supperstottie, good news and some progress but do not race round like a mad thing to try and tidy the house, I know when I have a visitor the temptation to tidy for my own pride is overwhelming but just let things go, because even if you are not well enough or able enough to tidy but make the effort for his visit he may assume that you can manage all the time. I know this is an assumption on my part, most of the time I know we all struggle with just the smallest of tasks but it's just getting over that feeling of needing to tidy up for a visitor, just leave it all, and if you don't feel well enough or able to dress then don't, stay in your p.j's if that is what you would do if you were having a bad day, what I am saying is be honest but don't exert yourself and go to any effort just because he is coming. keep us posted on how the visit goes, and good luck.
boyleuk, when I applied for my sons dla in January, he had already been absent from school for a year and the school had letters from his consultant saying he was too ill to attend, I am up most nights with him, sometimes all night (he is 16) as he can get quite poorly, he was unable to go out with friends or walk very far etc etc. even with all his care needs and consultant paeds letters he only got lr care and lr mobility based on how his illness affects him, we did not have eds dx or atrial tachy & pots dx at that point, but the actual dx makes no difference, it is purely how the disability/ illness affects/impacts on daily living. It is unfair that the dwp only took the schools info into consideration. as she is only 5 do you still have a health visitor who could write a statement, also it would seem that they didn't take into cosideration care needs at night. Also is she able to walk/run without pain or would this cause further injury, one of the other points of evidence is fidgiting,tiredness, help with fine motor skill, have any of these been picked up at school, as barking said assembly and carpet time are good indicators of a problem, perhaps the senco could do an observation of gross motor and fine motor skills along with ability to sit in chairs or on the carpet and how she supports her body when doing this,also p.e is another point where a problem may be noticed, balance on equiptment, falls stumbles. Does she fall over regularly at playtime, I think it would be perfectly reasonable to request this (I spent many years teaching children with special needs and an observation of this sort is not unusual) The school may see her behaviour as normal but clumsy ie: a child that falls over a lot or fidgits too much but of course we know that those are all part of the hms package, if she does have these problems in school then it might be worth them reviewing what they have written about her, it might also highlight any support she needs during the day. One of the problems with my son was eating using a knfe and fork, his fingers bent back so much he was unable to use cutlary effectivly and so didn't eat very much at all, he has adapted cutlary now and various ot excercises to build up hand strength.