A bit like a unicorn or a mermaid…

Today is Undiagnosed Children’s day💕 To date we still have no definitive diagnosis for our Little E. At times, this is incredibly difficult. I’m not saying having a diagnosis would be any easier but it may give us some answers; some connections. What we know is that Edith is Hypotonic (floppy), she has developmental delay [...]

A day to remember…

Two years, ten months and seven days ago around this time Edith fell backward and bumped her head and had an hour long tonic clonic seizure. I was placing her on the floor and positioned her absentmindedly and she fell backwards between my legs and bumped the back of her head. She cried for about [...]

It’s never just black and white…

Yesterday we visited the neurologist to discuss the results of Edith's recent brain MRI. You may remember me saying that the MRI needed to be repeated due to a dispute between doctors as to weather the Cortical Dysplasia was there, or not? A week or so before Edith started school I had a call from [...]