Alexander was born at full term, at home, and apart from being very sleepy and a poor feeder, he seemed to be well and was just perfect.
At 3 days old their was something obviously wrong and we rushed him in to hospital, where he was ventilated within a few hours and loaded with phenobarbital as he was having seizure activity.
We were transferred to NICU and for days they ran lots of tests, eventually getting the diagnosis. Alexander was not expected to survive off the ventilator, so he was extubated at home, at our request. He kept breathing, for days we were on edge, still believing we didn't have long, but he got stronger and we found out that he may survive for a year, 5years, almost certainly won't reach adulthood - & that he would likely have very hard to control epilepsy.
That, sadly, has been the case, and Alexander has many seizures every day, but he is strong, calm and content and just deals with them (probably better than we do). His condition (& the seizures) have caused brain damage, which means that Alexander is not mobile and cannot speak. He cannot move his arms much either. To people who know him well, he communicates with his facial expressions and body language - & like all children, definitely knows "NO".
He has had many painful conditions (bladder retention and spasms; leg cramps; severe reflux; food intolerances; hip and spine issues - more noticeably now, he has compression of his lower discs - L3:S1 and possible sciatica) and illnesses, including pneumonia. He is tube fed when unwell and when he is tired/in pain, but loves strong flavoured foods like bacon, curry and chilli when he is really well and alert.
He loves to be cuddled and have physical contact; he has shown interest in the various animals at the school farm and pets of family and friends; he loves a good story read to him - we love Julia Donaldson rhyming books, Harry Potter series, David Walliams books including Gangsta Granny and have even enjoyed The Hobbit, The Three Musketeers series, Treasure Island, The Railway Children, etc.
His other great enjoyment is Nature Documentaries, especially those narrated by David Attenborough, Blue Planet, Planet Earth and others.