Forwards and Backwards

I now am looking forward to a month of appointments and a large amount of planning needs to be done to get the best outcomes.

On Tuesday we are seeing an osteopath,the physio identified a tight upper spine months ago but it hasnt been worked on in any way, so I have decided to get a second view.

On Wednesday we have phsyio and I need to sort out boots for Joe his feet are far too small size 1.5 for us to get off the peg shoes that he can walk in he also has oddly shaped feet so we get this sorted asap. I am also hoping that boots will stop him rising to stand on the lateral borders of his feet not his soles.

On 10th June we are seeing cardiology for a scan and a medication review, I need paperwork for our holiday information on fluids restrictions and sun sensitivity with his drugs.

We are then at the childrens hospice from 14th to the 17th June.

On 25th June we have the biggy, we see his metabolic team, from this meeting we need a totally revised feeding plan and a revision of night feeds, he is basically getting to many calories from his milk and as he virtually refuses to drink anything else its giving me serious issues.

We need an update prescription that includes lancets and glucose monitor strips.

And the huge issue we need a care plan for use in an emergency at the local hospital which is both comprehensive and signed by a consultant, having had three occaions where he has had a temp of 39.5 and has had no antibiotics given we need something in writing before he becomes septic because no one listened..........

wish me luck......