Busy Busy

It has been a long night! As soon as I laid down in bed my bubbling chest escaped the suppression I had semi managed for part of the day...and so I coughed my way through the night, the wind she blew the rain she fell and I coughed on and on! I eventually discovered the clock had moved on minute by minute now reading 6 am and I clambered out my pit and to the bathroom. Moving in the morning is a slow and painful busines and this morning self pity took a stangle hold as I managed to drag my aching body through the essentials of this early hour! Eventually one foot after the other I made it to the lounge and realised we had no Rosie to battle with this morning and the wind and rain was still relentless and so I picked up the phone to call our carer and tell her not to bother...I realy did not think it fair to drag her out in this when Rosie was in respite. Her help would have been useful especially as I felt so ill but still I felt guilty dragging her out...as the phone rang and rang I realised I had left it too late, guilt hit again as I realised I could easily have rung her last night and just didn't think of it. There was nothing I could do now though. So I made the coffee! OOOPS very little coffee left, opening the fridge I realised there was very little milk either! I dont think I have actually done a proper shop since before Christmas. Shopping was not on the agenda this morning though.
Iris arrived at 7 and I appologised for not having thought in time, however she was more than happy to be here and give the help I desperately needed even without Rosie.

David took the children to school whilst I looked at the washing/ironing/clearing and paperwork that needed tackling..........and then sat down leaving it all and drank another hot lime juice! We had the Grants officer from motability bringing a Wheelchair accessible vehicle for us to try at 9.30. I could either completely wipe myself out tidying or gain some strength whilst waiting! Thankfully my lazy nature stepped in and the sit down option won!

When the vehicle arrived it was a short wheelbase....we deffinitely need a long wheelbase, it was a low top we need semi high at least, it was a manual and that is one of the biggest reasons we are looking at a new vehicle, I can no longer manage a clutch for any length of time! Now we knew this vehicle was not going to be set up as we need it but one of the reasons for it being brought out was to see if I would need the steering lightening, we still dont know the answer to that as I could not manage the clutch at all it was very much heavier than our ambulance! So David drove it over to Rosie's school so we could try her chair in with Eve's to determine the length we needed. there was much discussion of what we could and couldn't have with a motability Vehicle, and for a while it looked as though we would not be able to have a functional vehicle to carry our family and their medical needs.
However on returning to our home and showing them how the Ambulance is set up it was agreed that a workable compromise could be done! PHEW!

So the itemisation of the inside bits was accomplished and grant agreed in principle! Then the Bombshell! The government department DWP has not agreed their funding of the motability scheme for this year and until that has been resolved there is no available funds! So we sit and wait!
does that sound familiar?

Our next appointment of the day was also at home and he arrived within half an hour of the Motability people leaving! This was a man we met at the Hospice last year....http://www.orthodocs.co.uk/...his company does amongst other things Safe Play areas and Safe Beds for disabled people. He was coming to measure up the new shed for the sensory room. We want the floor and walls padding out to make a safe area for the multi sensory room. He came, he measured, he quoted and he went away with photos of the children. The exciting bit is he thinks he can get almost 50% paid by the companies charity! WOOOHOOO!

So we are now well on the way to having a sensory room that will eventually be safely accessible to Rosie! The only worry is that the outside part of her safe play is within the area the Council want to put the unacceptable extension! We started to utilise this area again after they seemed to be taking our plans seriously in the summer. There is no way I want them to build out there! This is an area that is accessible to Rosie and we want to utilise that rather than create a difficulty from it! Hopefully having gone so far down the road of using this area to Rosie's benefit they will step back again! I can only hope!

So Lunch time! I am totally shattered and David makes me toast with Manuka honey and a cup of hot lime juice! (totaly out of coffee and milk by now!). David was keen to get on with the kitchen cupboards after dinner and ultimately I was needed to offer encouragement advice and a little help, eventually we had another 1.2metres of kitchen level! That sounds so trivial but I challenge anyone to find a kitchen with a more undulating floor level than ours! Unfortunately emptying the room and using a leveling compound was just not an option and so the kitchen units are packed up with a forest of wood blocks! thankfully none will be visible once the finishing touches are applied and I have he levelest cupboards and worktop gradually circumnavigating my kitchen! I do have a very clever husband even if his perfectionism gets a tad wearing occasionally! This last leveling feat was accomplished just in time for him to collect the children and head to Tesco! We now have coffee, milk, sugar and the rest of the essentials he could remember.
I also have an offer of an asisted trip to Tesco in the near future....or as near in the future as between us we have the time at the same time! I can't wait! Having time to chat whilst shopping and even manage a coffee together will be a great treat!
I do not know what the future holds, but I am glad I know who holds the future!