Charlotte’s last MRI was clear and we are currently medication free!!! This is the first time since she was a baby that she is on NO medications. The anti-seizure meds took three-months to wean and have made a significant difference to her overall demeanour. After praising her for her calm and generally good behaviour recently, she replied; “I know my whinges have gone away and I don’t know why?!” She is pretty intuitive and also asked if she would have to take the medication again if she was to have a seizure. Yes!!!

She had transition to school and orientation last week, as well as her ballet concert – what a different end to the year this is for her – compared to last year! She is well, eating a lot, growing a lot and trying really hard to get that working memory going and concentrating on concepts that you and I would probably breeze through. Thank goodness she is a pretty bright little girl otherwise the road ahead would be truly difficult.

Her next MRI is toward the end of January and I just hope that she can start school with all the other kids. She is getting use to the idea of big school, leaving us at home (it has been a long and intense attachment), and entering the world of learning. Things are so different compared to her world in hospital and it takes some talking and coaxing to get her head around this new phase in her life. I am so excited for her that I sometimes feel physically sick. What she has been through is more than most experience in their lifetime and it has shaped a very thoughtful, spirited, insightful and sometimes anxious little girl.


Beck and Rod xo