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 “fellow” doctor who collected all the information I was presenting on Harper’s […]

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 – “Lock Jaw.”  She spent the session teaching me […]

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 successful at it.  We had a great ski trip with the family in Breckenridge, Colorado, first one in […]

Over time I have been gathering data on Harper and have noticed two patterns in Harper relative to her seizures: 1) has been illness hence the current attempt to fund the CDKL5 seizure research project with Dr Jensen and her team, 2) has been a relationship with diet. For 18 months, 10 months prior to […]

So since it’s Christmas we are thinking of Jesus and presents!  This cannot be escaped despite societies efforts to turn it into Happy Holiday rather than Merry Christmas.  In that, I have thought about Harper and our life as such:  Mind you these are my words of summary! Jesus came to earth to die on […]

Today those that stayed loyal to their school determined to obtain an education re-lived the emotions from the 2007 horrible Virginia Tech heartbreak.   I am ending my day hearing of this terrible tragedy and wondering what is wrong with the children of today?  Is it seriously getting so bad that parents are unable to […]

I have noticed over the last few months many articles discussing a generation of people who feel a since of entitlement.  As I write this the Christmas song playing in the background is “Santa Baby” by Eartha Kitt, funny!  As I read an email sent today by a friend and supporter of Harper I reflect […]

Fact, if all the people that went and watched the new Twilight movie would donate their movie ticket money, we would be well over our goal.  Twilight the movie supposively is causing seizures. Our baby and many others have them without going to a movie theater.   http://www.dailymail.co.uk/news/article-2069628/Major-American-epilepsy-group-warns-seeing-latest-Twilight-film-caused-seizures.html   If you were going to spend your […]