Still waiting but definitely better with both good & bad news!

Quick update to everyone who has kindly supported Luke & I. At the moment the local authority has finally agreed support is needed yet still not implemented it! I am still having to find carers myself via direct payments & at moment are being helped by care agency Family Support Wales which I had to find myself. Still waiting for signed & sealed care plan & program to be in place. Yesterday we saw the neurosurgeon who gave both good & bad news. The 3 baby cysts seem to have shrunk a little bit & the 2 other cysts are being maintained well by the shunts as at present the hydrocephalus. However the surgeon has seen a further deterioration in Luke. We are seeing the neurologist next week & hope to get some support such as suggested by the neurosurgeon ie neuro-rehabilitation & a referral to a neurologist who has more experience of Nero-disability.  Luke has deteriorated & no longer has the mobility or as much energy as he once had. We need a pain specialist too who identifies pain! Thank you all for continuous support for Luke & I xxx