Today is Undiagnosed Children’s Day. Did you know that children who have no formal diagnosis are called SWANS? Syndromes Without A Name. Most of the time I’m not troubled by the fact that Edith is officially undiagnosed. Since birth, Edith has only ever shown progression and I think this helps me a lot. However, it’s [...]
So it’ll be 5 weeks tomorrow since we started our family lockdown. Edith’s school wrapped up on Wednesday 18th March and she didn’t attend that day due to waking at 4am and my nerves being shot to pieces. I am still struggling to get my head around this whole thing to be honest, I mean... [...]
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 [...]
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 [...]
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 [...]
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 [...]
The views and opinions expressed in this post are my understanding of this project and not necessarily 100% accurate. The process in which we went through may differ from others.