Post Op - Day 0

Check out who's out of recovery and on the ward! And not only that, is moving both arms and legs, clapping and making some sounds! Yes it's Superstar Alex 💪. His surgeon reported all went very well with no complications 💃🎉

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Day 8 - Smiles, walking and discharge planning

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So most people who know us also know about Alex. They know that he is incredibly sweet and loves a good hug. They also know that he loves to jump on the trampoline, play in water, listen to music and has significant additional needs. Those needs are as a result of a rare and tiny chromosomal duplication called Dup15q which was diagnosed around 7 months of age. So for the past 11 years we have been heavily involved with therapies, medical teams, support workers etc. Alex took many years to learn to walk and remains non-verbal; although he has very expressive eyebrows! For information regarding Dup15q please click here Alex remained seizure free until April 2021. Initially it was just the odd drop here and there. Alex would be eating and his head would suddenly drop forwards often hitting his plate. But he would continue with whatever he had been doing at the time like nothing had happened. I had read about atonic drop seizures in Dup15q and knew it was always on the cards for Alex. I ho...
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