Moving on

2009-06-10T13:23:00.004Z

I went to see Take That last night. They were awesome! I don't believe I have ever been so excited?!..............today, however, I have lost my voice,and I am going on a course this evening. Ho hum!

2009-05-14T10:35:00.003Z

It would seem that there aren't enough hours in a week to fit everything that I need to be doing.

I have a problem with commitment, not lack of commitment, but actually saying 'no' just no I'm sorry I can't fit it in, and my poor husband is suffering silently but I know he's cross.

I have been running every other night and trying to build up my distance, but bizarrly my distant is less? I think it is mainly to do with worn out muscles and they are in need of a rest. My breathing techniques are much better, but I ran this morning on my old regular route and had to stop after 25 minutes because the back of my lower legs were just pounding. I'm going to run again on Saturday morning and try the same route again to see if it was just a one off.

I have had church commitments, and work and NVQ stuff and people ask me all of the time, could we meet for this? could we do that? and I hate to turn people down, so I say yes, and have no time left for myself or my family. I have already agreed to run Friday evening and remembered I have promised to go to the pictures with Mark and Grace because I was running when they went last week (although I didn't really relish the prospect of Hannah Montana) this week it is Coraline and I am a bit of a Tim Burton fan, so I have to cancel my running and change it to Saturday morning instead. That then frees me up on Sunday, because the last few have been spent at church in the am followed by running in the afternoon whilst Mark cooks Sunday lunch and looks after the children and its his day off too.

So, knew commitment, learn to say no before I burn out and take everyone down with me....

2009-04-17T10:56:00.004Z

I stole this from another blog because I was deeply affected last night by an episode of 'Grays Anatomy' it was quite controversial, and for a while, a lady refused to give up her husbands organs because only two days before he had been perfectly normal, and then in that short space of time she had to make the decision to swich off the machine that was keeping him alive. It must be a very difficult decision to make when faced with giving your loved ones organs, but the gift of life is a legacy in their name. I for one am an organ donor, and if your not, become one today it takes 5 minutes to become a hero.

Something to convince you of your decision -

This -

2009-04-13T20:14:00.001Z

Helloooo!

I've been so poorly. I apparently had a chest infection, I went to the Dr's after symptoms such as shivery, sweaty, and generally very tired and rough feeling lasted into day 5. I had pain at the back of my head, in my glands and throat and ears.... the Dr at the walk in centre decided it was a chest infection even though I didn't complain about my chest?

So I finish my antibiotics tomorrow and I haven't been able to go out running for 10 days now, and its been torture. I really need to get back out there now, but today is the first day that i have managed without ibuprofen for head pain (technically I think I have had sinusitis) but i'm not a Dr.

Anyway Happy Easter! Grace had been unwell too, she had silly temperatures, 38.9 and such like! but no other symptoms and thankfully it has cleared up without any evidence of anything.

So Friday we went to see 17 again, its criminal looking at Zac Efron without his shirt on at my age! I should be far more interested in Matthew Perry. On Saturday we had to do some shopping for Baptism gifts for my friends daughter and also some Easter gift shopping for Dood who told me he had bought an Easter egg even though we weren't doing gifts for each other, so I bought him an Easter Morrisey cd. After Grace and I had been to the Christian book shop near the Cathedral, she decided she wanted to go up the Spire (gasp) so the lady didn't charge us incase she couldn't make it, but she did all 181 steps and back down again, and at a reasonable pace. She got a certificate verifying it with her name on too! However, I had to virtually drag her back to the carpark saying "I told you not to do it" but she had a great time. From the we went to Nannas for tea, (Easter tea as we could not be there on Sunday). I had a very special event going on, on Sunday.

Sunday morning we went to church and the Church leader delivered the whole sermon dressed as a white rabbit. We had a big family lunch and in the evening went to church again for baptism.

Today we went early to Starbucks for coffee and cakes ( ( had a muffin) and then we went horse racing at Warwick, I don't normally like going on a bank holiday because its full of girls in very short dresses and very large cleavages and lots of fake tan swanning up down like they are on a cat walk put £1 each way on a 2-5 shot and the bookies just taking the bet, anyway I'm only envious because I would probably look like Monica out of 'Shameless' dressed like that and I didn't have a winner all day.

After that we went to our usual Easter break fair and went in the fun house and the dodgems and had a go on hook a dook and went in the arcade to do the slot machines and penny pushers and all of that stuff. We have since come home and had take out dominoes pizza and these chewy hot cookies with chocolate sauce that has given me incredible tooth ache! ...... time for more ibuprofen I think? but still it was a great Easter break especially as Dood has been off (not at work, not as in gone off)to do it all with us.

2009-04-08T09:58:00.002Z

Bad week, I've been ill since Friday and I went to the walk in centre last night because its just going on too long, and top of that Grace is unwell also and I'm struggling to look after her..........

