Winter

Its 9.45pm Joe is fast asleep on the sofa having one of his non specific sweats and I am tidying up awaiting grandparents arrival in the morning.

We have had a bit of a landmark here we have had Joe home for a whole christmas with no festive hospital admissions.

Joe is doing well as far as it goes, but he has valves in his heart that are starting to leak of course it may be nothing at all but it may also signal of the slow slide back into heart failure.

For me this christmas has been healing and a time to do things that we promised Harriet the year Joe was born the London eye (which broke down when we went on it last week) the christmas markets on the south bank the chance to do family things together.

We have had an amazing year with a trip to florida to meet other boys with joes syndrome. A trip to disney and seaworld. We have met the best doctors in the world with regards to dealing with this disorder and Harriets has learned she one sibling of many not one on her own.

Our respite is now 4hrs a week but only till March and Harriet will come back to full time home education in April as we look towards a move to the west country.

Life can still be very Hard, often made so by those who are meant to be helping, the physio who thinks hes just being lazy because hes not walking, the local hospital that dont have appropriate cardiac monitoring equipment and claim it cant be borrowed from the adult service, lack of communication all the time that leaves me as go between and secretary all the time, but onwards and upwards we go, we do so hope a move will make things easier and less stressful in the long term.

its been a good one! Long may it continue!