Today I rang the DLA department to discuss the reasons for Graces allowance being dropped to middle rate.

They feel that she doesn't need anymore care at night than a normal child and no other points (even though we wrote 3 A4 size pages) had been raised.

Criteria

Grace can be toileted before we go to bed, and a drink be left at her bedside which is ample for her throughout the night. If she has any other toilet issues then incontinence provisions should be made. Grace can make her own way to the toilet and she is of sound mind. Even though we did not apply for mobility they have also decided that she does not qualify for this either because it is reviewed without our input at the same time as the DLA request, so no updated paperwork was sent in for them to peruse over. The original paperwork says that she can possibly walk 150-200 yards on a good day at a slow pace, however once she gets that far, if we had no wheelchair, we would be stuck there, I also pointed out to the lady 'Yvonne' that I spoke to, that she should imagine taking her child to Alton towers for the day, and after 10 minutes her child said 'that's it I just can't walk anymore and I'm really out of breath,so much so that it hurts'... would she then carry an 8 year old around all day? and quite a heavy weighing child (steroids)? and then that child would spend the day concentrating on breathing at a reasonable rate and staring at a parents shoulder instead of taking in scenery and enjoying the surroundings and partaking in the day out if not for a wheelchair.

Still those issues are not the criteria required. They did say, however, that the council in our area are totally responsible for the blue badge decision, providing we meet their criteria and it varies from area to area.

The council have sent out forms for us to apply and we have returned them and awaiting the outcome, but they did say that their criteria is of the same value as the DLA office............

So somewhere along the lines of all this b**lsh*t does anyone feel that we are entitled to any of the benefits or disabled badge? They have truly convinced me its not worth bothering now because they are absolutely right, we are not entitled to anything more than we are receiving and Grace can have a wheelchair to get about with absolutely no need for a disabled badge.

Incidentally my brother in law gets a disabled badge for his hip replacement, he was in extreme discomfort before he had his operation, but now he is fine and he still has a disabled badge. That's great and good luck to him, but the mentality of the decisions they make is ridiculous.

Well that's my gripe for today,I'm almost certain that both the appeal before a tribunal and the disabled badge won't make one iota of difference now, but do I need to go to the press to just shame them into re thinking their criteria?

The results from the appeal for the drop in DLa from Higher rate to Middle rate came back today........ofcourse we will be appealing again.

I've not blogged for ages, not for lack of caring, but my pc broke and I have to rely on using Marks Laptop which he never gets off from morning until night, and asks me if I want to use it at 10.00pm?....er no!

Anyway he has gone horse racing today so i've got complete use for a bit.

News - Mark has decided that being a self employed painter and decorator is not bringing in enough money so he has taken a job at a company that supplies power tools and he is now the new 'Buyer'. It means that he will be working in Nottingham, about 45 minutes away, but it keeps him off the pc at home haha, and its a regular income that you can plan around.

Serious work has been going on around the house to get me ready for my ofsted inspection so that I can start childminding from home as opposed to being an assistant to a neighbour, so we now have gates and fences and stuff and I am already sick of nearly pulling my arm off trying to open safety locked cupboards and drawers.

Grace went to BCH last Wednesday and generally the trend is moving up on sats and lung function even though her lung function was worse than last time, but her chest sounded relatively clear. Her exhaustion problem remains an issue and Dr W said that he felt because Graces lung damage was so severe it was just using all of her resources all day which made her need for a massive recovery. I was happy with that explanation but as per usual it wasn't enough for Mark, he needs answers to everything and now. Therefore Dr W decided to put her on a booster course of steroids, which in my opinion just makes her a bit fatter and more out of breath. Its supposed to be followed by an increase of 5ml to 10ml every other day. Let me tell you in caused a major divide between Mark and I, he says that Dr W is the expert, which he is, but he likes parents input and I failed to jump in with " I feel that she has been at her best lately and she even has used the trampoline a few times lately" and also the issue with being overweight on steroids cause her to have more of her episodes. So the compromise is that she has the booster course but she is staying on the 5ml,although Dr W doesn't know this yet, and neither does our team at Coventry because I have not heard from them, I left a message with the nurse to say Grace was staying on promixen for another month because I can't get any tobi anywhere at the moment, but I haven't had a reply.

I emailed a local MP last week after receiving a circular through the door entitled 'Your views matters'. I discussed the issue of not being able to get a blue badge as we do not receive higher rate mobility and the parking permit office at the council say we only qualify if we receive it, however,their webpage shows other criteria that Grace fits into which means it is wrong or contradictory.

Bob Ainsworth wrote back to me to say he was waiting to hear from CC Council.

Yesterday a lady from the permit office contacted me, she said that we needed to be receiving the mobility at higher rate, but I mentioned the different criteria on the web page and she went on to ask when we last applied for mobility, it seems it was December 2007, but it has to be (her words not mine) two years since you last applied, before they will consider reviewing it (reviewing something they told us we could not have if we didn't receive mobility) b*ll**it springs to mind!

She went on to say that we could re-apply and they would look at it again,but they work on the same basis as the mobility department, or, we could re-apply for mobility but if they turn us down they can't look at it for another two years, confused? I am, but still we will try, and if we are turned down again I will forward all of this information to Bob Ainsworth to peruse.

Graces DLA has also been lowered to middle rate, but thats not something I am going to go into today, but we have appealed.

