I learned this evening that Louis, someone who frequented the CF forum, died this week. He was 18................what can I say? CF is relentless.
Party on dude!
God bless your family and rest in peace xx
Saturday 28 March 2009
Thursday 26 March 2009
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?
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?
Thursday 19 March 2009
Wednesday 18 March 2009
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.
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.
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