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 [...]
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 [...]
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.
Edith and I were discharged from hospital the day after her birth with all the boxes ticked. I often think of the 5 weeks of blissful happiness that followed, that's how long it was before we were told that something was seriously wrong. Edith fed well and seemed extremely settled at home. She was suffering [...]