Friday, 28 December 2007

Lapland!



What can I say...... I am speechless, it was everything you could ever wish for and more. Grace had the most fantastic time and I will post more when I have time.

Wednesday, 12 December 2007

Palavas and pavlovas!

I don't how it should be spelt but we having one!!

After we received the oxygen, I voiced my concerns with regard to taking it on the plane. The oxygen delivery guy felt we wouldn't be allowed to take it either.

When I phoned Make-a-wish to have it confirmed that the airline had said it was ok, they told me that they had received yet another phone call to say that the airline was happy to supply oxygen because we couldn't take it on board. Why oh why does it take them so long to come to a decision?

Anyway now we have to hold our breath whilst they sort out the medical form that we need that Emmie so kindly mentioned before, and hopefully thats it. (Ducking and squinting whilst saying that) It makes me feel like the situation one would be in when the Vicar says "Speak now or forever hold your peace" at a wedding.

Tuesday, 11 December 2007

Confirmed!

We received a letter by fax today from BCH which we needed to send on to the airline as confirmation of the oxygen needs for Grace.

Later, once confirmation had been sent, we had a call from the oxygen supply people to say that it will be delivered tomorrow as 4x cylinders each around 12" tall that we would have to take ourselves and would be more than enough for both flights.

So it looks as if we are going to Lapland for definate on Monday!!!

Friday, 7 December 2007

Flight simulation

Grace went to BCH yesterday with Mark to do a flight simulation test as we have been told that she can no longer fly without oxygen (great considering that we are going to Lapland on 17th.

I didn't go because Mark had planned to go anyway to do some christmas shopping and I would see my christmas presents!

The test was supposed to last about 20 minutes but the guy doing it was happy to stop after just 8 minutes when Graces sats dropped to 77 before he even reached twenty thousand ft'. So we are now waiting for Dr R to contact us to let us know what flow, equipment, etc we need so that we can notify the airline and they agree to let us go.

So fingers crossed we all get to wear our newly bought thermals.........

Thursday, 29 November 2007

This mornings update



This morning Grace still hasn't tried the hypertonic saline as the pharmacy still haven't quite got their act together, it would seem that now that they have agreed to prescribe, they are still having a little difficulty in mixing it up, but we are hopeful that it will be this morning.

The Dr's have decided that Grace will be transferred back to her own hospital in Coventry and remain there overnight for another 24 hours observation, and that she will remain on IV's for another week.

Obviously all of the results are not back yet and will take a week or so, but the Dr's have decided if they find nothing else that Grace will definitely trial over night oxygen.

Grace is feeling much better today and more like her normal self...............

Wednesday, 28 November 2007

Quick update

First of all I would like to thank everyone for their comments, it really is reassuring. I have returned home this afternoon to keep a hospital appointment of my own and Mark is staying at the hospital this evening.

Grace went to theatre at 9.45 Monday morning and was very brave until she walked into theatre and saw everyone in masks with their gloved hands up in the air waiting for her and promptly went running for Dad! He managed to talk her into sitting on the bed and they talked her into trying some entinox which then changed after a few minutes to gas and she went to sleep very quickly. We gave her a kiss and went off for a cup of tea.

She returned at 11.15 in quite a distressed state and it took some time to calm her down. She was kept on oxygen for most of the day and her blood pressure took a while to get back up but she slept for a few hours which was good for her.

When she was fully awake she had to go to xray because they had put a PH probe in place and had to be checked to make sure it was in the right place. They did the xray at 2.00pm and no one came to look at it until I kicked up a stink at 4.00pm because until it had been checked she was nil by mouth and this meant that she had now reached 21 hours without any food or even water.

Grace having the problems that she does without food promptly went into one of her hypo thingies which was bad because it caused me to lose my temper with staff, well with gastro nurse who tried to justify it with the standard "well we have been very busy with lots of other patients to see" and then, the one that made me blow my top " Dr R asked us to fit this in, it wasn't booked". The fact that Grace couldn't lift her head off the bed because of lack of food mainly due to some one just turning up to check an xray, was not a good enough excuse as far as I was concerned.

It turned out to be a good thing also, because physios and consultants etc could see it taking place and actually believed me, and has prompted them to check her adrenal gland today and the endocrine specialists are coming to see her tomorrow.

The findings so far - she does in fact have bronchiectasis and some quite bad scarring (not sure if that's the same thing but I'll read up on it later) Dr R was very surprised how much gunk was in Graces lungs 12 days into IV's and only four weeks after the last course. They also did an endoscopy and things looked OK in that department, but the ph probe might show up something and they also took biopsy's to see if anything showed up there. All in all they were very thorough.

They have decided to start Grace on hyper tonic saline which she will be trialing this evening and an acuapella tomorrow. Also they have told us to do DNase via the eflow as opposed to the Ineb. They felt that the over night saturation's were border line so they are also going to trial overnight oxygen to see if this boosts her during the day.

On the up side Graces sats touched 95 more than once today. Mark has phoned to say that they have now taken out the PH probe which really was the only thing that I have ever seen Grace phased by - every time she tried to eat she sneezed and coughed at the same time because it irritated so much and then refused to have anything but chocolate milkshake. He also said that since the probe was removed she has gone on a mission in the hospital restaurant. I'll phone him again shortly to see how the hyper tonic saline went and to say night night.... hopefully she will be home tomorrow.

Ooh not such a quick update.........

Sunday, 25 November 2007

Off to BCH for a couple of days

Grace is going into Birmingham Children's Hospital tomorrow. We are checking in at 11.00 and she has a CT scan scheduled for 2.00.

On Tuesday she is having her bronchoscopy and upper g, i ,(gastro intestinal) endoscopy, they will also do a lavage whilst they have her under anaesthetic - that's a sort of vacuum and drain of the lungs. They also have a barium swallow pencilled in.

Grace has had to stop ranitidine for a few days because of the barium test, and her tummy is all bloated and she is getting a bit of reflux after just two days.

Presently she doesn't seem at all worried about the procedure, but she has said at least she will be asleep and can't feel any pain. Its a good way to think of things, but a pooey thing for a 6 year old to have to think about.

We saw Dr S on Thursday, generally it was to get some physio to make sure that she was absolutely clear for BCH, but her cough was dry and her sats were 93, so he was more than pleased. I have a feeling that the azithro is doing the work, maybe she had just become immune to cipro because she had been on it so long.

The Dr discussed what they might find at BCH, he feels that they will find something, and the CF nurse feels that they will find nothing, but at least it will confirm that it is indeed as they suspect that Grace, for some reason, just gets severely attacked by pseudo. Dr S feels they may find bronchiectasis - a condition that is similar to diverticular disease, where pockets form in the lungs and fill with mucous ( and not poo - thank you Mark).

Grace has also been referred for a wheel chair, it is for the purpose of putting in the boot of the car, and on days where we have quite a good walk Grace can view her surroundings comfortably without struggling for breath. This came about when she had to have an emergency port flush last week because Mark fell over whilst carrying her home from a bonfire party and she took a bit of a bashing and her port area got quite bruised, but it was fine, it did however, bring up the subject that Mark Carry's her everywhere and now that we have lost the disabled badge, we have to carry her further still. We live only 150 yards from the school gate but unfortunately its up hill and Grace struggles to manage 50 in the mornings.

A meeting has been set up in school with myself, Graces teacher and the CF Community nurse because they now feel that Grace needs a day or half a day out of school each week to recharge her batteries so that she can get through the week comfortably.

Hopefully I can report on all of this stuff in a months time and say that it has made a fantastic difference.

Now I'm off to do some Christmas shopping on eBay....................

Friday, 16 November 2007

Today Grace wanted to go to school because its 'Children in Need' day but I could see that she was putting a brave face on from last night. Her port always gives her a hard time the first 48 hours after access and even after calpol she was whincing with pain (under her breath).

Anyway after her first dose of ceft this morning she was totally done in, all white and sickly and had to lye down, so she just couldn't manage school and admitted defeat, we also had to cancel taking Nanna shopping, and will attempt it again tomorrow.

I got a little panicky as they sent the ceft in 2g bottles and we normally get 1's or 1's and halfs. So we had to add 10ml of water and the draw off 7.5 and then dilute to 20ml.... easy for Mark but i'm not good at maths and I keep worrying that its wrong especially when she felt really poorly afterwards.

She is fine now and we seemed to have played every board game that we own and eaten tonnes of satsumas and watched christmas films on sky all day. We have also made lots of lil luvables bears with her bear stuffing factory - strange that she had it for christmas last year and only made one,and we have waited until now to finish making them.

