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 [...]

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 [...]

An Angel of Sorts…

At the end of last year I began another bit of "Dr Googling" after speaking with a mum about her daughters diagnosis of Rett syndrome. I noticed that Edith mildly embodied some of the characteristics or symptoms and began to question if she had ever been tested. Rett syndrome is most common in females and is [...]