He will smash his little face against the side of his playpen just to get a glimpse of his furry little friend.



  1. sometimes I don't know what I would do without that little red, furry boogers' help! haha hope he starts sleeping sometime soon!