I am feeling so emotional today that I had to sit and take the time to write. Yesterday at church there was a beautiful young girl that spoke. She was born with Cerebral Palsy and walked with a walker for most of her...
It has been forever since I have posted and so much has happened. So much love, so much progress, and so much happiness. I wish I could say so many answers for our sweet little angels and I wish I could say we finally...
Cali had another 10 viles of blood taken yesterday to test for another panel of genetic diseases. This panel is the Ataxia panel...
Rick and I had our first meeting with the head of Adult Transition of Capistrano School District yesterday. He has been with the district and the program for over 30 years along with most everyone else involved. These people that run this program...
In high school I read the book Power of Now. Since I was 15 years old I have tried my best to live by the lessons of that book. The lessons are to live in the moment of right NOW and soak...
The countdown and preparation begin for Cali's second foot surgery this Tuesday. I am not referring to preparation that includes packing comfortable clothes to stay the night in the hospital or bringing my slippers to walk in the halls. I am referring to...
Cali needs a best friend too. As I sit with the school psychologist he asks me who Cali's best friend is? This questions hits a nerve in me more than any of the other questions on his never ending questionnaire. He runs...
Wow! Talk about overwhelmed and emotional. I am doing everything I can to hold it together but man is it hard. I cant stop worrying and projecting and feeling like I'm going to explode with tears. I have to tell myself to remember...
The hardest part of having a child, or in our case children, with a rare disease is that all we want to do as loving parents is help our little girls and we don't know how or what do to. No one can help...
I am well overdue for an update on our sweet little girls and when I say sweet I mean they both get sweeter everyday. I am so in love with our three girls!! We started our genetic testing finally! We met with the geneticist...