Monday, 29 October 2007


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


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


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..........