Plodding along

Well first of all sorry that it has been a while, to be honest I just haven’t had the energy. The boys are good. Danny has started back on his swedish nose and as we’d hoped he is coping fine with it. Now that the winter is almost over it would be nice to see what our little miracle can really do as he has had no further infections now for roughly 3 weeks which is great. From this week Tom and I will also have Dan at home on Thursdays as I have a second person so that will be good for them both. Tom is looking forward to it lots, he never likes it when his little brother has to go back.

Tom is on form in himself, told me the other day when I was ringing PICU that Danny was fine and he’s been on his ventilator all night and his sats have been 95%. He is such an old man at times and he makes me smile. He is at present playing with his lighting mcqueen race track because he got ‘chick hicks’ for doing 3 little poo’s on the toilet. The most progress we have had in this department for ages. Well done sweetie.

Rob and I totalled up the other day what we have spent on getting to see our son at the QMC, it is £2,800 and that is just in a 14 month period. That doesn’t take into account what we have spend on food because they have no cooking facilities or what we have spent on childcare for Tom because I haven’t been able to be at home with him and we have had no help whatsoever with this cost. Daniels disabilty living allowance has also been stopped because he is considered to still be in hospital even though he is out of there most of the time. We can not get any help at all, we are just expected to foot the bill even though it isn’t our choice for him to be there.