A week of mixed emotions…

This week I have once again learnt to never take a moment for granted, as things can change in the blink of an eye. Edith went back to school this week and I have to say, it was a welcome relief. She loves school and we both struggle in the holidays. Routine is of the [...]

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 [...]