“Too broad” my friend Codi says to me on New Years Eve as I tell her my resolution. But it was way too late into the night to really have any sort of meaningful conversation with me, I am sure at the time I thought it was meaningful, but by the next day it was …
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 …
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 …
*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 …
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 …
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 …
I truly believe December is the most wonderful time of the year. I love everything about it. I love the hustle and bustle, I must because why else would I still be shopping Christmas Eve Eve? I love the crabby people who you run across and the happy happy joy joy ones too. I love …
Ok I have never done a contest before, but in efforts to win Pepsi Refresh this month I am going to do one. My lovely friend Amy over at http://www.babiesnbags.com/ has offered two $25 gift certificates to her awesome online store in efforts to raise money for CDKL5 Research. Babies ‘n Bags is a local …
This morning I brought Ollie into Lily’s room while I was dressing her for school and he wanted on her bed, so I picked him up and put him on her bed next to her and he puckered his lips and made the muuuuu sound and pulled Lily’s hand out of her mouth and laid …
Calm Amongst the Chaos 