It turns out that I have a chest infection, which is totally baffling as I can't feel any tightness, any wheeziness, no coughing or generally anything wrong with my chest?? I have a lot of congestion in my throat which makes it hard for me to swallow, I have a heavy head and swollen glands and I sound very nasal when I talk,but no cold symptoms (secretions). The Dr did however, say that my blood pressure was high.....again I am baffled, I keep fit and don't normally have problems with my blood pressure. Its possible that its just because I am poorly or the fact that I had to drive to the walk in centre by myself at night which is very close to the town centre.

Grace has had a major high temp for a couple of days, but no other symptoms, she is much better today, but still relying on Ibuprofen and calpol, but nowhere near as high. She is on 500mg of clarythromycin anyway so hopefully that will nip anything in the bud.

So both of us have been tucked up in bed for a few days.

I did go to see 'We will rock you' even though I was trying to get rid of my tickets on the morning of the trip at 6 a.m because I felt so ill but it was too short notice and I ended up going absolutely full of medication, it was a long 12 hours but I'm glad i got to see the show it was absolutely fantastic..........

2009-04-02T09:27:00.002Z

Man have I had a busy week? I've had to work (violins) and prepare for ofsted and prepare for my NVQ observation. Whilst doing that I have also done lots of piano practise to get ready for my grade1 and I am still doing my Alpha course.

We haven't heard anything with regard to Graces disability status as yet but that could be due to me being late sending in passport sized photos of Grace, and also if they are still giving it some thought and discussion then that has to be a good thing.

I have been for a run this morning and it was last Thursday when I last had the opportunity. I've decided that I will run tomorrow morning or atleast go to the gym and try to catch up on where I've missed out.

Today is the much awaited first day of Aintree and I have made my selections as follows-

2.00 Hills of Aran
2.35 Walk on
3.10 Exotic dancer
3.45 Sonevafushi (nap)
4.20 Poquelin
4.55 Chapoturgeon (not usual for me to pick favourites, but its staring out of the page at me?

5.30 Font and i've also had a little bet on Whinstone boy (a friend springs to mind)

I have not yet made any selections for Saturday and I can't believe that I won't be around for it! I'm going to see 'We will Rock you' in London, and whilst I am very much looking forward to it,I can't believe its Grand National Day! It would have been the first one I would have spent with Mark since he was no longer a bookie!! (he was working for the last four of them). Oh well, I'll just have to find somewhere to have a pimms and try and watch the big race, atleast I will be able to watch it recorded.

Instead I will be singing 'The seven seas of Rye' at the top of my voice........

"Fear me you Lords and lady preachers,
I descend upon your Earth from the skies
I command your very souls you unbelievers
Bring before me what is mine!
The seven seas of Rye".......ooh I'm well excited...

2009-03-28T00:53:00.003Z

I learned this evening that Louis, someone who frequented the CF forum, died this week. He was 18................what can I say? CF is relentless.

Party on dude!

God bless your family and rest in peace xx

2009-03-26T13:01:00.002Z

Today I rang the DLA department to discuss the reasons for Graces allowance being dropped to middle rate.

They feel that she doesn't need anymore care at night than a normal child and no other points (even though we wrote 3 A4 size pages) had been raised.

Criteria

Grace can be toileted before we go to bed, and a drink be left at her bedside which is ample for her throughout the night. If she has any other toilet issues then incontinence provisions should be made. Grace can make her own way to the toilet and she is of sound mind. Even though we did not apply for mobility they have also decided that she does not qualify for this either because it is reviewed without our input at the same time as the DLA request, so no updated paperwork was sent in for them to peruse over. The original paperwork says that she can possibly walk 150-200 yards on a good day at a slow pace, however once she gets that far, if we had no wheelchair, we would be stuck there, I also pointed out to the lady 'Yvonne' that I spoke to, that she should imagine taking her child to Alton towers for the day, and after 10 minutes her child said 'that's it I just can't walk anymore and I'm really out of breath,so much so that it hurts'... would she then carry an 8 year old around all day? and quite a heavy weighing child (steroids)? and then that child would spend the day concentrating on breathing at a reasonable rate and staring at a parents shoulder instead of taking in scenery and enjoying the surroundings and partaking in the day out if not for a wheelchair.

Still those issues are not the criteria required. They did say, however, that the council in our area are totally responsible for the blue badge decision, providing we meet their criteria and it varies from area to area.

The council have sent out forms for us to apply and we have returned them and awaiting the outcome, but they did say that their criteria is of the same value as the DLA office............

So somewhere along the lines of all this b**lsh*t does anyone feel that we are entitled to any of the benefits or disabled badge? They have truly convinced me its not worth bothering now because they are absolutely right, we are not entitled to anything more than we are receiving and Grace can have a wheelchair to get about with absolutely no need for a disabled badge.

