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... [...]
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 [...]
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.
So next month we are jetting off to the warm shores of Alcudia in Majorca. To say we need a holiday is a massive under statement and the excitement is now beginning to set in! We booked this holiday last August so it has been a long time coming as our last holiday was January [...]
Sorry, it's been a while since my last post. Edith was discharged from hospital on 18th April after 9 days. Life since our discharge has been somewhat different and to be completely honest, a massive struggle. When you are mum to a new born and you are first discharged from hospital there are a lot [...]