Its been so long........

Its been such a while, life here has been getting used to having Joe home and home education. Considering the review and where as a family we go from this point. Its been good bad and down right bleek.

We have learned more about Joe than we ever thought possible and learn more very day, some times I here myself speak and thinks who is this person, I talk medical language as easily as educational speak now.

Joes doing well at the moment but we can never count our chickens, since a last wrote two boys world wide have died of this disorder one only 24hrs after becoming ill, its scary and you live on a strange knife edge.

We have also found out how poor and nonexistant support for parents with chronically ill children is, and if you want anything you have to fight. I still find the well you get DLA Carers and tax credits. yes but that means we are £30 per week better off than when we were both working, I gave up mu Job and Mark now works close to home dropping from goodish pay to minimum wage and when you calculate travel to appointments, specialist equipmenr thats not provided any childcare, or heaven forbid you want a nights sleep, it eats into your tiny disposal income.

And guess what we then did to amke money evn tighter thats it we arranged for Harry to spend fifteen hours a week at a small independent school, so I can do Joes appointments without her in tow, we are at the hospital four mornings a week at the moment, its an immence juggle.

So harrys at school for 15 hours and we are doing 15 hours on top of that at home shes flown throught the montessori primary curriculum is reading well, writings coming on and shes doing just brilliantly we have done lap books on Rochester castle, volcanos and water and rivers in the last six weeks.

its busy but we are doing okay.