Incidentally my brother in law gets a disabled badge for his hip replacement, he was in extreme discomfort before he had his operation, but now he is fine and he still has a disabled badge. That's great and good luck to him, but the mentality of the decisions they make is ridiculous.

Well that's my gripe for today,I'm almost certain that both the appeal before a tribunal and the disabled badge won't make one iota of difference now, but do I need to go to the press to just shame them into re thinking their criteria?

2009-03-19T22:56:00.001Z

The results from the appeal for the drop in DLa from Higher rate to Middle rate came back today........ofcourse we will be appealing again.

2009-03-18T16:20:00.002Z

I've not blogged for ages, not for lack of caring, but my pc broke and I have to rely on using Marks Laptop which he never gets off from morning until night, and asks me if I want to use it at 10.00pm?....er no!

Anyway he has gone horse racing today so i've got complete use for a bit.

News - Mark has decided that being a self employed painter and decorator is not bringing in enough money so he has taken a job at a company that supplies power tools and he is now the new 'Buyer'. It means that he will be working in Nottingham, about 45 minutes away, but it keeps him off the pc at home haha, and its a regular income that you can plan around.

Serious work has been going on around the house to get me ready for my ofsted inspection so that I can start childminding from home as opposed to being an assistant to a neighbour, so we now have gates and fences and stuff and I am already sick of nearly pulling my arm off trying to open safety locked cupboards and drawers.

Grace went to BCH last Wednesday and generally the trend is moving up on sats and lung function even though her lung function was worse than last time, but her chest sounded relatively clear. Her exhaustion problem remains an issue and Dr W said that he felt because Graces lung damage was so severe it was just using all of her resources all day which made her need for a massive recovery. I was happy with that explanation but as per usual it wasn't enough for Mark, he needs answers to everything and now. Therefore Dr W decided to put her on a booster course of steroids, which in my opinion just makes her a bit fatter and more out of breath. Its supposed to be followed by an increase of 5ml to 10ml every other day. Let me tell you in caused a major divide between Mark and I, he says that Dr W is the expert, which he is, but he likes parents input and I failed to jump in with " I feel that she has been at her best lately and she even has used the trampoline a few times lately" and also the issue with being overweight on steroids cause her to have more of her episodes. So the compromise is that she has the booster course but she is staying on the 5ml,although Dr W doesn't know this yet, and neither does our team at Coventry because I have not heard from them, I left a message with the nurse to say Grace was staying on promixen for another month because I can't get any tobi anywhere at the moment, but I haven't had a reply.

I emailed a local MP last week after receiving a circular through the door entitled 'Your views matters'. I discussed the issue of not being able to get a blue badge as we do not receive higher rate mobility and the parking permit office at the council say we only qualify if we receive it, however,their webpage shows other criteria that Grace fits into which means it is wrong or contradictory.

Bob Ainsworth wrote back to me to say he was waiting to hear from CC Council.

Yesterday a lady from the permit office contacted me, she said that we needed to be receiving the mobility at higher rate, but I mentioned the different criteria on the web page and she went on to ask when we last applied for mobility, it seems it was December 2007, but it has to be (her words not mine) two years since you last applied, before they will consider reviewing it (reviewing something they told us we could not have if we didn't receive mobility) b*ll**it springs to mind!

She went on to say that we could re-apply and they would look at it again,but they work on the same basis as the mobility department, or, we could re-apply for mobility but if they turn us down they can't look at it for another two years, confused? I am, but still we will try, and if we are turned down again I will forward all of this information to Bob Ainsworth to peruse.

Graces DLA has also been lowered to middle rate, but thats not something I am going to go into today, but we have appealed.

As for exercise, I have been going out on the road more than ever, and I have been really enjoying it. I will be out on the road tomorrow morning even though I have joined another gym, I just can't get enough of the open road lately, it must be because of the fresh air and the chance to just think about yourself for a bit.

2009-02-28T15:27:00.002Z

Grace has just finished a course of IV's on Thursday. Whilst on them she struggled terribly. Firstly because she was on meropenum this time, which really makes her feel rough and also because she had a much longer needle in this time round and it was packed out mainly because it was sticking quite a way out of her chest,consequently she found it painful to jump around etc.

We found that we couldn't do percussion because it was very uncomfortable to lye on her port so she did two weeks of acapella.

She seems fine and seems to have crazy bursts of energy for an hour or so then she goes right back to her extreme bouts of tiredness. We don't know what it is, but have resigned ourselves to the fact that some people with CF have this whatever, and certainly having spoken to others with CF it seems to be the case.

The nurse advised us to put her to bed earlier to try and counter balance it, the suggestion was 15 minutes earlier each night, so we are currently in the process of trialing it and I will update any results when we feel there is anything.

