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.

Mark spoke to the DLA office this morning to discover why they had made the decision that they did.

The reason is that they feel Grace no longer needs the overnight care, as she is no different to a normal child in that respect. Mark then mentioned about the mal-absorption and the need to go to the toilet with absolute urgency and their reply was "take her to the toilet before she goes to bed"

So a normal child would have to get up between 2 and 5 times a night would they if their creon didn't pan out in the day in the way that they would have liked? and ofcourse any normal child would wake up screaming 'I don't want to die' on a regular basis, or ask you to sleep with them and distract them so that they are not alone with their thoughts, and a normal child would obviously have their night sleep interrupted everynight in the early hours so that they could have their IV's administered 3 weeks out of every 3 months or wake up with wild nightmares because of the extreme medication they were on??

Of course I can see the similarities now, how silly am I?

I don't care about the benefit being dropped, but I got sick of pushing for the disabled badge and gave up, but its made me think why should we settle for second best? We got turned down for mobility because Mark put that Grace could probably walk 150 yards but it would most likely have a detrimental effect and she would be off school the following day because she just couldn't do it, not even 10 yards.

I now feel like my heart is in my shoes and dragging on the floor and just can't stop crying when I think that I will have to stand before a tribunal (if we get that far) and beg them to let us have a disabled badge and prove to them that she is in need of the benefit to a stupid pen pusher who knows nothing about my beautiful girls illness and never will other than looking for 'key' words on a DLA or mobility form.................do you know what? I don't think I can even be bothered to appeal, we have a choice of it being viewed again, or asking for an independant body to review it, and they are only going to come to the same conclusion by reading the same form, so what is the point.

And as for "Why don't you take your child to the toilet before they go to bed?" I've never felt so humiliated in my life, why do I have to explain this to people who don't know, why aren't there qualified people in this position?

I'm doing this

You know how much I like baking cakes...........come on, join me, its for a great cause

Why?

Why when Grace was diagnosed at 13 months old and we were told we could apply for DLA, did they, without question give us the highest rate?

Why, now that she is almost 8, worse now than she ever was, be awarded middle rate?

Why? as much as we try, even though she spends days and excursions out in a wheelchair, can we not get mobility?

I've had enough now and I am going to the newspapers with our plight! I really am sick to death of red tape and systems put in place as to stop people from 'taking advantage' .................. I cannot believe how angry I am, and something has to be done now!! I can't understand how we need higher rate dla to get higher rate mobility, Grace can't walk for a normal 1-2 hour shopping trip and yet our mobility has been dropped to middle rate.

How do I make these fools understand for goodness sake?!