We were seriously concerned that Jude’s IS had returned but the EEG says not. There has been no improvement with regards his myoclonic seizures but the hyyps have stayed away. For us, this is good news for now – Epilim, for the myoclonic seizures, is to be increased over the next couple of weeks.
Generally, Jude is rolling along nicely – 3 hour journey to Brainwave today and only once did he get upset 5 minutes from journey’s end and that was just him asking to have his nappy changed.
His weight is spot on and we feel that justifies us removing his nasogastric feed and resisting the G-tube – isn’t hindsight a wonderful thing?
Jude’s head control is getting better all the time and yesterday, for the first time (and with his physio in attendance), Jude deliberately moved his hand to mouth. This isn’t usually a celebrated developmental milestone but when it doesn’t happen the consequences are wide reaching. Not being aware of his hands and arms means Jude has never played with toys, hasn’t fed himself, hasn’t figured out the role of hands and arms in crawling and sitting up, can’t point at what he likes or wave away what he doesn’t like. He also hasn’t stuck his fingers in the electric plug socket, the DVD or smeared his mucky paws across my TV screen. Oh how we look forward to those days, although maybe not the plug socket.
Jude meet your hands, hands meet Jude.