Presently she has just lay in bed and twiddled her thumbs and will not go to sleep, last night she was in bed for 7.45 but at 10.10 when I went upstairs, she was still wide awake. We have been advised to not let her read or watch tv or anything that will detract away from absolute rest (which we have allowed her to do in the past just to try and make sure she stays in bed) the thing with Grace is that she is always exhausted very quickly, and will lye down and have total rest,but will not go to sleep. She does sleep at night and does't have a problem sleeping, but can't be forced to sleep when we want her to sleep.

I have been stepping up the fitness again and have been going to the gym on more of a regular basis, even though now it has to fit in around work. Tomorrow we have not got to go to church as it is 'Community week' this is where our small house groups do 'Church' out in the community, be it feeding the homeless or litter picking. Our house group has other commitments this month and we feel also that Alpha has been a community issue and preparation for that alone is a community project, also some of the group are attending a CAP course which is also a consideration to the community. So what I am really trying to say is I am at a loose end tomorrow. My plan therefore is to do a very long run and see how far I can actually do, so watch this space and see if I am prepared for a marathon yet, or half marathon, or 10k or 5k............

2009-02-08T17:43:00.003Z

Today I didn't go to church,(and missed greatly) it was because Grace had a 'sleepover' for her birthday. Phew! that was tiring. The girls did some great stuff, they had KFC and then had a competition where they had to make a dress from a bin bag and assorted plastic bags, and it was very difficult to choose a winner. After that they had their nails painted and stuck with all kinds of gems and transfers. They then went on to watch a dvd and talk into the small hours......... I turned the lights off at 11.00pm and at 2.00am they were still chattering!

This morning they all got up at 7.30 am and had pancakes with syrup and fruit for breakfast, followed by washing and dressing and screaming and giggling. Whilst they did their last task, painting their own ring, I got all of the clothes, suitcases, teddies etc together and parents came for coffee (that was 11.30) at around 12.45 Grace came to an abrupt halt.... and is just about awake now, she has eaten her dinner and is almost back to normal (hmmmph I'm glad she is) anyway, I have just had a glass of wine and am having a read of the 'good book' in preparation for alpha on Thursday, no doubt I will sleep well tonight haha!

I have re-joined a new gym this week, its much closer to home and costs a lot less than the other one. The main reason was for the value for money, the other gym was costing me an absolute fortune and I was constantly complaining about how dirty it was and broken lockers etc, and already I've noticed a big difference in the cleanliness. I haven't been out on the road for around 10 days but only because its very difficult to run in snow\ice without breaking ones ankles. So back to the treadmill for a bit atleast until spring.

Grace has had several invites to Jam Jam Boomerang at half term, but sadly she goes on IV's the day before they break up from school so ball areas are out of the question, I'm sure she will think of some other way to spend all my money though.....cinema springs to mind.

Off for a much needed soak in a candle lit bath now.

2009-01-30T23:10:00.002Z

The last time I was deeply affected by a film, it was 'The Killing Fields' and I remember trying to explain to someone at dinner the following evening what the film was about, and it made me cry a whole day later!

I have just watched the most incredible film, and I am sure it will have the same effect. I have just cried most of the way through it..............this time the film was 'Into the Wild'

It comes very highly recommended, but I just wondered if anyone feels they can recommend a 'must watch' film or even a 'must read' book?

I am currently reading a few books, I get carried away and have to start them all at once, presently I am trying to read 4 books, 'The year of living biblically' (very funny), 'My bookie wook' the bible, (attempted many times, but now I have a plan) and then I am reading a bizarre book, which I have been for sometime, but it is hard work, but I won't be defeated, this one is called 'Human Traces' by Sebastian Faulkes, its about lunatic assylums (probably the right choice for me).

So I need suggestions to get me well read and well watched..... following in the footsteps of my very good friend, this is from my 'to do' list, so any suggestions would be much appreciated, I do however, have the complete box set of Lord of the rings including The Hobbit on my bedside table in the queue...............

2009-01-28T19:14:00.002Z

This year I raised £90.00 from the sale of my little diddy Christmas cakes.....

This is where the money is going this year.......

This little boys Grand Mother is a very good friend of mine, she has been very helpful throughout Graces life in helping me raise money for the CF Trust and a massive seller of Reindeer Food. She was really excited about the arrival of her very first Grandchild Eddie Paskin.....please take a look at the link.

2009-01-22T12:28:00.003Z

Mark spoke to the DLA office this morning to discover why they had made the decision that they did.

The reason is that they feel Grace no longer needs the overnight care, as she is no different to a normal child in that respect. Mark then mentioned about the mal-absorption and the need to go to the toilet with absolute urgency and their reply was "take her to the toilet before she goes to bed"

So a normal child would have to get up between 2 and 5 times a night would they if their creon didn't pan out in the day in the way that they would have liked? and ofcourse any normal child would wake up screaming 'I don't want to die' on a regular basis, or ask you to sleep with them and distract them so that they are not alone with their thoughts, and a normal child would obviously have their night sleep interrupted everynight in the early hours so that they could have their IV's administered 3 weeks out of every 3 months or wake up with wild nightmares because of the extreme medication they were on??

