Back in September I wanted to escape what the big bad wolf did. I didn’t want a staring role in our family anymore; I was willing to settle for character actor. I just needed out without really checking out. So I took a job at a bar/grill as a server. I hadn’t waited a table …
*JUST* because there may be noOnce Upon A Time that does not mean there can’t be a Happily Ever After….
I called University of Chicago’s genetic lab department because I wanted to know why Lily’s diagnosis was so plain. A deletion involving exon 1 on her CDKL5 gene. Most other CDKL5 families have a far more intricate diagnosis and I was jealous. OK probably wrong word choice, but I did want to know more than …
Yes that is my title and I mean it. Suck it seizures.Last Tues we went gluten free with Lily, not for seizures sake but for overall health and hoping for a little more awareness/alertness (and possibly help with tummy troubles). It is going well, it just costs a few more dollars and she pretty much …
Each month after finding out the Pepsi Refresh Challenge results these kids looked like this: But guess what!!!!! SOMEONE didn’t play fair and was disqualified from the Pepsi Refresh Challenge AND guess who moved up into the top 10 for the month of October? Yup! That is right! Us! IFCR will now receive $50k to …
When we said goodbye to 2009 we said 2010 couldn’t possibly be worse than its predecessor, we were hit hard financially considering our income solely survives on construction. Mostly new home construction at that, and we all know the crash we had. We knew times were still tough, but things had to get better, right? …
Emmie you are certainly missed. We were watching family videos last night and we saw several taken at FBC (Lily’s pre k) and Emmie was on a lot of them. Smiling, “sledding” on snow day, dressed as pretty as possible. I can’t imagine the heart ache her parents face each day not able to care …
Lily has to see the eye Dr. every 3 months while on Sabril. It can cause tunnel vision (gotta love the side effects each and every AED brings) and the Dr. has to check for nerve damage every single visit to make sure she can stay on Sabril. At the last visit I mentioned I …
2010 you brought me some of my darkest hours. brought deep pain. you brought so much change. change that never would have came without that darkness. so while i will never say i ever liked you, i simply survived you. but i am better because of you. 2011, let’s not be so deep. keep it …
Yesterday I was talking to Andi about guilt. I threw the word out there and she questioned what it was. I explained it as a feeling you get in your tummy when you know you are doing something either wrong or not nice. She said she understood and that was the end of the conversation.Cut …
Calm Amongst the Chaos 