Grace seems a little better in the last few weeks, maybe its the azithro, but it was good to see Dr S smiling yesterday and saying he was pleased. She still gets bouts of exhaustion however, and she has had 6 lots of IV's in 6 months, but her sats were 94 yesterday. We didn't get the opportunity for a lung function test and it was 46% last time, and that was with improvement, but she has to go back to the hospital to do them next Thursday and spend some time with the physio to get her in ship shape for her bronchoscopy on 26 November.

I don't want to speak too soon, but maybe the downward spiral has gone into reverse (fingers crossed)

Monday, 12 November 2007

Horrors of CF

Grace has just gone to bed..... she has spent the evening down stairs with us because we have purchased Harry Potter and the Order of the Phoenix. It actually finished sometime ago, but she decided to tell us that she hates having to do any treatments physio etc, and she hates going into hospital to stop over night, infact she even hates going to clinic - the smell disgusts her and last time we were in she was sick as a result of the reaction to azithro, shortly before she was sick she had eaten a very multicoloured jelly from the hospital restaurant and now she can't get the jelly out of her mind and she just doesn't want to go back.

She has to go back on Thursday to be set up for IV's ahead of her bronchoscopy on 26 November......... what do you say to a 6 year old when they tell you something like that?

Builders and dance festivals

I have been to the gym this morning, I had a good run and did some abs work. On Friday I had a good run and I also swam and used the jacuzzi. I went later in the day on Friday and afterwards had lunch, which was a very nice mushroom soup and a sandwich, but I couldn't finish it all, (I couldn't have had mushroom lol!)

Grace has been in a dance festival all weekend, she got a silver medal for her 'Rumbly in my tumbly' dance trio, only two points off gold! She found it tough going this morning though getting ready for school, but I think showing the medal in assembly kept her going.

The builders haven't been since last Wednesday, we have phoned them around 19-20 times over the weekend and they haven't replied, we had a text message to say they would be here Friday at 1.00pm but they didn't turn up. We have decided to just send them a message at the end of today if they haven't contacted us to say that we are going to get someone else to finish the work and pay them whats outstanding so the builders won't be receiving anymore money.

We have already had a quote from a decorator to finish the kitchen off properly, the painting is atrocious and some has peeled off in areas where they painted on damp plaster. Also on Wednesday they put spray foam into the whole they made on the wall of the stairs, my words before they left was "Will it spill out?" they told me that I was quite safe and it wouldn't..... I now have a very stiff stair carpet which will probably need replacing and we still have to have the repair done to the wall, which I didn't mind about because these things don't always go according to plan and little hiccups happen, but they just need repairing at no extra cost to me.

All of this probably means that I have to find someone else now to do my porch and my drive way. I wanted all done before December even began, but it looks as though it won't get done until the New year now. We have had a sh*t year generally, Graces health hasn't been great and we have had to contend with all of this grief and the thing that gets me the most is that they just don't seem to give a damn!

We had friends round for dinner on Saturday evening ( a belated birthday dinner because the builders hadn't finished)and they still haven't so we have given up waiting, and they commented on the fact that I had lost so much weight, so for all of those people out there that can't seem to find a diet that gets weight off and keeps it off...... try getting builders in, it's a miracle diet.

Saturday, 3 November 2007

Hope

Not much to report, have been to the gym twice this week and was very pleased with my work outs.

Grace has seemed to cope ok with the compromise on Azithro (every other day) she has complained of tummy pain at around 10.30 - 11.00 each day she has taken azithro, and we have tended to give it to her very early at about 6.30ish before physio to give her atleast an hour before she eats and then she will take her ranitidine after breakfast.

Coughing is not high on the agenda this week, things do seem to be drying up a little, although she still has a very runny nose, but the tiredness is kicking in again and the breathlesness. We did flu jabs on Tuesday so Grace is glad she got that out of the way. We had them done at the same time, well I went first and she followed my reaction with not even a flinch!

I have titled the post 'Hope' because this time last year a friend of my mine was desperately hanging on to life whilst awaiting a double lung transplant, she got that call early in the Newyear, and today she will be getting married. This gives me much hope for the future but we also need awareness and donors.

Become a donor today its painless........

http://www.uktransplant.org.uk

Monday, 29 October 2007

Lapland

We are going to Lapland on 18 December!! I am terrified. I've heard from everyone that I have spoken to that its rubbish and a big let down and you have to wear thermal underwear and snow gear all the time because it is so cold, which isn't an issue for me, but we are taking Grace whom has crap lungs already. What are we doing?

We could be back on 23 December with a little girl that needs admitting to hospital because she is poorly and extremely disappointed........ On the other hand though it is her wish and the Make a wish foundation are doing all of it and we are extremely grateful and it will probably be great.

After I have got that off my chest its very plain to see how a simple trip with a child with CF can scare the living daylights out of you. I am sure we will have a fantastic time and I am now leaving space at the bottom for lots of comments of reassurance. Isn't it amazing that when ever you speak to someone they have been there and done it and it was rubbish? Not one person has said it will be lovely and you will have a great time. I've got a furrowed brow now.............

Wednesday, 24 October 2007

Azithro update

The nurse came out to collect a sputum sample on Monday morning and generally wasn't very happy with Grace, she requested that we bring her along to clinic on Tuesday at the end of the session if she hadn't shown any improvement.

Tuesday morning she still wasn't great but I hadn't needed to give her calpol. Whilst at clinic she marched up and down the waiting room full of energy and chatter. Dr S thought her chest still sounded rubbish but her lung function was up marginally. I told him that I had stopped the azithro and he agreed with me and then, as the lung function had been so good decided to try alternating days but give her a break until Friday before restarting to see if a pattern formed (that obviously means only vomiting every other day) so she will have to suffer a little more for this week........

As she felt better we decided to make a detour to Tescos instead of taking her home and then that would mean me coming back out to go to Tescos. True to form as soon as we had half filled the shopping basket she couldn't walk anymore and developed a high temperature, typical, when the Dr's saw her she was ok! Anyway Faye had to carry her and I struggled with far more than I anticipated in my shopping basket.

We received a telephone call this morning from BCH, Grace will begin IV's on 15 November before being admitted on 26 for her Bronchoscopy and endoscopy. She will remain there until 28 and then transfer back to Coventry for the last day before IV's finish on 29. She will also have a CT scan whilst in Birmingham.

Grace has also had her wish to go to Lapland granted by the Make-a-wish foundation so there is something to look forward to, but to be honest I wish she had just waited until next year and done the pop festival that she wanted to do originally, hopefully she is really excited about it, but whilst builders are still here and with all the hospital stuff going on, I can't really get my mind on the right wave length.

Monday, 22 October 2007

This morning......

Grace continued to lye in bed and be generally very lethargic last night. Eventually she could barely stand up. At about 8.00pm she was very sick and then slept until this morning, although she woke up to take calpol and again when I washed her down with a flannel as after two hours the calpol wasn't doing anything and her temp was still 38.5. Temp is 37.9 this morning and she has taken more calpol, but although she is hungry she can't eat anything and very dizzy and light headed (probably due to lack of food)and still pancaked to the sofa.

She could have a 24 hour bug, or it could be an infection, but for some reason I feel that its the azithromycin. I could be wrong and hopefully it will blow over but something just seems really strange about the whole situation.

Sunday, 21 October 2007

Grace.......

is currently lying upstairs in bed totally pooped after a bit of a session on the trampoline. She did manage to do a great sputum sample after it though.

She has had tummy pain on and off all day. I have given her warm boiled water and lactulose and a bit of a massage but so far, nothing.

It looks as though we are going to have to do the gastrographin tomorrow. Its starting to be a regular thing now. I can feel firmness in her tummy, but its just not shifting, hopefully if she has a clear out she will get some peace for a few months. Poor little thing just never seems to get a break lately.

When we went to clinic on Tuesday (the one that I almost forgot to attend) the nurse suggested that she maybe start school later or have one afternoon or perhaps even a day off each week to recharge her batteries...... she's not been in since Friday and she has already gone to bed at 5.30 today. I am off to go and sit with her now and keep her company................. I wonder who will fall asleep first?

Thursday, 18 October 2007

Where does the time go?

Tuesday I went to the gym, I ran for about 15 minutes before the community nurse rang to see if I had remembered our appointment. I was a bit confused and said I could only think of the clinic appointment, but that wasn't until 16 October. To which she started to laugh and asked me what day I thought it was.

So then I had to call Mark to get Grace out of school and meet me at the hospital. Clinic appointment didn't go well, after two weeks of IV's Grace is full of the cold and her nose has been streaming (strangely though, it always does after IV's) her chest very crackly and the conclusion from the Dr was disapointing. We are still waiting for appointments at BCH with regard to tests that need to be done.