Of course I can see the similarities now, how silly am I?

I don't care about the benefit being dropped, but I got sick of pushing for the disabled badge and gave up, but its made me think why should we settle for second best? We got turned down for mobility because Mark put that Grace could probably walk 150 yards but it would most likely have a detrimental effect and she would be off school the following day because she just couldn't do it, not even 10 yards.

I now feel like my heart is in my shoes and dragging on the floor and just can't stop crying when I think that I will have to stand before a tribunal (if we get that far) and beg them to let us have a disabled badge and prove to them that she is in need of the benefit to a stupid pen pusher who knows nothing about my beautiful girls illness and never will other than looking for 'key' words on a DLA or mobility form.................do you know what? I don't think I can even be bothered to appeal, we have a choice of it being viewed again, or asking for an independant body to review it, and they are only going to come to the same conclusion by reading the same form, so what is the point.

And as for "Why don't you take your child to the toilet before they go to bed?" I've never felt so humiliated in my life, why do I have to explain this to people who don't know, why aren't there qualified people in this position?

2009-01-21T23:06:00.001Z

I'm doing this

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

Why?

2009-01-21T16:52:00.003Z

Why when Grace was diagnosed at 13 months old and we were told we could apply for DLA, did they, without question give us the highest rate?

Why, now that she is almost 8, worse now than she ever was, be awarded middle rate?

Why? as much as we try, even though she spends days and excursions out in a wheelchair, can we not get mobility?

I've had enough now and I am going to the newspapers with our plight! I really am sick to death of red tape and systems put in place as to stop people from 'taking advantage' .................. I cannot believe how angry I am, and something has to be done now!! I can't understand how we need higher rate dla to get higher rate mobility, Grace can't walk for a normal 1-2 hour shopping trip and yet our mobility has been dropped to middle rate.

How do I make these fools understand for goodness sake?!

The Great Blue Badge Debate

2009-01-11T19:37:00.002Z

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

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

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

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

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

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

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

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

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

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

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

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

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

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

2009-01-08T13:47:00.002Z

Shelley have you seen this?

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

Newyear

2009-01-08T09:48:00.002Z

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

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

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

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

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

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

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

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

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

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

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

2008-12-10T19:46:00.002Z

Today I bought the Bumper Christmas edition of 'Thats Life' purely because Graces story of last Christmas was in there. I had numerous telephone interviews in which I spoke massively about CF and the plight of families and sufferers.

I then received another phone call in which they read the story to be printed back to me. I thought at the time - well it doesn't mention any of that, but atleast it is a plug for CF. So when I actually read it this evening and found that it had been altered somewhat since then too,some of it just made me laugh beyone belief. Do they really think that I know that little about CF that the Dr could fob me off with "she will really struggle to cough"? What a load of twaddle! Honestly I don't know why I bothered,they're clearly only interested in getting people to read their magazines and not highlight how pwcf suffer.

Well lesson learned......atleast we made £200 for charity.

If anyone wants to read it, its on page 11

2008-12-10T17:05:00.002Z

Looking back over the past few weeks, I have come to the conclusion that Grace has been to school for 6 days out of 5 weeks.

After she returned to school Tuesday (as Monday was too difficult) she started as she meant to go on and put her best foot forward etc..... and last night she was so exhausted that she felt physically sick, shakey and just couldn't move.

I phoned her nurse this morning just to pick her brains. The nurse felt that the combination of the cold weather, the busy time of year and just generally being the way she is with her 'funny episodes' was the factor. So with this in mind she has been told that she must do no after school activities and just have complete rest. I have pointed out that, generally she hasn't managed to do many of them for a couple of weeks anyway, and she is currently just finishing a week of 30 mg of prednisalone a day and is now on a week of 15mg. That doesn't seem to have helped.

So - sats 93, lung function 77% (probably best ever) and chest sounds clear, on her third week of cipro and 2nd week of booster steroids and nothing seems to be touching her and absolutely gets exhausted after just one day in school.

Bloods are going to be taken Friday to try and determine the cause, and if there is no improvement over the weekend, then they are going to try IV's (but for what?)

Earlier this month Graces blood sugars were monitored and were an unremarkable 4.2 after fasting and 6.2, 2 hours after a measured dose of lucozade.

If anyone is reading this information and feels they might know the cause, or if its just generally a Cf thing that we have to learn to manage then please feel free to comment. I am just so distraught that we can't get to the bottom of this and help Grace to just get through the week. I know she has CF, but at just 7 years old surely it shouldn't be this hard for her already?

We have bought a real Christmas tree and it has been in the house for 1 day, and she has complained a little of tightness in her chest, and hasn't complained before, I'm hoping its not the tree, but she doesn't normally have allergy related problems, and she hasn't complained today.

