Saturday, 27 February 2010

Catch up at last

I'm afraid I haven't been in the mood for blogging or visiting boards for quite a while and have fallen by the way side in reading blogs etc. Life has been busy and so I've just been visiting Face book and Stashaholics Central and leaving it at that. I'm not sure if it's to do with the long, cold winter we're having but I'm sure we're all begining to suffer the effects of S A D, I certainly feel down and don't want to do much of any thing lately :( I'm longing for some sunshine and warmth! .. and I'm not a hot weather person usualy! lol .I had a lovely email from Julie and a poke from Barb in one of the funny emails she sends, which reminded me that although I haven't met any of my stitching friends from blog land and boards, they still think of me occasionally and wonder what I'm up to. So I thought I'd better do another post :)

As you may remember from my last post, I finally managed to get the Social Services to pay the down payment on the Motorbility car, and I took delivery of it this week. One whole year after starting to ask for their help in getting a car! I have been able to sell my VW transporter back to the dealer who I bought it off originally so I'm pleased about that. It has done me proud over the years, and I've transported alot of things in it, not just Jack. I helped my friends move house, took furniture to the tip, a treadmill up north, and a marble fireplace to name a few ROFL
The new car's reg no is NK59FJJ which translated means ... Nice Kit .... For Jack's Journeys ... very appropriate don't you think lol

I have had two very major meetings with the senior managers about the way I've been treated this last few years, and the lack of support I've had. I managed to get the support of the Fostering Network's Advice and Mediation Officer for this and she has been a real help. She is appalled at the treatment I've had considering the disabilities Jack has, and the impact it has on our life 24hrs a day. The out come ... so far.. is that they are looking in to setting up a protocol for carer's of disabled children and looking in to the cost of looking after these children, the support needed and the training required.
The 3 senior managers did a 'roadshow' around Shropshire last month, to let every one know about the new changes they're bringing in, none of which where about disabilities, so I took Jack along and 2 other sets of carers who look after disabled children, and we 'high jacked' the meeting! We told them about our grievances and problems and made them listen, it was awesome!!
Some thing must have worked because just this week I have been offered Manual Handling and Makaton training ! I have been requesting M H training for years!!! So hopefully some thing will get done and stay done

The nursing help that was put in place has been very hit and miss! The PCT team have staffing problems and don't come out to Jack at all now, and the agency who started before Christmas have been terrible. They didn't turn up on Christmas Eve, so the girls and I had to cancel our meal out! I had to run around and make a christmas dinner at short notice and we ate at home. Luckily I'd bought in a turkey breast, so I could cook it and have cold meat on the buffet, Christmas Day. So I cooked that and did all the trimmings and where I would usualy put every thing in to dishes on the table for Christmas dinner, I just dished up the food on to the plates and served it up. Even though it was a last minute dinner, every thing was lovely and the girls and I enjoyed our meal :) We had a couple of glasses of wine and had hysterics when the desert was dished up because I'd taken it out of the freezer a couple of hours before, for it to defrost, only to find that it was an icecream desert and when I cut in to it, it oozed out over the plate and all over the table in a puddle of icecream rofl It was sooo funny!! lol

Jack is entering puberty, now he's almost 13yrs old and as a result his seizures are increasing in strength and frequency, so I'm struggling with him at the moment. I had to call out the ambulance to him last month as the buccal medazalam wasn't working (he produces too much salivor for it to absorb in to his cheeks) and I needed rectal diazapam to be administered. We have since met with the consultant and she has introduced a new medication. I have to increase it every 2 weeks and each time it causes him to be very sleepy for two days and he has clusters of 5-6 seizures which require rescue medication. So it's been very fraught lately! The consultant also pointed out that Jack is in the group of people who could die in their sleep through epilepsy! It is similar to sudden death syndrome in babies, but is caused by the seizures ! A very scary thought, and it's not a nice thing to live with!
As I mentioned, Jack will be 13 yrs old in April, and I have arranged for him to have his birthday party here, and have arranged transport for all 16 of his family to come up for the afternoon. He usually goes home to his mum for his birthdays, but last time he visited, he didn't get his tea or a nappy change, and I don't feel that it's fair on Jack. Also, mum doesn't have the equipment needed for hoisting him etc and has to manually lift him out of his chair, which is dangerous now he's getting bigger. So to avoid upsetting any one, and to safe guard Jack, I will have his birthday here this year :)

My parents bungalow, which is up for sale, has now got a tenant in. They are a family who were interesting in it last summer but hadn't sold their house. They now are renting the bungalow and will be buying it May time, when their finances are sorted. My sister didn't ask my brother and I if we agreed to this, but there's nothing new there! At least the house is occupied and will be sold soon :)

Both girls are doing well and still working hard. Janine has rescued a collie from the National Rehoming Centre at Roden and so we now have 3 dogs. He is called Cal and is an absolute darling, but he doesn't like sharing his food with the other two and his chases cats!! Oscar is keeping to the front room and the bedrooms and has now decided that the front room window is his new cat flap, as the proper one opens in to the kitchen where the dogs are lol I will post a picture of Cal next time I post :)

I hope your all keeping well, happy and loved xxxxxxx