We left clinic and due to me not doing cool down stretches and just running to the changing rooms, I was so stiff I could hardly get out of my chair. So yesterday morning I went back to the gym, did a 30 minute run, spent some time on the cross trainer and did some abs work.

I arrived home to find the floor tiles finished off but not grouted, the wall grouted and the electrics to that side of the room back on, but no builders. I phoned to find out if it was safe to walk on that side of the room and the builder said to leave it about an hour and it should be fine and that he would see me in the morning.

Took Grace to school this morning and the plan was to go out for the whole day as Mark was off. As usual we had to hang around for the builders because we didn't want to go out and leave the door unlocked. By 10.30 we tried phoning them but there was no answer so we just locked them out and left a message to ring us if they turned up. They eventually phoned at 5.00 with some excuse about an emergency boiler problem elsewhere and forgetting mobile phones, to which I replied if they didn't turn up tomorrow I was putting the cement mixer in the skip.

Tomorrow I am going to the gym again, but to be honest its just because I don't want to be in when the builders are there and considering the stress its causing me I've lost lots of weight..... well atleast something good has come out of it.

Monday, 15 October 2007

Get out of my kitchen!!!!!!

Ok now I have just about had enough. I have the same amount of cupboards as last week, I still have boxes of food on and around my dining table. I still don't have the plastering finished but hey, what the hell, they decided to start tiling the floor today anyway.

I have been out all morning sorting out Graces prescriptions, doing the shopping and visiting my sister-in-law to drop off my nephews birthday present, I have just returned to find half of the floor tiled, the fridge blocking the doorway somewhat and no builders, yes it would seem that they have cleared off again after doing only two and a half days work last week (apart from when I called them out on Saturday to tell them there was a big leak coming from behind the dishwasher) wasn't a nice experience for them facing an irrate 'me' and especially as the rugby was just about to start.

I feel like telling them to just leave it presently, and we'll finish it ourselves, it would probably be a damn sight quicker, but Mark keeps reminding me to bite my tongue.... I've nearly bitten all the way through now. I am so sick of them, I want them to finish and just go away. I want them to stop breaking all my cups, move all their rubbish out of my garden, stop using my toilet and just get lost!!!!

I know its very immature of me, but with the way Grace has been and not being able to live properly, has made my stress levels very high. They have phoned and asked me what colour grout I want for the wall tiles today (well so the voicemail said on my phone) and I didn't even reply, they don't listen to me anyway so I'll let them decide, may aswell be purple for all I care presently. They keep asking me what colour I want the ceiling painting even though I have said a hundred times, I think, that I want it white. They say that its boring..... they can have an African violet ceiling in their own house, but I want white. I seem to recall paying for whatever I wanted anyway.

Moan over and now I feel......... just as irrate.

Off to look at the horses now and see if I can cheer myself up with a little flutter.

Friday, 12 October 2007

Hmmmmm


I bought the leather Chesterfield today....................

Thursday, 11 October 2007

Isn't it strange........

How you can live all of your life in the same city and recognise a building thats always been there, but never visited it?

Today because it was Marks day off and the builders are virtually up our noses, we decided to spend the day out, just anywhere where they were not. We had a coffee at Starbucks and did a bit of food shopping for tea (shopping daily at the moment as we still can't put food supplies in the cupboards yet)and then struggled to think what to do next. A friend had asked me to meet her last week for a coffee at a local Antiques place, but I reminded her that Grace was going to be in and out of hospital that week and it would be difficult. So when faced with the dilema of where to go next the antiques place sprang to mind.

Well what a shock! It has been there for as long as I can remember and its a 20 minute walk from my house and I have never ever been. Firstly there was a small shop with some quite nice homewares in and I saw a very nice lamp for my hallway and Mark also found some very nice chairs for his new 'play room' (thats in quotes because thats what he calls it) and then we had a coffee and a cake in the the lovely restaurant which did paninis and home made soup and all of the cakes were homemade. I had coffee and walnut gateaux and Mark had carrot cake.

From there we decided to look around at the vast amount of garden furniture and gazebos and water features etc. Mark asked if I would like to have a look at the antiques and reproduction area and me being the nosey person that I am, had to have a look. Marks first impression was that we would never find anything to go in our new, very modern kitchen area, but I always like to mix old and new............ I eventually had to try and stop him from buying a green leather chesterfield sofa because I just didn't think it would fit.

I have decided from now on, that I am going to visit a lot more places of interest in and around our city that I've always known have been there but never got round to it....... sounds a bit like one of your posts Suzie. Starting this week with the Motor Museum. Grace was supposed to be going there last Wednesday on a school trip but a hospital trip stopped her from going.

Wednesday, 10 October 2007

Is it Wednesday already?

I can't believe its Wednesday already. The week has flown by so quickly. I suppose I have had so much to do and the builders being here all day means that I have extra to do when they have gone.

With regards to builders, progress since the last report - I have handles on the cupboards now. They asked me to purchase paint today but I refused on the principle that it was pointless painting when they hadn't finished the plastering yet. So today they are doing the plastering, honestly if women were builders there would be so much more organisation, possibly a lot more electrical related deaths, but definitely more organisation. I shouldn't say that really as my daughter, who is already an engineer has now moved into electrical training, but still I would think twice about letting her straighten my hair (not really Krinks).

Grace finishes her steroid booster today and her IV's on Friday, she seems to have a little more stamina than normal, but we'll see once everything has gone from her system.

Its very hard when people ask me if she is better now. I really don't know how to reply. I just keep saying its hard to tell until the treatments have finished and she is back to her normal routine, its easier, theres never really a straight forward answer thats, well, short.

When I told my Mum she had to go into hospital last week she asked "why has she been ill then?" (insert goggled eyed face here).

Generally though, she is back in school and has coped pretty well. She doesn't look good though, very very pale, infact the worst I have seen her palour ever. She is still having 10ml salt solution twice a day and she has told me that she feels much worse if she doesn't have it.

On Sunday we have to measure her saturations during the night, and the nurse will collect the recording on Monday morning. This is part of the tests that were a result of the meeting in BCH so atleast we can say that things are moving along even if we don't get to the bottom of it.

I have been to the gym this morning and ran myself into oblivion (either that or murder a builder).

The postal strike has thrown things upside down for me in a major way and I haven't sent my nieces birthday card off on time..... so this is a grovelling HAPPY BIRTHDAY SHELLEY! from Aunty MoO xxxx

Monday, 8 October 2007

Night night Sweetpea xxxx

We liked Sweetpea very much, Grace commented on her name because it is the same as mine........ she will be sadly missed. Grace chose the song, its her favourite.



Condolences to her family and friends and much love from another Gilly xxxx

Friday, 5 October 2007

Quick update

This has to be reasonably quick because I am exhausted and going to bed. I have electricity in the kitchen, so I have lights and I can see in there at night, on top of that I now have a dishwasher, tumble dryer, washing machine (such bliss) and a double oven and a hob, and, they are all working.

As I have had cupboard doors fitted today I have taken the opportunity to empty my dining table of my kitchen cupboard interiors(and dining floor and any other area in the dining room).

Tomorrow I can start cleaning everywhere, although I still have to have wall tiling and floor tiling done, a little bit more plastering and a few cupboards need finishing off, but I can feel things getting back to normal.

Whilst this has been going on, Grace has spent a week in hospital, it was meant to be a few days, but she got pretty poorly and they kept her in. Then they let her go home and then panicked and thought she would have to be re-admitted again, but I filled her full of salt and packets of crisps and she made a slow recovery. She is much better today, but exhaustion sets in very quickly.

As we were able to get out of the back door this evening, Grace has spent a little time on the trampoline. This was Kristi's idea, and it was shortly after eating her tea (which I cooked myself in the oven for the very first time) and had a massive coughing fit. I shouted at them both and told them they would have to clean up vomit themselves from between the meshy bits if they didn't stop before she was sick. This totally wore her out and she struggled to do physio and fell asleep in the middle.

I have cleaned and cleaned myself into oblivion this evening and also entertained Grace and done IV's. Mark has gone out with a friend for a curry as it was his birthday last weekend and we spent it in hospital.

After a gruelling week, Grace has to have another admission soon for a bronc a CT scan a barium swallow thingy, a upper GI endoscopy, a probe thingy and i'm sure there is something else to add to that?? she will glow in the dark!

I'm going to make myself a cup of tea, go to bed and read a book for a while, well atleast until the smell of dettox has faded from my memory..........

Tuesday, 25 September 2007

How bad can it get?

No kitchen presently, and I mean no kitchen, no appliances no sink no lights, nothing.