Just generally grasping at straws now as to what might be the problem, it might be that its something non CF related that has gone undetected, but what!!! Grace is so cross, that she has to stop dancing, piano, etc until the Newyear, just nativity rehearsals are allowed, but to be fair she has been missing lots of after school stuff too.

2008-12-05T10:12:00.002Z

I've been out for a run this morning, I have been out on the road a lot lately. I have been wearing supports to protect my knees and felt much better about the road, however, its starting to give me a problem with my heal. Is there no end to the amount of injuries I cause myself?

I decided to count up the things I have done in the past eight years and its quite a shock.

1. Broke the bone below my knee in 2001
2. Broke my toe and bone in the top of my foot in 2003 (on separate occasions)
3. Fractured my cheek bone on New years day 2004
4. Broke the bone in the top of my foot again last summer 2007

and numerous injuries to my knees in between, no wonder I have to work hard to keep fit.

Anyway my run went very well and I am going to stay overnight at a nice hotel tomorrow for my 'Christmas do'. There will be a tribute act, dinner and dancing into the small ours followed by a nice breakfast the following morning. My friend and I are checking in tomorrow lunch time so that we can take advantage of the sports facilities and a bit of pampering also, so I will be hitting the gym again.....I think it might be a guilt thing, trying to get as much exercise done as possible before all of the food that lies ahead at this time of year!

Grace has been a bit 'iffy' lately, she has had a few days off school here and there because she just can't muster up the effort some days, and I know its not because she is trying to pull the wool over my eyes because that is not Grace, she has gone to school today,but yesterday was hopeless, she planned to go, and then planned to go at 10.o'clock and then just did nothing all day.

She was at her clinic appointment on Tuesday and generally they were pleased with her. Sats were 93 (very good for Grace) and her lung functions was 77%, she has been on 12ml cipro bd for a week because her chest sounded seriously crackly last week, but she seemed to improve, the Dr's opted for a booster course of steroids over Iv's which are planned for the New year anyway, but since Tuesday her cough has loosened and she feels lethargic and breathless again, even though she has been on 30ml prednisalone for 3 days now, I know that cipro can probably make her feel rough, but you would think the amount of steroids she is on would make her bounce!

Yesterday we took her to Ikea and to a garden centre to look for a Christmas tree, we just thought she could do with the fresh air, but we also took her wheel chair as she was supposed to be resting and did't want to wear her out..... she enjoyed Ikea, we had lunch there and she picked out some new Christmas decorations and we bought a new bed (yay for my back!) and some gi-normous orange Christmas baubles. After that, we went to look for a tree, I have never had a real tree before, but, because of the new naughty Bitsycat, I thought something a bit spikey might deter her from attacking it, well she attacks everything else that - well come to think of it, doesn't move, move, breathe, anything really.

Also I have filled every available corner in our living room with furniture and there is only a corner near the door,so a tree that we could hack bits off to allow the door to shut sounded very appealing.

We have a very busy month ahead of us, with school plays and nativities and party's so it may be some time before I get to post again. I am going out for lunch today with my friend 'M' (my gym buddy) and meeting another friend for coffee and the ironing is staying at home by itself today. So I need to have a shower and eat my breakfast as my tummy is protesting with huge growls!!

Prayers being answered

2008-11-26T14:38:00.002Z

I would like to thank everyone who prayed for me..... I am going to see 'TAKE THAT'!

I read on the CF forum today of a couple that were having real financial difficulty. The husband has CF and has had a transplant, his wife is having to travel backwards and forwards quite some distance and has really put a strain on their finances.

The SOS is to try to find if they are entitled to any benefits,but someone has suggested setting up somewhere people can make a donation to a 'Transplant' fund to help them. I, for one, would be more than happy to make a donation, its supposed to be their first post transplant Christmas together,worrying about finances shouldn't be on the agenda.

Please give it some thought...............

2008-11-25T18:49:00.005Z

I love these quizzes and I (sadly) stole this from another blog that I am a follower of -

1. Wrapping paper or gift bags?
Wrapping paper, usually.

2. Real tree or Artificial?
Normally artifical but a real tree is on my mind this year

3. When do you put up the tree?
Second Sunday in December

4. When do you take the tree down?
There are 12 days of Christmas and I count 24th as day '1' so 4th January

5. Do you like eggnog?
Not really, its a bit sickly, but starbucks do a very nice eggnog latte

6. Favorite gift received as a child?
Unidraw girls and horses stencil set, I treasured it and I have searched the internet to try and get another but sadly its never come up on any search engine

7. Hardest person to buy for?
My stepson this year, he is nearly 13 so a little uninterested in adult stuff but to old for toys.

8. Easiest person to buy for?
Normally most people in my family

9. Do you have a nativity scene?
No

10. Mail or email Christmas cards?
Mail

11.Worst Christmas gift you ever received?
My ex-Motherinlaw once bought me a ceramic shoe ornament?

