I didn't realize just how long it's been since I posted on here. We've been extremely busy helping with the planning of the Poker Run & Spaghetti Dinner on March 31st. Be sure to go to our events page & check out all the cool things that will be happening soon. I'm especially excited about the NPC Awareness event on Feb 29th @ all the Ocala Publix's. It's pretty cool that World Rare Disease Day falls on her birthday this year :)
 Already this year is flying by. Julia is doing well. She did fall @ school today. I've recently started a log of her falls @ school because I'm having difficulty getting her any services such as PT, OT & speech in school. Basically she has to lose skills before they will help her. What they're not understanding is that if we wait until she loses the skills there will be no chance of her regaining them as it will be because of cell loss. Try explaining that to a cash strapped school system with rigid guidelines to follow as to who qualifies & who doesn't. Well, what they don't realize is I didn't get his far in Julia's diagnosis & medical condition by laying over & playing dead. I just have to find the right people & the right approach. We'll get it eventually, it just won't come easy, but I don't think I would know what to do if anything did :) Good night all, God Bless.