Today I have done the washing up and preparation of meds in the bathroom. I have got the kettle on my bedside table, but I can't get into the kitchen to get to the fridge which is in the middle of the floor with an extension cable trailing into the living room, to get milk etc whilst the builders are in there, and incidentally at 7.15 they're still in there.

Grace has now been told that she has to go back on IV's the day after tomorrow and also she has to be kept in from Thursday until Monday to be observed whilst trying azithro again and a few other tests discussed at BCH last week.

My main concern is that twice upon returning home today the builders had the fridge unplugged, I have to tell them that it is imperative that it stays plugged in containing dnase and tobi, which they do know but still keep doing it!!!! (Sorry Rich for bandying about exclamations, but much needed today), so therefore I am a little worried about being at the hospital whilst they run riot in my home, I already have to replace all of my rugs because they are totally ruined. On top of all this its Marks birthday on Saturday, I can't make him a cake because I don't have a cooker, so I have to rush round like a loony tomorrow to finish off his birthday shopping and also go to Marks Mums to do a wash load including pyjamas to wear at the hospital.

Well I did need to lose a bit of weight.................

Monday, 24 September 2007

I'm back

How terrible is it that you can't be without your computer these days? I felt like I had had a limb cut off. £190 and a new power pack later, I am back.

I have tried to get to the gym at least twice a week, but it has proved very difficult with builders being here, they seem to rope you into something most days, I've just been into to the kitchen to get some cereal and ended up holding a tape measure for about 10 minutes.

On the Grace front, after we had the meeting with Dr S he had decided that an extensive letter was to be sent to BCH ahead of our appointment on Weds 19 Sept. We had prepared ourselves for lots of discussion and thoughts on what was said in the letter.

We couldn't have been more wrong, firstly we met a Dr who said he was essentially Dr W's successor (his words). I had never heard him mentioned before and we thought as the letter had been written to Dr C that she would be there to advise us on that day.

Unfortunately I can only gather that the Dr attending had only had a few minutes to briefly peruse over the letter before we went in to see him.

He asked a few questions with regard to what Graces meds were and why she was on them. We mentioned her symptoms of lethargy and breathlessness. He inquired as to her night time sats and her blood sugars. We told him that the sats weren't an issue at night because her problems with tiredness were afternoon and evening related, but he wanted to test them during the night just the same.

With regard to blood sugars, we told him that the results to that test were normal. He then discussed aspergillus and I told him that the results for that were normal but the results for allergy were high even though Grace showed no symptoms. He has therefore decided to test for aspergillus again and also thyroid as he felt it might not be a cf related problem.

He then asked when she had her last annual bloods done, I asked what he meant and he said in an agitated voice " you know, annual, annually" (well actually I know what annual means, I wanted to know what he meant as she never actually has annual bloods taken or an annual appointment and generally because she had been so unwell, they had taken bloods and tested for everything they could think of at Coventry including Cepacia and TB just to rule those out too, as it said in the letter).

He then moved on to ranitadine, why was she on this? because of re-occurring tummy pain, as advised by the dietitian. Did she have reflux? She has had some reflux but nothing major, normally before she becomes unwell and is in need of IV's, and nothing since the ranitidine. He then read through his notes and said I will send her to xray and we will take all of her bloods and we will arrange for a reflux text because the ranitidine could just be suppressing the acid and going into her chest and causing constant reoccurring infection therefore causing the breathing difficulty.

Us - " What even though Dr S from Coventry says that her lung disease is progressing and a high rate even though it has been aggressively treated and still they are at a loss as to what to do?" Therefore don't you think that they would have done the reflux tests if they felt that was the issue?

His reply was with regard to the suppressing of acid explained above and that he felt that Grace had good weight gain (she always has and always been on permanent steroids) so then you would normally look to the parents not doing the treatments as they should........... well that remark speaks for itself....

The CF nurse, who is lovely and very helpful and we have known for nearly 6 years now, jumped straight in with the reply "this is Graces parents we are talking about and Grace would never be allowed to get away with missing treatments". This is true, we have never missed a single treatment to this day.

From there we went to xray, I told Mark that we should just do the blood tests and xray and then go, but we also had to go back to a lung function test, where the CF nurse spoke to us out of concern that we were not happy. We had to go back for the concluding meeting with the Dr so that he could look at the xray. He felt that it was no different from the one at the last meeting, which was almost a year ago as other meetings had been postponed due to Graces illness at that time.

For some reason though, he suddenly then decided to say that he would bring everything in the letter up with the Dr's at a meeting on Tuesday and that he was very concerned about Grace and that they would leave no avenue without investigation. Well now I am baffled, why if the xrays look no different to last year and no results have yet come back from the bloods which were only taken 15 mins before, did he suddenly sit up and show concern?

I am not looking for immediate answers, but the opportunity to discuss our thoughts and feelings and get some of feed back from someone who had actually known what was in the letter would have been helpful. I felt like an idiot, an idiot that had travelled all the way from Coventry and carrying a scrutinised 6 page letter so that I could ask every question I wanted to and nothing in the letter got mentioned, not one single thing.

Wednesday, 12 September 2007

God bless you Robyn

I didn't know you but saw your strong and determined character on tv..................



Now she's walking through the clouds
With a circus mind
That's running wild
Butterflies and zebras
And moonbeams and fairytales
All she ever thinks about is riding with the wind

When I'm sad she comes to me
With a thousand smiles
She gives to me, free
'It's alright, it's alright' she says
Take anything you want from me
Anything

Now she's walking through the clouds
With a circus mind
That's running wild
Butterflies and zebras
And moonbeams and fairytales
All she ever thinks about is riding with the wind

When I'm sad she comes to me
With a thousand smiles
She gives to me free
'It's alright, it's alright' she says
Take anything you want from me
Anything

Fly Little Wing...Yeah, Yeah
Fly Little Wing...

Friday, 7 September 2007

Update on the week

Grace went to school yesterday, she managed to complete the day and only asked the teacher to phone me at 3.15. The teacher told her that she only needed to wait another 15 minutes until I got there, but she said her tummy pains were so severe that she just couldn't stand anymore.

Faye collected her from school as she was nearer to home than I was, and when I got home she was fine, just desperate for something to eat. I explained to the teacher this morning that it may be that they should try giving her a piece of fruit first to stem the hunger as she has been used to being able to eat when she wants during the summer and now she is back in school routine and that she will adjust.

This morning there is no tummy pain and she seems more refreshed and able to cope with the day, so hopefully it won't be long before she gets back into the routine.
She was definitely quite perky last night, and wanted to play in the garden for the first time in a while, trouble is the garden is not a very friendly place presently.

We have been informed that we should have a roof by Wednesday and that next week is the week when the wall is going to be knocked through (probably the messiest bit)so I will be having lots of fun trying to keep dust at bay.

Meanwhile here is an update of the progress on
the kitchen as modelled by Grace. Also an opportunity to view the builders on their lunch break at 9.30am yesterday morning?! Billy, Sammy and Mick affectionately known to us as Harry, Ron and Reg. Billy is the one with cake around his mouth.

Wednesday, 5 September 2007

Oh my little girl

Grace has been back to school for two days. This evening she could barely eat her tea. She was leaning her elbows holding up her head trying really hard to stay awake to eat.

I put her to bed to watch a film at 5.45 and said I would do her physio later when she had perked up a bit. She didn't really perk up and physio was a bit half hearted, but atleast we completed it and meds.

Mark put her back to bed and she cried so much that we have brought her down stairs and put her on the sofa with a pillow and a blanket. She said she thinks that she doesn't feel very well but isn't sure, and she has had some tummy ache but has fallen asleep presently.

She has complained of tingling in her legs and a little in her arms for the last few days. She has complained of it a few times before, but never for this length of time.

This is just such a 'down'after the meeting last week. Presently things just seem to look more depressing by the minute. How much more does she have to endure?

Two days into school and I think I may have to keep her home tomorrow already. I hope not, I hope she feels better in the morning even though we may sleep on the sofa all night as I daren't move her presently.

Poor poor little mite she seemed really depressed by the whole thing................

Friday, 31 August 2007

Results from hospital meeting

Dropped Grace off at Nannas house this morning at 9.30 and then made our way to the hospital for the meeting with Dr S and also Graces Community Nurse attending.

Generally things didn't sound good, but nothing more than we had expected to hear. The Dr had drawn up a list of Graces visits to clinic since diagnosis and compared this history up to date.

It would seem that since summer 2005 Grace has gradually worsened and definitely in the last 17 months things had taken quite a bad turn. He has eliminated most things such as aspergillus and cepacia, even TB! but decided that it is more than likely a very aggressive strain of pseudomonas aureginosa, which along with Graces make up, was something that she couldn't fight too well. He had made a list of her antibodies results since diagnosis and they read at 6 in March 2002 and currently at 29, going from 17 at the last visit to clinic and after having aggressive treatment,had gotten worse.

