Yesterdays post was short and sweet as I didn't have a lot of time and I have other things on my mind.

We are currently trying to close down our existing business and are ready to move on and begin another one, but, and its a big but - I have always wanted to move nearer to the coast and Mark feels that we should do it now.

Faye has just finished a HNC and is going on to further education. I feel that she should go to a university and stay on campus or move with us and stay at home, but she has set her mind to a very expensive private school of teaching. I have great concerns that she will run up a huge debt and possibly not finish the course (you have to rely on scholarships after the first year and only if the school deems you good enough to receive one). Also she has to find somewhere to stay and although I will have family in the Coventry area, no one feels that they want to put her up for 3 years.

In my opinion if she goes on campus at Uni for the first year, it would put her in good stead to manage her finances better and be able to rent with students for the last two years, and I would feel much better about her doing that and at a fraction of the cost including the maintenance fee that at the private college.

Its not all about the finance, I just think that she has a wider scope at University rather than specialising in one area only.

I have taken weeks to work out in my head that that is the only thing stopping me from coming to a decision now. We will be going there with no work, but Mark will advertise as soon as we get there and hopefully start jobs more or less straight away. He is going into painting and decorating, one because he has done it on lots of occasions to help out his best friend who does that for a living and two because he is very good at it.

This may all sound like irrelevant rubbish, but when you have a very sick child life has to be relatively problem free so that you can devote all of your time, energy and worries to them without other stuff getting in the way.

With all that in mind, I still think it would be a great thing for Grace if we moved, so I must have come to the right decision????

I forgive the person that left a comment yesterday saying that my blog was irrelevant and not at all interesting, but hey you didn't have to read it, and its meant as a release for me, no one in particular, but if they like reading then what does it matter. I only hope you are never faced with the difficulties that a family looking after a sick child has to deal with every day. Hows that for love week Suzie?

Graces school has had an international week this week, and Graces class were French.

They had food tastings and dressed up and Grace played Au Clair de la lune on the piano in front of the whole school! I don't have a photo of her playing piano in school, but the one above is her practising at home.

Whilst in photo mode, does anyone want to buy my car? Its been up for sale for ages.... its got 15000, miles on the clock and I have been its only owner.... I can't even get 6000 quid for it :( .................. my poor little car.

I have tried to make a film, well I have made a film of Grace doing IV's, but I just can't manage to upload it. I was inspired by Athies 'Great Escape' which is hilarious by the way and you can see it here. Hopefully as soon as I have managed it, it will be uploaded.

Coming together

Grace has had her port re-accessed by the nurse and is back on IV's until Tuesday, she seems pretty well albeit still getting joint pain despite the steroids. This makes me wonder is it worth doing them as nothing else but anti inflammatorys seem to work.

I am still waiting for my friend to work out how to email me photographs from BGT. I took some which I will post today, but the zoom wouldn't work on my camera so they look a little like a Lowri painting.

I went to Fayes end of year performance and was very entertained, although the drama group performances always shock me with their swearing.

Today Harry 'O' (my Dad) went to surgery and had a pacemaker fitted and when I phoned at 12.00pm he was sitting up having lunch! Blimey there'll be no stopping him now, the squirrels in the garden had better run for cover.

I've been to the gym and did 26 mins on the treadmill and a further 20 on the cross trainer - Suzie try level 12 for 2 minutes, phew!!

I have requested details for a house in Devon and Mark and I (and Grace of course) are planning on travelling down on 12 July to have a look at a few on the market. I'm still very undecisive about this, but I've always wanted to move to the coast one day. I have to take into consideration that we will be going down jobless until Mark starts advertising and getting jobs (painting and decorating, we have put some money aside to cover us during the first couple of months. Mark has worked on and off with his best friend in the trade, and completely knows what he is doing, but it still really scares me.
Graces cf care is another consideration and I have emailed relevant hospitals. We have looked at schools and I would need to find a nice pharmacist and a GP that is happy to add Graces stuff to his budget.

My home here is complete and perfect, well more or less, I would probably have the front garden converted into an off road parking area. This makes it hard to give up, so I am looking for a property that needs nothing more than cosmetic surgery and I am totally happy with bathrooms and kitchens etc, those builders certainly left me with a bad taste in my mouth.
Grace says she will miss her friends but is sure that she wants to do it, Faye is off to Uni anyway so she wouldn't be around for a while and Kristi just said "great, free holidays"! Adam is of an age where he has started to be a little independant and feels obliged to turn down days out with friends because he has to spend the weekend with his Dad, so we felt that if he visited monthly he gets 3 weekends out of 4 where he can please himself so making it less pressure, and obviously school holidays, well Adam and sea are 2 words that are difficult to separate.

So why then am I turning this over and over in my head having days when I'm absolutely going and then days when I'm absolutely not? (In the voice of the Grinch) Errrrrrrrrr thats a tough one! I am going to have to ask for help on this one from my friend 'God'



Click on the little box to see George, its the only way I could do a big enough picture, and Faye is on the far right of her picture.

I had planned on going for a run this morning, but Graces line was out when she came home from school on Friday. We went up to the hospital and they made 3 attempts to access it, but couldn't. During this time Grace had a lot of entinox and needed a wheelchair to go to xray (to make sure there was nothing wrong with her port). Her Dr was on call so he said to leave it until her Cf nurse returned to work on Monday.

This morning I text her at 7.30 and so far we haven't heard anything. She may be waiting to talk to the consultant so I haven't contacted her as yet. I will give it a little while longer then give her a call to find out what the plan is.

Generally she appears a little better, but that could be just because the IV's have been stopped as thats how they make her feel.

