More surgery

So hi everyone unfortunately Luke's 4 new cysts have continued to grow and I have been told he will have to have open brain surgery soon. This will probably be in London and just waiting to hear from surgeon based there. I have been told this is going to be the most serious surgery Luke has had. A biopsy is to be taken to try and find out what these new cysts are and why growing so fast. We have been given a bit more support via direct payments from the la but not enough hours and direct payments means I have to find the carers myself which is very difficult. So even though have funding still do not have carers in place for the hrs the funding is for. Still do not have continuing support that is needed for Luke. I have asked for a meeting to have support in place for after the surgery but the nhs and social services have ignored this request and nhs replied with look at after the surgery! This happened before and we ended up having to stay in hospital as no proper support at home so keep watching. Thank you everyone for your support.