We thought that maybe he might suggest a bronchoscopy, but has opted for a CT scan first. Also my thoughts were that the down fall had coincided with the termination of azithromycin when she developed an allergy to it. It seemed to perk her up again with good results when she was on it previous to that time.

With that in mind they are going to try to re-introduce azithro and also start her on hypertonic saline whilst also giving the tobi nebs a few more months to get things moving.

Grace also has an appointment at BCH mid September, so Dr S is going to write to them ahead of our visit for their input as he feels that he should give all these things time to see if the damage is irreversible or irreparable, either way he said that he is very worried and said that he doesn't want to lie and say not to go away and not worry because they do have 'concerns'.

He mentioned how much faster her breathing had become of late and her lung function was getting lower and lower with each visit and he felt that it wasn't due to lack of technique. I mentioned at that time that sometimes we have to tell Grace to sit down and calm down as her heart is racing whilst she is trying to regain her breath, sometimes she just won't give in. This brought up the subject of overnight oxygen, to which he was happy not to give it to her just yet as her lethargic time was in the afternoons as opposed to the mornings, and he was happy for her to keep running around like a loony whilst she felt she was able. So generally, it was no more than we new already ourselves, and we are all hoping that it is just a sticky patch that will be turned around.

We truly are hoping that it will be turned around, I don't know what to think next if she just continues to plummet at such a rate. They asked us if we wanted to ask any more questions and to write them down if we thought of anything else, but what else is there to ask?

We wrote to the make a wish foundation to try and enlist their help for Grace to go to a music festival. She would have loved to go to Reading/Leeds, all of her favourites together. She loves the Klaxons, she knows all of the words to all of their songs and it would have been the only opportunity for her to see Fall out Boy in this country this year, but whilst they have accepted the request, the procedure takes quite a while to get moving and sadly it has gone past.

I kept reasoning with myself that we were awful frauds for wanting to use the foundation, but it was mainly because camping or queueing and the sanitary state of things and how to do meds etc would make it impossible for us to do it otherwise, and just wanted to enlist their help so that she could go but still have a bit of luxury.

It will never enter my head in future, that little girlie works so hard to stay well and keep up with everyone else, and also she said if the Foundation contact us now she doesn't want to do anything else....... think I might have let her down on that one a bit :(

Thursday, 30 August 2007

Naughty Pusscat!!





Look what I discovered when I got up this morning! Tut tut!

Wednesday, 29 August 2007

Muchly updating


We have been away for another holiday. This time we decided to have a week in Devon. We have been so lucky with our chosen weeks this year (weather wise I mean)on both occasions we have had glorious weather.

Day one of our new kitchen looked not too bad.

The day before we left to go to Devon proved a little difficult to get up and down the garden to use the washing line, but I was glad to get away.

Upon returning from our holiday you can just see the progress??



Currently it is being filled with concrete, so we will have to walk around the block to get into the garden for a couple of days (can just see myself trekking around the neighbourhood with a basket full of smalls.

I haven't been to the gym or done any training since I had my fall. Firstly, the fall scared me slightly and my foot has swollen up again a few times,and secondly, Faye is in Turkey and whilst Mark is at work we haven't had anyone to take care of Grace. Except for yesterday afternoon whilst I left her with my Mum so that I could go to a funeral service, but even in that short time I think my Mum needed a lie down afterwards.

Hopefully I will be back to normal and back to my gym routine next week, and the couple of weeks break has definitely given my foot a much needed rest.

Grace is currently looking well, but lung function was rubbish at clinic yesterday, although her sats were up to 92% which was pleasing. She is currently less breathless but is producing much sputum. This could be due to lack of Dnase for a week, which she had to go without due to leaving my husband in charge of packing meds and a road I definitely don't want to go down.

Grace did lots of playing in the sea and racing (well struggling) up the steps to go down slides at the water park, but she never gave in a had a great time, in fact it took me a couple of days to recover after racing up and down with her!

We have a meeting with Dr S on Friday and he has requested that Grace is not with us so that we can discuss what they feel the next move might be due to the fact that after all of the intense treatment Grace has had and she still remains very symptomatic. She is also due in Birmingham in 3 weeks so that will probably prompt a letter to the team there.




Not quite the layout I had planned for, but it will have to do nevertheless. I am not too technical it would seem.

For Emily - I actually came into the world with a bang on Bonfire night lol! but I am not complaining as it means I still have a few weeks yet until I reach the ripe old age of 45. Thank you for remembering it, sort of, anyway, and Many Happy Returns to your sister xx

Friday, 17 August 2007

Slowly but surely

Everyone I speak to has said that. My foot will mend slowly but surely, the building work will come together slowly but surely. I want it to come together fast but definitely!

I have been going to the gym every other day, and have gradually built back up to 22 minutes running. I am still using the rowing machine and I have a challenge now. I have been trying to get under 4.5 minutes rowing a 1000 metres but I get very tired near the end and manage to put on a spurt to get there, I just need to be consistent. I have continued to do arms and abs and I seem to have lost a bit of weight. Maybe its because I haven't been able to work on muscley legs quite so much. Anyway I'm not complaining.

I tried a bit of a road run this morning, it was ok and I managed about 18 minutes which is much better than I thought, although my foot just 'gave' a bit at one stage and couldn't hold me and I ended up running at full speed into the floor, it was either that or take out an old lady walking towards me. So now I have a big hole in my knee, very actractive.

Building work is lovely, I have boulders, a trench (or moat) and we have had 3 skips already. I can't remember the builders names so we have called them Reg, Harry,Ron and Hagrid joined us today and he has no sugar in his tea.

Grace is doing ok, the eflow and tobi seemed to have dried her up considerably which is good.

We are going away this weekend for a few days and she is really looking forward to it.

Sunday, 12 August 2007

Has it been that long?

Gosh! What a long time since I last posted. Not for any other reason except I've been busying about on holiday and out in the garden in the sunshine.

I now have cast removed from my foot, but its still a bit dodgey. It swells by the end of the day, but I have been to the gym twice this week and done around 10 minutes on the treadmill and then used the rowing machine to make up the cardio and done some floor work and a lot of swimming.

I did get advised by the Dr at the fracture clinic first ofcourse, and its coming along slowly.

Grace is still on cipro and due back in clinic on 28th of August. She is still getting pretty breathless and has gone back on tobi yesterday. She had a great time away and we are off again on Sunday for five days to Devon.

Tomorrow the builders are arriving to start the kitchen. Its going to take 10 weeks and we will be away for the 2nd week. The builder said we should have floors by the time we return. That sounds promising. So forgive me if I'm not around for another post for a while and hope you are all enjoying the long awaited summer.

Tuesday, 24 July 2007

What a day!

I went to the gym this morning, ny foot has been okish and the swelling had gone down after resting it for a few days.

I decided to do a run and managed about 20 minutes before the pain started again. I got pestered by 'M' to get it looked at before it kept me out of the gym indefinitely. Grace had a clinic appointment today so I decided to go to Casualty aftewards.

We went out for lunch with Marks parents as its our wedding anniversary on Saturday but we will be going away and they won't see us. During lunch I could feel my foot getting bigger and bigger until I couldn't put my shoe on and went back to limping on my heel. So Mark said get that foot sorted out before we go on holiday because you won't be able to walk!

Grace sats were up to 93% and her lung function had gone from 35% to 54% so there was a definite improvement, but not quite enough for the Dr's to be happy. She has to stay on cipro now for the next 5 weeks, when they will see her in clinic again. During this time we need to make an appointment to see Dr S to arrange a bronchoscopy. So a good and bad clinic really.

After clinic we went straight to A & E, I went to the triage room and the nurse said she would arrange for an xray. Two hours later I was called through to a cubicle and sat there for another 40 minutes or so and then a Dr came to look at me and said, get this, " I think you have a marsh fracture, can you go to xray" so I walked all the way to xray and back, even though I have been doing it for 2 weeks, but I'm not an expert. Anyway the upshot of it is that I now am on crutches and have a plaster cast up to my knee and an injury that David Beckham would be proud of.

Mark is not happy because we are going on holiday on Saturday and I have to go on crutches and it could have almost been resolved by now had I gone earlier, but I would never have imagined that you could walk with a fracture!

I have to go to fracture clinic on Thursday morning to have another cast as this one is temporary and then to determine how long I will be off my feet..... but how long til I can run again?

I arrived home at 9.pm and I have made myself a cup of tea, but once I got to the end of the kitchen work top, I had to leave it there as I couldn't get any further without my crutches.... I have to pluck up courage now to get Mark to bring through to the living room. Oooh he's cross with me. Pictures to follow....

