Lily suffers from CDKL5 disorder. No new news to all our friends and family, but it is June and this was our first time acknowledging June as CDKL5 Awareness month.CDKL5 disorder sucks. Really really sucks. Takes away everything you every thought of your child’s future. It takes hopes and dreams and reconstructs them into something …
Ever wonder what your 9 year old daughter is thinking? Has she ever gone away for a weekend leaving you longing to hear her voice again? Have you ever wondered what really made her smile? Ever think back about when she was an infant, the way she made eye contact with you while you fed …
I’ve been wanting to update after our week away, but we have not slowed down one bit yet. But I have some time, Calliou is entertaining Oli and the girls are in school so finally here I go. 3 words to describe the past week is Blessed, Overwhelmed and fabulouslyfun (my blog, my rules). Blessed …
Andrew and Tanner (my nieces boyfriend) pulled into Ft. Collins last night and stayed at his brothers place. They left Greer at 5:30am and made it to Ft. Collins by 5pm. I have to say that is why I did not want to drive with him, I can imagine they never even stopped to pee. …
Seizures suck. They really really suck. God, I hate seizures.We went low on clobazam again, my fault. We get it from Canada and every time I call to order it they will call me back the next day on my house phone, I get the message after they close, call back the next day and …
We went to Greer for the 4th of July weekend. We invited some good friends of ours and their kids and we had such a wonderful time! Greer did have some devastation, but it is far more green than not. I will upload to flickr, it is easier that way.My parents had bought the only …
I am so proud to have been a part of this wonderful charity event for Phoenix Children’s Hospital and so thankful they interviewed me and let me “plug” CDKL5.Watch and see how cute the kids are all in the fashion show!A couple days left, keep voting!!! Lily had 2 large tonic clonic seizures today amongst …
Wow! What a weekend! Andrew and I had a little “staycation” in Scottsdale Friday night, our anniversary was Wednesday August 18th and Grandma Cheryl was here in town to help out with Splash for a Cure. We took advantage of her to watch the kids and advantage of the awesome rates you can get at …
2 days until the big day! The day I have been stressing out about for the last 2 months! I am excited, nervous and well freaking out. I am sooooo not a party planner, I am not someone who asks for anything. This is every bit out of my comfort zone, yet I’m amazed at …
Calm Amongst the Chaos 
