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

I put my best foot forward this morning and went out for a run on the road. It was exillarating! and I can't wait to do it again, so weather permitting, Sunday morning will be the next trip out.

Its so much easier than getting all your stuff together and driving to the gym then getting changed and coming back again, I was all done and dusted by 10.oclock, and generally I was very pleased with my run, I did around 28 minutes, and I actually started from my home, went around the perimiter of our estate and passed my house on the way back and circled my street once again before my alarm went off.

I thought I would put a link up to something that happened in our local town centre yesterday - the title should have read 'What an idiot' - I think he was very lucky indeed, I wish I had been there to see it.

After reading an exert from the blog of Martin Lewis (the GMTV savings advice expert)... I decided to post the link here

I would just like to add to that a heart felt thank you. Cf is not often understood by those unaffected,easily, and supported with such conviction, and your help is very much appreciated Martin.

My daughter Grace aged 7 struggles greatly with CF and her daily medication is huge, one nebullised medication alone costs around £1,400 a month, and thats just one. She also has to use a wheelchair for days out as she couldn't manage to walk for a whole daytrip, but sadly doesn't qualify for a disabled badge either.

I watch your tips for saving on GMTV regularly and also whilst doing Graces physio, but I think that you have now just made two friends for life.

Regards MoO and Grace xx

First CF Rose

This is the first flower this year!! However, I wish I could say the same for my mixed lettuce leaves...... they won't grow!

Grace is going on her school trip today. Its to St Johns Museum in Warwick coinciding with their studies on the Victorians this term. She is mega excited. They haven't taken the wheelchair but have phoned ahead and there is one for her to use there if the need arises, although there probably won't be much walking once inside.

We were up early to do IV's and all her usual meds and hayfever tablets etc so that she was ready for the early arrival of the coach. She was pretty breathless by the time we had reached the school gate, but I am thinking that her blocked nose is playing a big part in that presently.

I have since been to the gym and she will be well into her outing by now.

Grace has a piano lesson at 6.00pm so I imagine she will be pretty tired later, so it will be interesting to see if she manages school tomorrow, although Wednesday is a half day so hopefully she will cope.

Thankyou to everyone for comments on my previous post, it really has boosted my confidence. I did tend to feel that the Dr's, physios etc are the experts, but as everyone pointed out, no one is more the expert than myself. I found this, as I was doing Graces first dose of IV's up at the hospital last Thursday. Grace always has atleast 2 doses in hospital before we can go home to continue the course and a nurse was doing a draw back on the flush and it wouldn't draw back, infact it was springing out of her hand! I told her that we always had to push a little flush through before the draw back, she told me that they weren't supposed to do that. She eventually had to do it because nothing was coming out until she did.

She then questioned me on knowing the difference between flush and hep and I told her that I discolour the flush with the blood from the draw back and she said it was safer to leave the hep drawn back in the syringe until you were ready to use it so that you knew the difference, to which I replied that I had tried that once and forgot and almost filled her full of air so resorted to my own method. She then thought better of it and agreed with me and felt that she would have panicky parents on her hands if the same situation arose. If I could insert a picture of myself huffing on my nails and polishing them it would be very apt right now.

I'm off outside now to enjoy whats left of the lovely sunshine before it returns to our usual summer weather and having to walk round in a plastic mac absolutely drenched whilst its stuck to me from sweating!!

Grace starts IV's tomorrow. The first dose will be administered at the hospital as normal after port access.

We are not going to take the wheelchair even though Grace is struggling to walk presently due to breathing difficulties and when the ibuprofen has worn off and the pain in her joints kicks in.

The physio from BCH's comments have stuck firmly in my mind, and I feel, if we use the wheelchair, that we are adding to her problems.

Grace did half a day at school today, when she came home she ate her lunch and sat at the computer all afternoon (I was making sure she got some rest and did nothing strenuous) by teatime she could barely walk and was extremely lethargic.

We do everything that is asked of us, never miss physio, never miss any medication and yet our child cannot walk upstairs to her bedroom without having to have a lye down before changing out of her school uniform, and yet she doesn't, according to the physio at BCH need a wheelchair and should be getting as much exercise as possible.

What should I do for the best, go with my own instincts? listen to the physio? What?...... I don't know anymore. I have searched the internet for symptoms, cf and non cf related.....but still don't know what to think next.