12. Favorite Christmas Movie?
I love all Christmas films, Its a wonderful life probably at the top, followed by Miracle on 34th street and The Grinch and Elf (love Elf, so funny) and Jingle all the way and Home alone 2 and I could go on for hours.............

13. When do you start shopping for Christmas?
Normally mid November but we always make a point of getting some gifts from the Disney shop in Birmingham in September when Grace has her BCH appointment.

14. Have you ever recycled a Christmas present?
Ermmmmm!

15. Favorite thing to eat at Christmas?
Hot Christmas pudding with freezing cold double cream, mince pies, christmas cake, sausage rolls and my Dads pickled onions

16. Lights on the tree?
Yes
17. Favorite Christmas song?
And so this is Christmas by John Lennon

18. Travel at Christmas or stay home?
Go to in-laws Christmas day but home for the rest

19. Can you name all of Santa's reindeer's?
Yup, Dasher, Dancer, Prancer, Vixen, Comet, Cupid, Donner, Blitzen. And Rudolph of course!(Thanks Becki lol!)

20. Angel on the tree top or a star?
Star
21. Open the presents Christmas Eve or morning?
Christmas morning

22. Most annoying thing about this time of the year?
When someone you least expect buys you a present and gives it to you on Christmas eve when all the shops are shut!! (go back to re-cycled present question)

23. Favorite ornament theme or color?
my husband likes silver, so, silver, but I do tend to add a different colour with it each year
24. Favorite for Christmas dinner?
Turkey crown

25. What do you want for Christmas this year?
Just a nice peacful, Healthy and quiet one with close friends and family

2008-11-25T17:36:00.002Z

Thought it was about time I did an update,so here goes......

I am still working and about to embark on my NVQ3, I thought it was going to be in January, but apparently not, I'm actually going to crack right on with it from this Thursday!....so I had better sharpen my pencil.

Grace has not been in school for a week as she felt very tired and lethargic and generally struggling to do much. A quick burst of anything really took its toll on her, an example she went to Marks Mums house for the afternoon, she went in the car and returned in the car, whilst there she amused herself on a Laptop whilst sitting down. When Mark drove her home she could barely stay awake and spent the rest of the evening on the sofa, she was virtually in tears going to a half hour piano lesson because it was just so tiring. No temperature or cough until Friday, and then just a cough getting looser as the weekend went on, so I decided to put her on augmentin until her port flush today when the nurse would check her over, she decided that we change the medicine to ciprofloxacin and in clinic next week if she hasn't improved, then IV's are planned for next Thursday even though they are not due until January.

Grace went back to school today, and it was a struggle, but she stuck it out bless her, but she seems to bearing up at the moment.

I need you to pray for me tomorrow!! Think of me at 9.00am whilst I am on line and on the phone trying to get 'TAKE THAT' tickets, infact you need to pray for me if I don't get them too!!

Going to a step into Christmas extravaganza at our local theatre on Thursday so hopefully that will put me in the mood.............

Post more when I have time.

2008-11-21T19:45:00.002Z

" Amazed " ( by you! ) - Lonestar

2008-11-16T10:57:00.002Z

We're back!

A busy couple of weeks has kept me away from the computer,also an Orange crash causing us to have to re-configure the router.

Updates -

Grace currently still well, but flagging a little. This morning we had to be at a dance Festival by 8.00am. My older girls were concerned that she wasn't her normal self, but bearing in mind that she had done a full dress rehearsal, with make up and hair done, plus physio and medication and nebuliser before she went on stage before 9.30, she was allowed to not be her 'normal self', I don't think any child that age would be in the greatest of spirit at that time.

We are going to Church on Sunday (next Sunday) now that all of the festival is dispensed with. Dilema though, friends would like us to join them at their church which we would like very much, but Graces friends are going to Sunday school at another (local) church and she wants to go with them. So what do I do? I will probably be taking Graces friends to Sunday school next week, but their parents want them to go local - so the dilema is apparent.

Yesterday we had complimentary tickets to a Coventry City home game. Although I really enjoyed it, they were absolutely attrocious, i've never seen such diabolical football, no wonder I don't follow them anymore, but still it was a nice afternoon out.

Last Saturday was Karl and Lauras wedding, (Marks youner brother) and we had a very long day followed by dance festival on Sunday....pictures to follow, although I took them all and there are none of me in my wedding outfit, but there are some of me later on in my evening outfit. Grace had a great time and danced into the early hours (no pacing) just outright over doing it, which meant that after the festival she had to have a day off school to recover.

I have so much to post and after being almost a week without the internet, i'm struggling to remember what it all is, so it will probably come in dribs and drabs over the next few days..............

Graces dance troupe won gold this morning by the way, out of a catagory of 13 other dance troupes and they were probably the youngest troupe also.