Because Grace is so compliant they had 3 attempts with entinox to access the port, so it looks a little like a pin cushion and very bruised presently, so they might decide to leave the extra week of IV's. She hasn't complained of joint pain for the past two days so the 25mg of prednisalone daily is obviously having the desired effect.

We went out for lunch yesterday and had to sit in the garden because we didn't book and there were no tables available until 4.30 (this was at 1.00pm). Yes it was gail force winds in the Midlands yesterday, but we took our chances as it was a warm wind.

Firstly when they brought out our starters Marks garnish blew away before the waitress reached the table!! Generally lunch was very nice, but trying to eat roast beef through your hair is interesting, the worst thing was that the children take ages to eat and I decided to have a massive hayfever attack right in the middle. I was a sorry sight by the time we left and it will be a lunch we will never forget, its a good job we have sense of humour.

My Dad is currently in hospital waiting to find out if he needs to have a pacemaker fitted. He's been unwell for some time but put it down to old age and wouldn't go to the DR's (typical man thing) anyway he fell off his stepladder and had to go to casualty which turned out to be bruised ribs, but they were more than concerned with his heart and lack of blood pressure.

Anyway, the point is that a lady on another ward with cardiac problems and severe confusion, won't leave him alone, she thinks he's her husband and keeps turning his tv off and saying he shouldn't be watching it and if he's trying to sleep she keeps touching his face and adjusting his covers etc, but its really getting him down and he now seems more poorly than when he went in.

We have spoken to the sister but they said there isn't much they can do, he has been instructed to buzz the nurses if she steps foot in the room, but he is on edge all of the time and he can't sleep because she wakes him up as soon as he nods off.

He is ready to sign himself out and we have worked hard to keep him there, but surely they should be doing more to keep this lady out of his ward? especially as a cardiac patient needs to be kept calm. They can't move him as there is no other beds available, but he is very fragile and its frightening him...... poor GrandyPandy.....hopefully we get some better news later on today, but until then I have to just hover around all day waiting for update phone calls from everyone.

Graces line decided to pack up this morning, it had been giving us a bit of trouble for a few days and had to do some major fiddling to get anything through it. We knew we would have trouble as it had been put in sideways on so as not to give Grace a pressure sore.

The nurse came out and replaced it with different style a bit like a butterfly so that she could pack out each side to prevent it rubbing. So we are up and running again now.

This morning Grace seemed better than she has been, not too much complaining about joints and definitely perkier than usual. So hopefully the meropenum is making a difference.

My car is going to appear in the paper today as I am seling it, so I have to go and wash it and make it look presentable incase of any viewers.

Been to the gym this morning whilst I had the chance. Grace only does half a day on Wednesday and although she didn't go yesterday, I feel she's flagging a bit, especially as she is now on meropenum (nasty old stuff!) so I've already decided not to send her all day.

I did 28 minutes on the treadmill a further 20 minutes on the cross trainer and about half an hour on the bike (my favourite).. I must get a bike.

I have returned home to do some tidying up as someone is coming to value our house this afternoon. We are considering very strongly moving to Devon. I have always wanted to do it, but had sort of a five year plan yet. Anyhoo because Mark is changing job gradually at the moment (involves getting rid of bookies and is already doing painting and decorating and gardening and other stuff) he has decided we should just go for it now. So I want to know how much we have got to spend property wise in and around the Paignton area. As you could imagine Mark is already looking at properties near Newton Abbot racecourse!

I love my home, I have got it just how I want it, but I am happy to move so that Grace can wake up everyday near the sea and just generally experience a nice life however long it may last. I'm not being negative or pesamistic, just want her to have the best of everything...... you only get one shot at life, so do all things you think about doing, thats my philosphy, and anyway one of things that I have thought about doing is to 'do up' an older period house, so maybe thats my next project, (just that I will be living in it whilst doing it).

This hasn't been taken lightly either, I have checked out the Cf care in and around the surrounding areas, because Grace is a bit of an 'enigma' as Dr W from BCH put it, and needs an awful lot of care. Maybe the area will make a difference to her health, who knows?

Grace had clinic this morning. I thought that she was doing ok, if still breathless. Mark has said all week that she is rubbish and no better for her IV's, but as he had work commitments he couldn't come to clinic so he wouldn't be pressing the Dr's for answers (I always feel that they do things to show that they are appearing to do things for Marks benefit because he never lets up and accepts there is nothing else to try).


Today I thought I would say nothing and let them form their own opinions (the team). What a shock! Grace sats were 88 after more than 3 attempts different machines, washing sweaty hands etc. Her lung function was well down! fev 0.59 and fec 0.91 - I think 0.59 is the worst yet. Her breathing was very obvious to Dr S from across the room and how she struggled to get the better of it. Today they even took her blood pressure in clinic and they've never done that before.

So 12 days into IV's they've decided to proceed for another week and change the ceft to meropenum. Also a 3 week booster on the steroid front to try and sort out the joint pain which has become increasingly troublesome over the last 6 weeks or so. I spoke to them with regard to spiriva and Dr S looked it up on google but he said it looks as if its not liscenced for children, but would look into it more.

She is to be seen again in 4 weeks once the treatments have been completed and to see if she settles down again, and before, if we feel there is more deterioration, but generally he said she was very unwell again and was concerned.

If you had seen her at the BGT tour last night in Birmingham you would never have believed that the Dr's would say such things this morning. He did however, show extreme concern with regard to her stinky feet! I wonder if its a CF thing?

I will post picture from last night as soon as I have more time, off to do IV's now before piano lessons........................