Saturday, 21 July 2007

Not blogged for a week

I haven't had a lot of time for blogging this past week, but I have been regularly to the gym even though I have an agonising foot and it keeps swelling up constantly. I have been to the Dr's and they told me to go to A & E as I suspected they would.

Arrived at A&E on Wednesday morning around 9.30, by 1.00pm I decided that I had had enough and wanted the toilet and was hungry so went home. Result, still have a sore foot and no wiser as to whats wrong with it. I still firmly believe that it is flip flop syndrome though.

My running sessions have been a little shorter, but I managed 25 minutes on the treadmill on Thursday morning, I probably could have gone on longer but my foot swelled considerably after Tuesdays session, so I stopped. Not much swelling this time, but still very sore. It feels like very strong bruising on the top of my foot just above my middle toes. My Dad thinks I have gout and my Mum thinks it arthritic, either way I have taken more cod liver oil capsules and avoided pork pie sandwiches and port.

Grace is coming to the end of her IV course, due to finish Tuesday. She still has a cough which is very loose and seems to be coming from very deep down. Hopefully the muck has all but been lifted to the surface and will clear up now. Her breathing doesn't seem to be any better and her Sats were 90%, so there is a slight improvement, but I just get the impression that it doesn't really matter how many courses of IV's she has, they just don't seem to have an effect.


We have decided not to go to America. Grace has had a really tough year this year and I think the long haul and the general travelling around to see all of the sights may well just prove to be too tiring for her. So instead I think a nice warm October Tenerifeee holiday is in order, very relaxing and lots of playing in the pool in the sunshine......



Graces afternoon treatment of ceftazadine and tobramycin just about to be prepared.

Friday, 13 July 2007

Don't know if this will work but I'll give it a go??



Yay! it worked

C'mon if you wasn't sure, then surely thats enough to convince you that you are doing the right thing, become a donor today, its painless.

Thursday, 12 July 2007

Really Thursday 12 July

Today I have been to the gym. I did a 30 minute run and abs and leg raises and plank push ups.

I am going to have a road run on Saturday morning and I have gone back to my old trainers this week to see if that helps my foot. I can run ok on it, but it keeps swelling up afterwards. Honestly I've never had so many injuries (well I have actually, I've broken an arm in two places, I've broken a bone below my knee and I've also fractured my cheek bone before I took up running). I fractured my cheekbone on Newyears day when I fell up a step in the garden. I hadn't had any alcohol whatsoever and had to sit in casualty with lots of injured drunk people......

Grace has gone to school today with her scooter because she is doing a sponsored wheelie day. Its a bright pink flashing scooter. I had to change the batterys so that it would flash, and she scooted all the way to school, except I had to give her a bit of a push up hill. She also took sheets and sheets of Organ donation stickers to give out, we probably have enough for the whole school so hopefully we will be enlisting a few more donors

Tuesday 10 July

Well you would hardly believe it was July. Whats going on with the weather? Well actually its because of global warming but I'm not going to debate about that today.

I went to the gym this morning and did a good 37 minutes running. 'M' is in Majorca presently and will be sunning herself until next Monday and the changing rooms are having a refurb so I have not been hanging around afterwards other than to shower.

I did some abs work and I have gone back to leg raises as my knee seems so much better and able to cope with them. Before I was sort of hooking my foot onto the other foot to take the weight of my leg, so that would indicate a massive improvement.

My foot seems to be hurting at the moment, just above my three middle toes. I've come to the conclusion that I have 'flip flop' syndrome. I seem to get it often in the summer and I think it must be because I wear flipflops, I have had to put ice on it.

Grace is ok but still getting breathless when rushing around and up and down stairs. Last night she had a good bounce on the trampoline for about 10 minutes, prior to starting IV's she couldn't last more than a couple of minutes, but we are not sure if she is getting this from the IV's or whether she is just getting a boost from the steroids.

Monday, 9 July 2007

National Transplant week

I went for a run on Saturday morning, I did 27 minutes which I consider totally amazing as I haven't been out on the road for a while. I set my alarm for 20 minutes thinking that would probably be about as much as I could manage, but just kept resetting my timer and kept going. I could probably have done more but Mark had to go to work and we had to do IV's before he left.

I have been very stiff over the weekend which shows that I am not used to the road, so I plan to get out more often now, and with a refurb being done on the changing rooms at the gym, what better incentive.

Grace has been fine over the weekend and managing treatments OK. Surprisingly her breathing seems better than it has been already. This is all due to IV antibiotics and masses of prednisalone (steroids). I know that these things will help her intermittently throughout her childhood, but eventually she will more than likely need a double lung transplant........................

This week is National Transplant week, 50% of people awaiting a transplant lose their battle whilst still on the waiting list.

There is a serious shortage of donors. Please click on the following links and take time to consider becoming a donor. Thank you.

http://www.tryitandsee.blogspot.com/

http://www.pinkandsmiley.blogspot.com/

http://www.livelifethengivelife.co.uk/

Friday, 6 July 2007

Goth party photos




The Goth and punks party went down a storm!!........




All sorted

Grace was up early and ready yesterday to have her port accessed by the nurse, (that meant she had a shower and washed her hair) its no fun when you can't go in the bath for 3 weeks.

Her port was accessed in seconds without problem, as per usual. Entinox gas is the best thing that Grace could have discovered, she never ever complains, cries or flinches when accessed since she has been using it.

We went from there up to the hospital to have the first dose administered (by me) its standard practice when a family is about to commence a course of IVs and also the first dose is always done in hospital to make sure if there is any reaction, then we are in the right place to deal with it.

We went through the T.T.o's whilst Grace was on infusion (eating lunch and watching the Wizard of Oz might I add), and once she had been flushed off we were free to go. It was 1.00pm (shock) I can't believe how quickly we got in and out.

I was planning on going to the gym this morning, but Grace is feeling a bit sore and sorry for herself and needs Mummy around, generally so that she can moan at me and boss me around. Also I have a lot of jobs to do, which includes masses of paper work to sort out Faye's student loan, they consider that they are adult enough to have a huge loan, but have to get the parents to fill it in.

Its 'Take Mummy shopping day' today also, so that should be fun and Grace has the party of the year to attend at 4.30 (The Goth party). Her outfit has been ready for ages and its probably gathering dust, still it should add to the effect. I will blog photos as everyone has asked for a photo. The worst thing is that she wants colour in her hair and she only had it washed yesterday and then can't have another shower until 25 July.

The nurse asked us to make an appointment to see Dr S when treatment had finished because he wanted to discuss Grace with us when she wasn't around. Mark and I feel that he probably wants to talk about a possible broncoscopy and lavage, as I said before he wanted to find out what the cause of her problems were, and it wasn't showing up on any cough swabs, but Grace wouldn't mind hearing any of that as she knows whats going on, but then it makes you wonder what he feels he may need to discuss that she wouldn't benefit from hearing......

Wednesday, 4 July 2007

Poor Jamie

For goodness sake leave poor Jamie Oliver alone!! (well I know he's not poor but you know what I am trying to say).

All to often he gets slagged off for changing the way things are done in schools. Its the best thing he could have done. Have these people ever taken the time out to read one of his recipe books?

He is trying to educate the Great British Public to eat the food 'we used to eat'. When I was a young girl growing up in the 70's I didn't eat ready meals, they were virtually unheard of, except for maybe the odd Vesta with crispy noodles which tasted like dried up crispy wall paper paste.

I hear time and time again that our children (wcf) can't gain calories if they don't get to eat crisps and chocolate. Its total bullshit! You can calorie load any food if you want to and there are plenty of things that are an alternative. For example, Jamie would definitely endorse a company that sells sausages that are locally made from a local farmer using the best quality pork. How many calories would there be in that sausage fried with the same quality bacon and a fried egg? Or that same sausage served with a jacket potato and cheese and butter? The stuff your Mum used to make..... not the processed crap that we get today, that's all he is trying to say, sure he's encouraging fruit and veg, but I would encourage fruit and veg to all of my children with or without cf because they are packed with vitamins that they need to help fight infection.

I give my children without cf the same to eat as Grace, just she gets extra calories, maybe a splash of cream or extra butter or cheese, if she wants it. I do put treats in her lunch box for school, and the teachers are quite happy for me to do that, but they do comment that she has a healthier lunch than the other children.

Grace loves salad, I add olives or pasta or fried or roast chicken pieces to it and even a blob of mayonnaise will add calories. As for treats has anyone that slates Jamie ever prepared his home made chocolate chip cookies?? I can tell you that one batch of those can pile on calories.

