I haven't blogged for ages, and almost can't bring myself to now.
In the period since my last entry, things had been going quite well. Tiddler had started to eat foods such as toast, strawberries and tomatoes from my hand. She was discharged from the Neurologist last week... She has fabulous bright pink Piedro boots and doesn't mind wearing them.... and she can stand for short periods when wearing them!
A few weeks ago Tiddler had an appointment with the Occupational Therapist. The OT asked us to come back to see her more senior colleague as she was unsure of a diagnosis - Tiddler has always thrown the health professionals that treat her!
On Tuesday, we went back to see this senior colleague. She observed Tiddler playing and moving and concluded fairly quickly that she has a Sensory Processing Disorder. Specifically, she is Hypo- responsive in 3 different areas. In particular, she is under responsive when it comes to the pain sensation. Apparently, this is "extreme". Obviously this is pretty serious. The concern is that she may harm herself and we will not know. She stressed on me the importance of keeping her safe. The cushions on the floor have to stay!
As she uttered these words I could feel the tears coming, I couldn't suppress them. It really feels like one step forward two steps back. I worry that she may have already harmed herself and we didn't know, I worry I have neglected her, I worry I have let her go hungry, I worry that my poor little girl has been living in a black world for the first 12 months of her life and we didn't know.
Part of the problem is we don't fully understand what it all means: both for now and the future. I have started reading a book that was recommended but I will admit we are in complete shock and struggling a little to accept this latest development.