As for exercise, I have been going out on the road more than ever, and I have been really enjoying it. I will be out on the road tomorrow morning even though I have joined another gym, I just can't get enough of the open road lately, it must be because of the fresh air and the chance to just think about yourself for a bit.

Grace has just finished a course of IV's on Thursday. Whilst on them she struggled terribly. Firstly because she was on meropenum this time, which really makes her feel rough and also because she had a much longer needle in this time round and it was packed out mainly because it was sticking quite a way out of her chest,consequently she found it painful to jump around etc.

We found that we couldn't do percussion because it was very uncomfortable to lye on her port so she did two weeks of acapella.

She seems fine and seems to have crazy bursts of energy for an hour or so then she goes right back to her extreme bouts of tiredness. We don't know what it is, but have resigned ourselves to the fact that some people with CF have this whatever, and certainly having spoken to others with CF it seems to be the case.

The nurse advised us to put her to bed earlier to try and counter balance it, the suggestion was 15 minutes earlier each night, so we are currently in the process of trialing it and I will update any results when we feel there is anything.

Presently she has just lay in bed and twiddled her thumbs and will not go to sleep, last night she was in bed for 7.45 but at 10.10 when I went upstairs, she was still wide awake. We have been advised to not let her read or watch tv or anything that will detract away from absolute rest (which we have allowed her to do in the past just to try and make sure she stays in bed) the thing with Grace is that she is always exhausted very quickly, and will lye down and have total rest,but will not go to sleep. She does sleep at night and does't have a problem sleeping, but can't be forced to sleep when we want her to sleep.

I have been stepping up the fitness again and have been going to the gym on more of a regular basis, even though now it has to fit in around work. Tomorrow we have not got to go to church as it is 'Community week' this is where our small house groups do 'Church' out in the community, be it feeding the homeless or litter picking. Our house group has other commitments this month and we feel also that Alpha has been a community issue and preparation for that alone is a community project, also some of the group are attending a CAP course which is also a consideration to the community. So what I am really trying to say is I am at a loose end tomorrow. My plan therefore is to do a very long run and see how far I can actually do, so watch this space and see if I am prepared for a marathon yet, or half marathon, or 10k or 5k............

Today I didn't go to church,(and missed greatly) it was because Grace had a 'sleepover' for her birthday. Phew! that was tiring. The girls did some great stuff, they had KFC and then had a competition where they had to make a dress from a bin bag and assorted plastic bags, and it was very difficult to choose a winner. After that they had their nails painted and stuck with all kinds of gems and transfers. They then went on to watch a dvd and talk into the small hours......... I turned the lights off at 11.00pm and at 2.00am they were still chattering!

This morning they all got up at 7.30 am and had pancakes with syrup and fruit for breakfast, followed by washing and dressing and screaming and giggling. Whilst they did their last task, painting their own ring, I got all of the clothes, suitcases, teddies etc together and parents came for coffee (that was 11.30) at around 12.45 Grace came to an abrupt halt.... and is just about awake now, she has eaten her dinner and is almost back to normal (hmmmph I'm glad she is) anyway, I have just had a glass of wine and am having a read of the 'good book' in preparation for alpha on Thursday, no doubt I will sleep well tonight haha!

I have re-joined a new gym this week, its much closer to home and costs a lot less than the other one. The main reason was for the value for money, the other gym was costing me an absolute fortune and I was constantly complaining about how dirty it was and broken lockers etc, and already I've noticed a big difference in the cleanliness. I haven't been out on the road for around 10 days but only because its very difficult to run in snow\ice without breaking ones ankles. So back to the treadmill for a bit atleast until spring.

Grace has had several invites to Jam Jam Boomerang at half term, but sadly she goes on IV's the day before they break up from school so ball areas are out of the question, I'm sure she will think of some other way to spend all my money though.....cinema springs to mind.

Off for a much needed soak in a candle lit bath now.

The last time I was deeply affected by a film, it was 'The Killing Fields' and I remember trying to explain to someone at dinner the following evening what the film was about, and it made me cry a whole day later!

I have just watched the most incredible film, and I am sure it will have the same effect. I have just cried most of the way through it..............this time the film was 'Into the Wild'

It comes very highly recommended, but I just wondered if anyone feels they can recommend a 'must watch' film or even a 'must read' book?

I am currently reading a few books, I get carried away and have to start them all at once, presently I am trying to read 4 books, 'The year of living biblically' (very funny), 'My bookie wook' the bible, (attempted many times, but now I have a plan) and then I am reading a bizarre book, which I have been for sometime, but it is hard work, but I won't be defeated, this one is called 'Human Traces' by Sebastian Faulkes, its about lunatic assylums (probably the right choice for me).

So I need suggestions to get me well read and well watched..... following in the footsteps of my very good friend, this is from my 'to do' list, so any suggestions would be much appreciated, I do however, have the complete box set of Lord of the rings including The Hobbit on my bedside table in the queue...............

This year I raised £90.00 from the sale of my little diddy Christmas cakes.....

This is where the money is going this year.......

This little boys Grand Mother is a very good friend of mine, she has been very helpful throughout Graces life in helping me raise money for the CF Trust and a massive seller of Reindeer Food. She was really excited about the arrival of her very first Grandchild Eddie Paskin.....please take a look at the link.