So I just want to say give a bit of thought, he has your children's interests at heart regardless of the change in the school menu... and they can always bulk up more when they get home.... I'm not saying that Grace never gets crisps or chocolate or MacDonald's, just no more than the other kids in the family, as a treat.

JAMIES CHOCOLATE CHIP COOKIES

Ingredients

325g flour
255g room temperature unsalted butter, cut into cube sized lumps with one lump kept aside.

170g sugar
1 free range egg yolk
as many handfuls of chocolate chips as you dare.

Preheat your oven to 180c, rub a baking tray with your saved butter cube. Put the rest of your butter in your mixing bowl with the sugar and beat it with a wooden spoon until it's all light and fluffy. Stir in your egg yolk, then the chocolate chips and then the flour. Mix until you a get a lump of dough. Then tear off pieces of dough - any size you like - and roll them into balls.

Place them onto your buttered tray, but remember to keep them 5cm apart as they'll spread when they start cooking.

Bake them in your oven for 10 minutes. When they're done, take them out of the oven and let them cool down a little before tucking in.

More blog

I have decided as I was reporting on yesterday and today, I will split my posts for each day.

This morning I decided to go to the gym again whilst I had the opportunity. We will be at the hospital for most of tomorrow and I may or may not be able to get to the gym on Friday morning.

I did a 10 minute run at level 6 (I normally do level 5 random) and then 15 minute run at level 5 followed by 5 minutes without incline by whacking the speeds up to eventually 10. It makes you sweat terribly and its totally exhilarating! I did no other work in the gym but went on to have a swim and did 10 lengths of the pool, where I nearly drowned laughing at a man that pressed the cold button on the shower by mistake and let out an almighty yell followed by gasps which echoed all around the pool area.

Yesterday when we went to Starbucks Mark bought me a book from Borders below. It was titled 'Poker for Dummies' (Suzie it really is one of those things you need to do).

I have been watching for some time but decided that I must get involved. I keep winning and Mark thinks thats because I will play or call the most stupid of hands and he will play what he thinks is a good hand and then folds because he thinks that I must have an incredible hand to not fold, therefore he can't read my bluffs because I haven't got a scoobydoo myself. Follow that?..... it is a most incredible game and an incredibly complicated game which I must learn now.... I'm totally hooked.

Grace is at school today and her port is being accessed in the morning so she will be off school tomorrow and I will keep her at home Friday as she normally feels a bit sore the next couple of days, but at least she will have the weekend to get used to it before returning to school on Monday.

Big sighhhhhhh!

Went to the gym yesterday morning and did a good 30 minute run. On the cool down when there is no incline I decided to speed things up a bit and ran at 10kph instead of the usual 7.5 to 8 that I normally do. It really was good fun and I decided the next time I go I will incorporate it into my routine. I did lots of arm work, these include 3 different weight lifting machines and drops from a bench (they are sort of like backward push ups) from a seated position you lower yourself up and down from the ground back to bench height, but the bingo wings are still swinging.

After that I did some tummy work and stretches and had to make a speedy exit as Grace had a clinic appointment.

Mark has being saying they won't be happy with her when we next go to clinic. She has been breathless so I know her sats would be rubbish, but we, including the Dr's, have resigned ourselves to the fact that they will never go back to what they were, she used to average around 95-96 but these days 88 is good, her lung function wasn't great either and the nurse felt it wasn't from lack of technique because she can do it pretty good these days.

So yesterdays clinic - Sats 88 lung function poor, don't know what it is in percentages but she managed a 0.7 at very best. This prompted Dr S to send her for xray and had a plan to go along with whatever results came back.

We returned from xray to discover large cloudy area and atleast 10 clearly visible mucous plugs. Dr S seems to think that it is pseudo that is the cause, but coughs swabs don't seem to produce much at all. Therefore he decided that a more agressive way of testing the pseudo was what was needed (not sure what that will be yet, but I have some ideas).

Dr S also seemed a little perplexed as to why there was a drastic dip rather than improvement since her last lot of IV's in June and the introduction of Tobi nebulised. Therefore she is back on IV's for 3 weeks from tomorrow plus big increase in steroids and then intensive cipro following the IV's. I really hope that kicks things into touch, and then finally, at long last he prescribed some ranitadine. The dietician has been on to him for ages to let Grace have a months trial and of course the weekends antics was another chance for her to push it.

The sad thing is, my friend works on reception in the xray dept and she booked us and got us through quickly, but commented on how well Grace looked. It really wants to make me tear my hair out, when I saw the xray I couldn't believe it.

We didn't get out of there until 4.20 and her appointment was 1.30 so Grace had to miss her swimming lesson, she was gutted and also she has to miss the next 3.

Poor girly, we actually went to Starbucks afterwards to get a coffee and we parked in a disabled bay because Grace was in pooped mode and I've never seen her so down. Honestly if anyone had tackled me with regard to parking there today I'd have got the xray out of my bag and rammed it down their throat! (Well not really, I'm not violent, its just idle rantings) but the fact that walking upstairs and taking her dress off and ankle socks to get into her nighty last night left her struggling for a while to regain a reasonable chest rise makes me very worried presently.

Saturday, 30 June 2007

Tummy ache

Last night Grace developed a tummy ache, it was the one with 'the waves'. Oh no I thought, we are in for a restless night.

She has complained a few times on and off lately so I decided to give her some tummy massages and extra lactulose. Eventually she was so tired that she drifted off to a somewhat restless sleep. Mark commented that her tummy had probably settled and that she would probably sleep for the night. No sooner said than she coughed and I had the amazing speed of a gazelle and bolted across the room with potty in hand (always there for emergencies when Grace is unwell) in time to catch what was following the cough, except for a little bit that splattered on her nighty, which we changed and cleaned her up a bit and she didn't even wake up.

This morning when we told her, she had no idea(very strange) and also she was pretty much very restless for the whole night, and didn't really relax until around 3am. I actually watched Big Brother until they had all gone to bed, there was nothing else on but horror films.

This morning she was still feeling a little nauseus and still hadn't been to the loo, so we have given her 50ml of gastrografin and we are on emergency alert, she has been once but nothing major, so we are prepared......

Meanwhile Mark has been shopping for a present big enough to compensate for 50ml of gastrografin....

Friday, 29 June 2007

Weather and horses

I've been to the gym this morning. 'M' wasn't there so I took advantage of a long run and did a 5k. I tried putting my headphones in (normally because I am chatting with my running partner I have no need for them) and watched a little of the golf, but they get on my nerves and I feel like I'm not running to my full capacity as I am trying to keep my ear plugs in. I may purchase some of the really old fashioned type that go over your head and sit snugly over your ears.

After my lovely long run I did lots of arm work and abs and waist. When I left the gym it was raining (again)although judging by what I have seen in the news all of this week, I am glad I live at the top of the hill. A river runs across the bottom of our Cul-de-sac (always wanted to write that!) which divides us from the golf course. Bizarrely, there are people playing today and its not flooded.

Yesterday we went to Warwick racecourse for an afternoon meeting on account that we didn't get to the special 300Th anniversary one last Sunday due to, yes you've guessed it, the weather.

As I am normally in partnership with my Mother-in-law on such days out, we pool our money together and then we would normally have more winners (or so you would think). I hate backing short odds favourites but Marks Mum loves them, hence she had two winners and I had one, but my 11-2 winner paid out far more than her two put together. Unfortunately I couldn't pick my nose for the rest of the afternoon and luckily broke even. Mark had a better day than me, but mainly because he bets away from the course as well.

Our plans have been drawn up for the extension to the kitchen and are now with the department at the council that gives planning permission and building regulations. We don't need planning permission but we need to have the building regs in place and also another detail with regard to the design being built right to the boundary so that the neighbours can't contest when they realise that we have to dig out all of the concrete on their side of the fence.

I have sort of made a rough plan of the kitchen on the Ikea Kitchen planner, and I will try and post a picture of it. Its not to scale because I'm not a maths genius by any stretch of the imagination (there must be something that I am good at?)..... actually I do make a mean fairy cake.

Grace is due in clinic on Tuesday and she seems to be developing her cough in time for clinic. She is also due to have her port flushed on Monday. She is still feeling a bit 'pooped' and a little breathless but not really feeling unwell. Still I think she maybe harbouring something and might benefit from a change in antibiotic.

This weekends plans are ballet presentation tomorrow evening and possible going to see Shrek on Sunday and lunch out... not even the weather can spoil that.

Wednesday, 27 June 2007

Blog titled Wednesday

Went to the gym this morning and did a 30 minute run and some abs work. Thats as much as I could do because I had a 'funny tummy' all bloated and stuff (it must be my age) or I could still be recovering from how much alcohol I consumed on Friday, probably the latter.

