Alex's Callosotomy Journey

So quite a bit has happened in the last 2 weeks but I'll try and do a brief summary... Alex's recovery continued: - walking improved with the assistance of Physio Julie and Kangaroo ankle-foot orthosis  - Appetite improved and he was eating well again - Seizures were almost non-existent except for the occasion 'mini head-drop' often around the time medication was due Matt's father came to visit from the UK which was lovely as Alex has a special bond with his grandad And then on Sunday night Alex became very unwell with Covid. For the first day he had a temperature, shivers and was pretty unhappy. On day two the temperature had gone but the vomiting commenced.  We called an ambulance on Tuesday as we were really concerned about him. They offered to take him in to hospital but as his observations were fairly normal we decided to persist at home for the next few days. We used a pump to administer a slow rate of feed or hydration via ...

There's no doubt it's good to be home and back with family.  The first week at home however was not without it's challenges and a hefty workload which I had to face on an empty tank. Besides being exhausted following a number of intense weeks even prior to the lead-up to Alex's surgery I also managed to get sick with a virus that knocked my energy levels to the ground. In amoungst this were the usual challenges of daily life but I suddenly found myself managing a whole lot of other things; many of which I hadn't bargained on such as: - working through complex new medication and feeding regimes - supporting the support wokers with all the medical, equipment and functional changes - arranging the December and January support worker rosters...and then realising that I'll be loosing 80% of my workforce in the new year 😳...enter slight panic mode and re-evaluating my entire life! - loosing my shit with one of the support worker agencies who really doesn...