Skip to main content

Posts

Featured

Search Results Not Found

For years I found myself searching for answers to the questions of Charlie's developmental disabilities. I wanted to know the cause and find THE solution. As if disabilities are that easily "fixed" or "repaired" having a simple solution. I took Charlie to therapies and specialists. He had EEGs, EKGs, MRIs with and without contrast, video swallow studies, sleep studies and medical diagnostic evaluations. All of these yielded the same response. "search results not found". It was like typing keywords and truncated subject matter phrases into the search engine at the local library or Google only to have nothing returned. In my mind at the time, I thought more extensive testing would find the hidden answers we sought. So we went down the path of genetic testing. First was Angelman syndrome because Charlie was always so happy and smiling. Then there was Fragile X because of his thin frame and stature. There was the microarray and Prader Willi after Charlie w

Latest Posts

Sowing seeds of hope

The Release

Fine motor fingers and gross motor toes

Pandemic Paradox

Not quite as I expected

In Search of Feeding and Changing Spaces

Championing Charlie

We grieve, we grind and we hang on to hope

Some assembly required

On the anniversary of...