Anyway 'M' and I (no Mark not the one from 007) had coffee and toast and put the whole world to right and then I went home and did a big blog on coping with Cf and having children after already having a child with cf and then deleted it all because it just winds me up sometimes.

Time capsule event to be logged for this month - Tony Blair resigns from Office and is replaced by Gordon Brown as PM.

I have downloaded an application form from the Make a Wish Foundation today. I would like to enlist their help in getting Grace to a pop festival. I know that it is virtually impossible for her to do a weekend, but after Glastonbury this week she has talked of nothing else. She is a huge music fan and the idea of watching all of her favourite bands in a weekend just blew her away. So how would we manage her meds and nebulisers in a tent in all that mud just so that she could see Fall out Boy? she doesn't even want to meet them, just attend and watch the gig. She's such a funny old girl......

Grace remains breathless this week, although she is quite dry she has struggled to get her breath back after exerting herself and she has been hoarse and croaky again, but generally she is well. A post on the adult forum discussing tobi and colomycin brought to my attention that Grace had complained of a lot of headaches last month and hasn't recently. I will take note this month whilst back on tobi of her headache complaints.

Friday, 22 June 2007

Take That

Yesterday I went to the gym, I did a 30 minute run and it was very hot even with the air conditioning right over head. Also my hay fever has been bad for the last couple of days, my eyes have been itchy beyond belief, and I get some tightness in my chest which was apparent whilst I was running. I wasn't going to let it defeat me though and did my full run. I decided to skip any floor work today though and instead had a nice swim and half an hour in the jacuzzi.

This week at the gym I have taken to having coffee and lunch upstairs afterwards whilst reading the paper and choosing my horses for Ascot. So far though I have had no winners, not even a place. I must try harder today and win back some money as I am going out tonight, to the Hilton Hotel to see a Take That tribute band. Not entirely my cup of tea as anyone who knows me would know I'd probably prefer to see a Sex Pistols or Black Sabbath tribute band, but I was lured by food and alcohol and generally a good giggly night out with the girls.

I've had my hair cut again today and coloured, its quite a dark brown this time, but with some bronzey sun kissed highlights (so I am reliably informed by the hairdresser). So I am sympathising with a friend today who hates female hairdressers. Today's haircut was a spur of the moment thing which meant any of my favourite stylists were not available. I prefer men to cut my hair as a rule, I just think they are better. But today it was cut by a little girl that I had never seen before, she was tiny, at one point she went to get a stool to kneel up to finish the back! but did she waffle on, crikey, she knows where I'm going tonight, where I'm going Sunday, where I'm going for my holiday, what my husband does for a living.... she would be perfect for the Spanish inquisition.

Anyway during this time she was blow drying my hair bigger and bigger and bigger, I began to look like Sue Ellen from Dallas. All could think was if I don't get out of here and get another appointment somewhere else to sort it out I'm not going out this evening. I left the salon with sunglasses on and put my hair band straight in as soon as I got out of view of them. I went to get a coffee to take home and switched on the straighteners on to see what I could do with it. Thankfully after calming it down with some straightening and a bit of wax (a piece of string and a flux capacitor) it was a very nice cut underneath...... now I just need to decide which of the three tops that I have bought to wear.

Grace is very excited that I am going out tonight, she and Mark have a written out itinerary of what they are going to do to fill up their evening. She has been a bit strange over the last few weeks.

Firstly as it is national walk to school week (which we do everyday anyway) to mark the last day they laid on breakfast at 8.15 for pupils, it consisted of rice crispies, toast and jam and orange juice or milk. Grace signed up immediately, but the bottled it half way through the week. I don't know if its because she hears Mark and myself talking about how difficult it is to manage things like that - getting all routines done in the morning and then taking meds in with her, but I thought we could cope.

Also she is being a bridesmaid Nov 2008 for Marks brother, they just told us that she was one of the bridesmaids and never really asked us and didn't even stop to consider if it would be feasible, wedding day schedules are tight, no room for sitting on the toilet for half an hour or waiting 20 minutes for the feeling of sickness to go off after scoffing your breakfast down really fast when you have just done physio, or leaving you in a house full of bridesmaids with the Mother of the Bride who is in panic mode anyway let alone trying to work out how many creon to give Grace and that's if they allow her to eat anything once inside her bridesmaid dress (Grace you will have to have your funny turn after the ceremony and not overshadow the bride).....

OK, maybe I am over reacting, but it would have been nice for it to be discussed first whether it could be done and how to get around it. This all seems to have had quite an adverse effect on Grace and now she refuses point blank to be a bridesmaid or do anything that might involve a bit of juggling and preparation, that's why I feel she bottled the breakfast this morning. I really need to think through how I approach things like this in the future, but how?

Tuesday, 19 June 2007

Royal Ascot

The Golf courseGraces umbilical cord

When you are drunk and you have more than one blog, its very difficult to keep track of where you are.

My Royal Ascot attempt today was rubbish. What I thought was second favourite was actually second to last, and the rest were long shots..... very long shots. Note to self, must do better tomorrow.

Went to the gym this morning and did a 4.22k run (i've taken a liking to measuring my runs in k's). It took 30 minutes. I stopped there because I was with 'M', she always does a 10 minute warm up and a 20 minute run and so that we can do the gym together, I always comply with this. We did some arms and abs and showered and then had a coffee and a very long chat about the weekend and stuff.

Strangely we both went to see Fantastic 4 at the same time and didn't even know we were in the same cinema audience. Very good film indeed and Grace didn't need to go to the toilet once, although we both had fish food and cookie dough and were both wearing white t'shirts (not good in the dark) anyway vanish took out the stains.


Anyway because I couldn't get to Ascot this week, I decided that champagne was very much called for, hence the wandery post. Next is big hat day, so watch this space for photos. Whilst on the subject of photos, I have taken some pictures as promised from previous posts.

Grace has been swimming today and she said that she found it very difficult, and to be honest when I came down to the pool side to collect her, I could see how she was struggling to get her breath even from a distance. I assured her though that it was very good exercise and she agreed with me.

She asked me when I was born today, when I replied "1962" she said " thats quite near to the great fire of London"!!!!!.......Kids!

Saturday, 16 June 2007

5K

I went to the gym yesterday morning. I wanted to go Thursday, but Tescos decided that it was the day they were going to deliver my new garden furniture.

I normally meet 'M' on Thursdays and she is always there before me so in order to catch up with her my run on the treadmill needs to be shorter. So today I thought I would go for a good 30 minute run and set the countdown on the treadmill for 33 minutes to include warm up, on what the hell I thought, lets put 40 minutes in.

Well I ran the full 40 minutes and had done 4.64k at this stage so I decided to speed up the cool down for 3 minutes to get a true reading of 40 minutes. After that time I wasn't quite at 5k so did another minute of running which took me well and truly over 5k! Thats the first time I have done it non stop, I could probably have done it long ago but never tried. Anyway it was easy, so I am going to attempt it on the road tomorrow although my legs were useless last night, they were stiff beyond belief every time I tried to get out of the chair, and its not for lack of cool down and stretches, I even had a leisurely swim and a blast in the jacuzzi (its lovely to get the jets of water pummeling your achy muscles).

After my run I did some abs and arms work and of course the swim.

Grace continues to have a good spell at the moment and I do think its because she can get out in the garden and on the trampoline and able to go swimming lots at the moment.

I read a post on the forum about low sats and lung function and someone said that they thought diet attributed to better lung functions and energy levels.

The poster commented that he eats healthily and doesn't dwell too much on the high fat issue. I have always given Grace a balanced healthy diet as opposed to a high fat content. We are lucky that Grace is a good eater generally and has a good appetite, I understand that lots of CF sufferers have virtually no appetite and struggle to weight gain, but so far have never had this problem with Grace and she continues to eat well really.

There has been a period up until this week that she has been off her food but now she has regained it we have made sure she has had lots of pasta and fish and vegetables and she takes masses of fruit to school everyday and she eats it as a rule. Grace loves mashed potato but we tend not to put any extra butter in than we serve ourselves, maybe its because she just doesn't like extra fatty stuff, who knows? one thing I know is that I couldn't eat loads of extra fatty things, my Mum always puts enough butter on a sandwich to grout the bathroom tiles with and have some left over, and I've always had to inspect in before she puts the filling on and scrape it back off again (no wonder she has high blood pressure and has to take pills for her cholesterol) but at 83 I don't think she really cares.

Anyway we are making the most of this good spell whilst it lasts, its just a shame the weather has gone a bit down hill, you should the see the golf course at the rear of our home, I can't imagine they have many annual members, they would never get a full years play.