We saw a different neuro last week. I met Dr. N when I went into TGen and had a meeting in a conference room with a table longer than my house. I met 4 researchers who were interested in CDKL5. I don’t know how we are moving forward, but I was thrilled to speak with these guys and just …
I would like to retract my whole last post. I pride or blush myself on my honesty. I find myself relating to others when I am honest. But what is honesty truly? Like say I don’t like your dress and I say I don’t like your dress, then follow it up with what I am …
Spring breaks are long here in the chandler unified school district. Very long. They go to school for 9 weeks and then take off 2 weeks and 2 days til summer and that is when this whole thing pays for itself, summer break is only 7 weeks. Boo ya. Is that how to spell boo …
Up until a few years ago the mall was where we went. Like every weekend. I remember my mom dropping me as a teen and we walked the place for 5 hours. 5 hours! With maybe $20 in my purse. We met boys there, ate pretzels and cookies. We rarely even bought anything but took …
I always want to sing like Annie “In NYC…. ” I hope you all do the same after reading the title. Oh I love Annie!So I have been back from NYC for a week now and wow I am back to a very busy life. I can’t believe I was able to skip out of …
Today is my husband’s 31st birthday! He is 31! I remember I couldn’t wait for him to join me in my 30’s, it would make us feel like we weren’t as far apart in age if we were both in our 30’s, but who was I kidding, age is just a number… after this life we’ve lived together we must be …
You ask me what do I crave the most from Lily and I will tell you it is her voice. Words. Humor. Stories. Her take on situations. Her story, her day coming from her lips.I have always said and will continue to say that CDKL5 robbed the most important part of human interaction from her …
One day scrolling through my news feed as I often do, and I stopped at a black and white photo of a snugly chubby baby sleeping with the words “slow down mama” on it and I stopped and looked hard at this picture. These days anything with a baby is gonna make me stop, it doesn’t really matter what …
So often you hear people say why does God let bad things happen? It is a lifelong question that you will hear a ton of different answers to. Bad stuff happens. Genes get messed up causing a devastating result. Marriages fall apart. People die. People survive accidents but live the rest of their lives dependent …
Spoiler Alert! Cherie Dell comment #22 you are the winner!!!! But you didn’t leave me your email so can you please email me at knothdurft at gmail and get me your info and I will love to get you that necklace! 🙂 Thank you everyone!!! Let’s do it again real soon!
Calm Amongst the Chaos 