Blog

February 11, 2013

HOPE

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...

October 24, 2012

WE CAN HANDLE !

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...

June 16, 2011

Warrior and Princess Cali- updates

Cali had another 10 viles of blood taken yesterday to test for another panel of genetic diseases. This panel is the Ataxia panel...

June 9, 2011

What is in store for Cali ??

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...

April 3, 2011

From NOW to the Big Picture

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...

March 20, 2011

Here we go again!

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...

March 15, 2011

Who is Cali’s best friend?

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...

October 12, 2010

overwhelmed and emotional but still smiling

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...

September 14, 2010

IT’S TIME FOR A CHANGE! IT’S TIME FOR ANSWERS!

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...

September 1, 2010

Update on our sweet beautiful girls

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...