by thehowardhouse | Jan 18, 2012 | Harper's Updates
It’s everywhere at the moment! I hesitate to post specifics about my theory at the risk of ridicule from other CDKL5 familes following Harper. However, I will disclose my information anyway stating that Harper is in fact at the moment 1 of 1, not 1 of 300 as...
by thehowardhouse | Jan 17, 2012 | Harper's Updates
It’s in God’s hands now! May we be accepting of the answer provided with feelings of gratitude toward those Doctors who provide them regardless of what the answer may be. We saw the metabolic team this afternoon. This morning I met with the...
by thehowardhouse | Jan 13, 2012 | Harper's Updates
Yesterday morning I took Harper to her therapy session even though I knew it might not be a very productive session. I mentioned we were having feeding issues and the therapist began to feel around and evaluate Harper and said I think she might have TMJ –...
by thehowardhouse | Jan 12, 2012 | Harper's Updates
It’s funny, people ask “How’s she doing?” and my response is “Oh we’re doing all right!” But in my head I’m thinking “WHAT?” We are doing our best to stay positive everyday and thus far have been...
by thehowardhouse | Dec 27, 2011 | Seizure Research Project
THANKS TO HOPE4HARPER’S PARTNERSHIP WITH FOUNDATION SELENA LUTTE CONTRE LA MALADIE-CDKL5, IN SWITZERLAND, WE HAVE EXCEEDED OUR 2011 GOAL OF $100,000 and the seizure research project with Dr Francis Jensen and her team at Children’s Hospital of Boston will...
