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.
Being born with physical difficulties means that there is very little Edith is able to enjoy. She has a short attention span and will only tolerate a small amount of T.V in one sitting and is very limited to what she can play with independently. Unlike most children Edith is not able to run around [...]