This kid. This here is Mikaere having a chat with his neurologist, who last saw him when he was teeny tiny babe (we’ve been under a neurodisability service to manage any epilepsy related care, but that service is now in crisis, so I made a fuss and now my boy has a neurologist).
The appointment didn’t go quite as I hoped (not because of the neurologist, who is lovely, but because of the restrictions placed by the trust and the NHS which make care for intractable seizures difficult). BUT we have a work around and I’m hopeful.
The absolute highlight was my boy having a chat with his consultant. Honestly, the last time she saw him he was basically comatose, so for her to see how far he’s come, and what an absolute joy he is felt really validating.
These small moments of joy, hey? I’m living for them!
#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #neurology #seizures
