This is the overall view of this week with my Son.
Spoke with school about Lewis seizures. Making sure teachers are not construing behaviours caused by the Medications, as bad behaviours.
Spoke with Disability Children's Social Worker. She is retiring end of month. Visiting next week to say goodbye. Who will we get now?
Spoke with the Hospital Epilepsy Nurse re Lewis's seizures. Results of a recent MRI Scan.
Yesterday my Son two Tonic Clonic Seizures. Two doses of rescue medication. GP out to check breathing and Stats. Dealt with this condition with my Son 15 years. If another one had occurred 999 and ambulance. Sick and slept most of day. The toll on body must be horrendous.
Today, he has gone to School. Very pale. Very tired and lethargic.
Today mum catching up with everything that should have been done yesterday.
Our lives are unpredictable with these seizures, so we take each one as it comes. The unprecedented enormity of Epilepsy is so much more than just a Seizure. It's a very mean and nasty condition. Through it all Lewis manages to keep his brilliant sense of humour.
It can't be ignored any more. Funding has to be made available globally for researching by Scientists. Epilepsy is not Normal and should not be Normalised.
The neuro surgery helped greatly no doubt. Now the hormones kicking in.