Tasha is adopted so we only know the information from around 3 years old and I choose to be sensitive to the information I share to others in the years she wasn't yet a part of my family. It's her story and as she is non-verbal and currently still learning to use AAC to communicate I don't want to share what is only her story to share.
However, at three years old she was very malnourished and unwell. She always found eating and drinking very hard and she was becoming very malnourished again after a painful hip operation. She has an unsafe swallow so had a g-tube placed which has significantly improved her quality of life and has enabled her to grow and put on weight. When Tasha was 11 years old our adoption was finalised and she officially became a part of my family!
Her epilepsy became uncontrolled when she was around 10 years old and she started the ketogenic diet. The ketogenic diet was the thing that brought her out of status epilepticus, where over 7 different medications had failed. At this point in time she had spent over two weeks having more than 1 seizure per second. This therapy decreased the amount of seizures she has each day to around 10 a day (on a very good day). She still has lots of seizures, and sadly we have lost quite a bit of seizure control in the last 3 months, however, she never ceases to amaze me. She is brave and resilient and even with seizures and chronic pain from her progressive scoliosis and failed hip surgery she continues to progress with her communication abilities. Her smiling face in the morning when I go to get her out of bed is the very best. Even after many sleepless nights caused from seizures and painful dystonia she always seems to find a reason to smile as I sing her good morning song to her in bed.