Friday, 30 January 2009

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...............

Wednesday, 28 January 2009

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.

Thursday, 22 January 2009

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 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?

Wednesday, 21 January 2009

I'm doing this

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


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?!

Sunday, 11 January 2009

The Great Blue Badge Debate

After reading this thread I felt I would ask others their opinions.

I know that some people feel that we do not need to be using a wheelchair and building up lung function to promote better health long term, but I will write Graces story first before anyone gives an opinion to paint a better picture.

Grace has been very unwell for the last 3 years really. She has always done lots of activities and exercise, she has a trampoline in the garden and she (up until the last 6 months) did swimming every week. Along with numerous trips to ball areas and dancing classes every week and we always walk to school, never go by car (not once in 6 years of school).

Graces team were baffled by her low lung function and her low sats, she was given a bronchoscopy last year and lots of other tests, checking bloods, cortisone levels, ph probe to test for reflux - you name it she had it tested. The only thing that it showed was from a CT scan the Grace has bronchiectasis and lots of mucous at the bottom of her lungs. After a lavage Graces lung function and sats improved, but she still remains the same with extreme exhaustion and 'funny episodes' the are un-explained.

Graces team, advised that she had the wheel chair for long excursions only, but at the time it was advised that we used it to take her to school just so that she could manage a full morning without being sent home by 10am. Her school week was cut and more recently we have been advised to stop extra curricular activites just so that she can manage a whole week at school. We are now in discussion to arrange home schooling Tuesday and Thursday afternoons so that Grace can get some rest if she needs it.

Bearing all this in mind, a forum member felt that we should push her to walk the long excursions and take short breaks in between and get someone to stand with her outside the shop/theathre/cinema etc, entrance whilst I looked for a parking space.

I could have blown my top at the comment, but felt that I needed to look at it from their point of view. Yes I would love it if Grace do the long excursions by taking short breaks all day, but even if that was in place I know for a fact that she would be motionless on the sofa for two days afterwards. i know that the exercise would help her lung function, but currently her lung function is what we consider from past lung function, to be good.

The other stuff, well we do all of that anyway, but sometimes when I go shopping and my husband is at work, I have no one to leave her with whilst I park,thats just a stupid obvious answer really, but its a real one.

The person also pointed out that they had quite good health whilst they were young and good lung function, and as we all know that are connected with CF, that it affects you all differently.

I don't want to be cross with this person, but to read their reply made me feel a little stupid as if I hadn't thought of those things, even though I know they are only trying to be helpful.

So this is just a request for opinions or ideas for ways for myself and Mark to look at things differently with regard to helping Grace, so far we have more or less followed exactly to the letter what Graces team have requested, even though they always consult our opinions. I would also like to add that Graces team have been generally very concerned with Graces health and we have always managed to play it down and just get on with things and that we are not pushing to get a disabled badge, just merely pointing out how confusing the system can be.

Grace is seen regularly at BCH, and the founder of the team is actually supposed to be retired, but he still keeps an eye on what was called 'special cases' to him, Grace being one of them, not good for us I know, but it just makes me wonder if we are doing the right thing for her or not.

I didn't post any of these feelings on the forum because I didn't want to cause a massive issue or upset anyone, the person that had replied to me in particular, it just made me think, and I wanted to get it out of my system, read it back and take on board anyone elses opinions to help me draw a conclusion.

Thank you if you managed to read to the bottom of the post.

Thursday, 8 January 2009

Shelley have you seen this?

He wanted to remain anon, can't blame him, poor man..... did make me laugh though haha!


Happy 2009 everyone! I hope this is a good year.

Today I have signed up to the Mr Motivator campaign to get Britain fit! I am reasonably fit, but could probably do with a bit of a push after Christmas and this awful cold weather (well actually I quite like the cold weather it takes me right back to my childhood, I can't remember seeing icicles hanging from guttering since before 1980?)

I have not been to the gym or done any running over the Christmas break, one to rest my knee and two because I have had the most terrible tight chesty cough, but we have had a real Christmas tree for the first time ever and since we have disposed of it (to a re-cycle site) my chest seems to have recovered very quickly and whats more, I don't ever remember having a cough like that before.

I have two courses to do this month, one of them is an introduction to child care and the other is a first aid course, I also commence my NVQ 3.

Grace will be going on IV's on 15 as planned, healthwise she has been ok, her energy levels have been good but she has been at home and she is always fine when not in school, so this week will tell how she is doing. Coughwise, has been very moist and frequent, however she has started back on toby this month and she always seems to improve on that after a month of promixen.

Grace missed the first day of the new term, we put her to bed as normal, and after a fortnight of no complaints other than ankles (usual) she decided she had a strange pain in her tummy brought on after physio. This pain managed to keep her awake until 1 am. I said that I would wake her in the morning to see if she wanted to go to school but she got into our bed at 7.30 and then slept until 10.30.

We had a little chat about the pain and she did go to the toilet about 4 times during the day and it was quite bulky so maybe it was a slight blockage that we managed to move on and the pain has since gone. I asked her if she didn't want to go to school or she was worried about anything to which she replied that she did want to go desperately but was concerned that she would not be able to manage again (before Christmas Grace managed about 5 days school in 5 weeks because she was so exhausted) and that she didn't want to get to that stage again. During the explanation she was very teary and found it difficult to talk without crying.

School was good yesterday and she has gone today but I am going to speak to her teacher about maybe lessening her week again, obviously I am going to speak to her nurse first, but as far as she is concerned the original shortened week is still in place. It was Graces idea to do the full week at the start of September as she felt she could manage it. Also school swimming lessons commence this week and although Grace is an accomplished swimmer (she has her 50m badge and has done her survival) she stopped going to after school lessons for a while because it was a struggle last year, and although she is a good swimmer her stamina is not what it could be and sometimes I've had to drag her out of the pool because she just sinks without warning.

Christmas was very quiet and relaxing, the actual day itself was a bit manic and a mad rush to manage opening presents, having a shower and making it to the in-laws for lunch at 1.00pm but the rest of the holiday was just eating and sitting in front of the tv, even Newyear we stayed home and saw it in on our own (Mark, myself and Grace).

So reading back on that the positives for the year are to work hard myself towards my goal of passing exams and for Grace to manage her activities so that she can manage the year with less exhaustion.

Its strange that we have always tried to fit in lots of activities for Grace as it has always been drummed into us that exercise is the way to go to keep her lungs clear and healthy etc, but to then have to cut everything so that Grace can just complete a full week sends everything out of the window. I have always hated to be defeated and I think that has been inherited by Grace, but we both have to learn that we can't keep going and its not expected of us. Things as simple as getting to school on time -we have to learn that sometimes it just doesn't matter.....another challenge for the year maybe......