I remember sitting at my oldest healthy baby check up and looking at a form that asked if we were EFMP. I had zero clue what it stood for or that we would come to unfortunately understand what very little they do for family. EFMP is the Exceptional Family Member Program that is used across … More EFMP
“You know your child best.” “You are your child’s biggest advocate.” These are two sentences I hear so often from doctors, therapists, and nurses as they encourage me to advocate for my daughter with Angelman Syndrome. Recently, my daughter fell and hit her head. She was pushing her walker backwards and fell over it and … More You are Their Biggest Advocate
We have been so busy since our move to Vegas, I’m sorry I haven’t had a chance to update our blog lately. But hopefully I’ll be able to dive back in. Our list for Laura’s appointments is still so long though. Out of 30 days this month I have 26 appointments… My only … More The Busy Season
Imagine: Your daughter comes home from school with bruises on her body. No one said anything to you at pick up,no note, no email. You look at your beautiful kid and wonder what happened. You can ask your child but finding out the truth may prove impossible because your kid is nonverbal. So your only … More Why I Want a Cure
Something that I have feared is that Laura would take time away from Charlie. That I would spend more time trying to help her with her needs and I wouldn’t be able to give Charlie enough time and she might feel left out. It’s been a few months and I feel like I have a … More Shared Time
So we have had a lot of people asking so I’ll update. No, we don’t know where we are going yet. No, we have no idea when we will find out. And yes, I’m over it. We do know Laura’s developmental doc has talked with the efmp office about a week ago to help them … More A season of waiting
I had so much fun surprising my family with a visit home. While Germany has been an amazing home it is more AMAZING to be home. Today is my birthday and I get to see my youngest sister play a basketball for the first time, she is wearing my number. My heart is so full! … More Surprising my Family!