At first everyone said I had the perfect first baby, she was so happy & content. She ate well, slept well & was such a little cutie.
Then, at 5 1/2months old, all that changed from a simple eye roll not much different to a typical baby falling asleep from just having a bottle eye roll. In April 2011 she was rushed to hospital having what was to be the first of many seizures.
After just over 2 days of trying to stop the seizures with no luck she was sedated & ventilated in PICU. CT scan, bloods and lumbar puncture came back clear. Finally an MRI gave us the answer, it wasn't just really bad epilepsy as we had hoped. Her brain was completely malformed & smooth, barely compatible with life so doctors doubted she would live to the age of two.
Over the years we've had hospital admissions as new types of seizures emerge, been weaned on and off new meds and increased meds time & time again. we've even been told more likely to be planning her funeral than birthday party one year as nothing can get full control of the seizures.
Seizures have no pattern, warning or predictability. Sometimes it's like she's not even aware they've happened so carries on others cause crying out as if in pain. Some cause abilities to be lost so she can't even have a drink or smile, some cause inability to sleep, others knock her out.
She is unable to walk, talk, do more than press a button or shake a rattle with her hands, is doubly incontinent, uses a hoist lift, takes daily medications and has a soft food diet & thickened drinks. She has to rely on someone for everything in life.
Some days the seizures are barely there others can be well into the double figures with five different types of seizure activity to watch for. All we can do now is wait and see. She's exceeded doctors expectations by far, but we're never far from being reminded that she's classed as living on borrowed time as each seizure could be her end.