Sorry I didn't update about the housing officer visit did I? Well the social services OT came too.. which was helpful.. and the visit was from housing officerS (in duplicate!) which I suppose was for her own protection in case I turned out to be some out-of-control violent, benefit-claiming alcoholic drunken minger type.. (give it time.. ) So there was quite a crowd of us!
Seems the 'new' details (from assessment re-done in January) were not being taken into account.. although this was not confirmed in so many words.. but apparently they were 'confused' as to why the original assessment was so different on paper from the January 06 one. I said 'well one call to me would have sorted that out.. I would have told you that the first assessment states what Alex really needs from a house.. but is never going to get unless we have a lottery win.. and the January 06 one was an 'and in the real world' type assessment aimed at getting us re-housed into something that would better suit his needs than this house.
She said they were wary of putting people into housing that is not really going to suit their needs.. I said I understand that but anything would be better than this and if it was adaptable then at least we would be moving forward. There was then a big discussion with the OT who was very good and I'm glad he came.. and in a nutshell I do at least feel that things are moving forwards at last.
They also 'toured' the house.. well.. looked at the DS's room and the bathroom.. and I took the opportunity to inform her about the poo scenarios (even though pride has made me go out and buy copious amounts of Shake n Vac so as to disguise) the vague lingering poo smells that had been prevailing all week).
Another thing which happened is that on Fri we had DS1's annual cystic fibrosis review at Kings College Hosp (he is seen every 2 months more locally but annually in London) and to my shock (being as DS is so strong and well) found out that his lung fuction is not really quite what is should be. This is the first time we have ever been told this so I am full of dread and so is he because he has avoided IV antibiotics until now (he is very needle phobic) and now it may be on the cards.. although may not just yet - (and IVs will of course not only scew with his head but also with his swim training scehdule which is the one thing that has kept him so well for so long) But they need to examine his blood work and cough swab to try and see exactly what's going on being as he is so very well in other ways.
Anyway, more to the point, whilst talking about infection risks, I mentioned Alex and the housing situation and both the Consultant and the Physio think the boys should have seperate rooms.. and NOT because of the sleep issue (as I have been pushing, although this IS relevant), but because Alex, although he doesn't have CF, is a very chesty child, esp. in winter and ideally should not be in such close proximity to DS1. He has also been known to grow a dangerous-to-people-with-CF germ in his EARS! (pseudomonmas) has he has a glue ear problem which crops up from time to time usually when he needs new grommets. They also want me to take him for sputum tests even though HE does not have CF, just to see what he is growing so as to assess the risk to DS1 each time. How the hell am I supposed to do that? Alex will not cough up sputum on demand.. and if you go near with him a cough swab (long cotton bud type thing used to poke back of throat in absense of readily available sputum) he will surely bite my finger off.. or puke.. which won't be a lot of help...!
So anyway, they are both writing letters. Which is good although of couse the housing assoc. are NEVER going to believe I didn't instigate these letters.. sigh. It's like a bad joke all this.
And just to finish off this depressing tale, (if anyone is mad enough to read posts that are this long), this morning was Poo Day, but I was clever and shrewd and put Alex to bed in a pair of DD's tights, as advised by lovely people on this thread.. with an all-in-one over the top. With the week we've had, DH and I were more exhausted than ever (and Alex of course had had DH up in the night and me up at 6am) and we slept until 9am. I awoke with a start, noticing how quiet it was, couldn't see Alex on the monitor that sits beside my head as I sleep, but was reassured that whatever was doing, out of camera shot, that he was all 'secure' in tights.. Alas, as I sat up in bed, the smell hit, and sure enough, there he was, watching tv sat in the corner of the room (DD had put telly on for him earlier), had managed to strip himself completely naked, (darn that pincer grasp he never used to have!) and has spread poo all over his bed, most of the carpet, the radiator, the window sill, the chest of drawers, ALL his teddies and had managed to open the chest of drawers and empty 2 drawers containing all his nightwear and DS1's underwear... and all of that was covered in poo too. Oh and he's eaten a good amount.. and it must have been some time ago because what was stuck to his face and all round his mouth had solidified..
Took 2 hours to clean up. Think this was the worse ever actually. Alex still doesn't smell 'right' even though I have bathed and bathed him and scrubbed in Softwash (most he can tolerate.. not really supposed to use anything but Dermol because of his eczema but's it's fragrance free so won't do on days like this.)
When we'd finished we felt so despondant that I said 'f* it, let's go the pub for dinner" so we did. Didn't think DH would agree. He's very depressed because his mum died unexpectly 4 weeks ago yesterday and he just can't get his head around it all. Am trying to get him to agree to bereavement counselling. I don't mean to sound selfish but I need DH back.. I am supporting him in every way I can but there is noone for me to lean on at all.. and things are so pants. Even my best friend, who I can always rely on, is so distraught about DS1's lung function (she loves him like her own and knows all his CF treatment by heart and always has) that I even felt guilty for telling her! I told her DH on the phone yesterday, actually when making arrangments to drop Alex at hers so DH and I could go and watch DS1 and DD compete in a swimming gala. (DH shouldn't have gone; he was so down he didn't speak a word; he wanted to be up North with his family where the rest of them were scattering his mum's ashes but they decided on the spur of the moment so there wasn't time for us to make arrangements to go..) and when we dropped Alex off before the gala, BF's DH said 'go and counsel her will you.. she's really stressed about this lung function..!' and I actually said 'Oh ok then.. but FFS.. who's going to counsell ME!" (rather childish I know..)
I think I may just have a nervous breakdown.. will check calendar to see if I can scehdule one for some time this week.. then get commited and taken to nice, soft, fluffy, secure unit by which time I will hopefully be beyond caring about any stresses occuring outside it.
Only joking. Obviously don't want to loop the loop.. but sometimes it seems like an easy option.
Sorry for length of post.