2008-10-23T22:56:00.002Z

Ok, this could be a litle in-coherant (sp?) as I have had a large baileys, a glass of very vinegary house red and one and a half g and t's. The one and a half g and t's is due to a win on the pub quiz,we won four pints or 8 halves, which we managed to wangle as a half of bitter, a g and t and a bag of nuts, of which my friend 'R' and I split the gin and tonic, good job because if I drank anything else..... I am struggling to spell presently.

Anyway, we won and thats all that counts.....

DEBATE

Ibuprofen-

Grace takes 10ml of ibuprofen bd. Since taking it she has been considerably well, but her steroids have been lowered and she has been trialling clarythromycin (contributaries to her wellness).

The ibruprofen was introduced due to her aching joints, but seems not to be able to manage without it.

Question

What are your opinions on long term ibuprofen?

Grace seems to be the best she has ever been whilst taking it, but generally there are concerns regarding bleeds and ulcers.

Opinions muchly appreciated

2008-10-21T21:52:00.002Z

To date, I have had orders for £45.00 worth of mini Christmas cakes and they're not even ready yet. (No I haven't forgotten you Shelley, yours is defintely on the list).

I have officially signed up today for the NVQ3 in Childcare so I am thinking I need to be getting my very deep thinking cap on.

Grace has been asked by her Piano Teacher to get the 'Preparation for Grade 1 book'

The cat has been very naughty today and generally being a nuisance. For instance, she went inside a cupboard in the kitchen which has a small opening at the back, which she somehow managed to squeeze through and spent an hour behind the plinth underneath the cupboards. We managed to coax her out with a piece of chicken without removing the plinth. She then decided to put her paw in my baileys and licked it clean and has been just attacking us all evening! Finally when I was emptiying the tumble dryer she kept steeling pants and socks and running off with them.

I am going to a pub quiz with friends on Thursday (really looking forward to that, I love quizzes of any description) and I have also been invited to a birthday party, but its a beach party so I need to fish out my sarong (no bikinis though, I don't think bikinis and tequila shots and limbo dancing really mix at my age).

Off to bed now, not much to update, but Grace is well, if a little tired and in need of half term, but we are just looking forward to doing stuff together. She has become a little in need of Mummys company this week, maybe its because I am working, but it seems mostly at bedtime when her mind wanders, but still its nice to feel wanted.................

Good night God Bless

2008-10-15T22:33:00.002Z

I've had a busy time since last blogging. I was invited to a birthday party last Friday, well actually Mark and I were invited but Mark had to attend a stag party on the same night so I decided that I would go alone as it was unmissable. Then Mark was commandeered to drive as he doesn't drink alcohol and I had to cadge a lift with some friends.

I am so glad that I did, the party was at an Arabian restaurant called 'Habibi'. I don't know if its a chain or just a one off restaurant in Coventry, but what a great place! We went through a small brown insignificant door to a building that I have probably passed lots of times and never acknowledged. From there we went through to the rear of the building into a Bedouin type tent with rugs on the floor and masses of material draped over the walls and from the ceiling. In the middle of the tent was huge sort of pit with a fire burning and on the tables were those peculiar hooka bong pipes, and after dinner many of the guests tried them out, they were generally herbal and one smelled strongly of apple, but I didn't have a go.

We had a selection of Arabian dishes and we had to take our own wine/beer etc, but it was just a fantastic time sitting on very low cushioned seating (except my knees didn't like it) and that was followed by baklava for dessert and a hot fruity tea served in teapots that looked like a genie might pop out if they were acidentally rubbed....... highly reccomended evenings entertainment.

I've been to a Childminder briefing this evening to get all the neccessary bumff to get me started on my training, and also to try and understand the 'ins' and 'outs' of Ofsted.

Grace went to clinic yesterday and they are still very pleased with her, she is due to finish IV's on Thursday.

I went for a run on Sunday and was very pleased with my progress, I am also going to the gym tomorrow morning whilst I have a spare half day.

I am selling diddy Xmas cakes again this year, but would like to spare a thought for a close friend who's very newly born Grandson died at just two days old last week, so the money raised this year will be going to 'Jimmys neonatal' in Leeds.

Muchly in need of some sleep now, it seems that these days I only get to blog very late at night.

Good night, God bless xx

2008-10-09T11:40:00.003Z

Apologies to start with! I've not had a chance to blog mainly because I am working now and also whenever I am home, Mark tends to be around and on the computer! Today he has an outdoor painting job so I've got rid of him!

I was supposed to be going to the gym this morning but whilst pulling Graces jumper down I managed to pull her line out so we had to wait for the nurse to come and re-access her port. She is on her planned monthly IV's but seems to be doing very well still at the moment.

Updates

I am currently training to be a Childminder so that I can work from home, earn money and still keep an eye on Grace and be around if needed. It takes a bit of time to to the training courses and have an assesment via OFSTED, but my neighbour has taken on twins under a year old and she cannot look after them without an assistant (me) so therefore i'm getting the training quite quickly.

Grace is in training for a dance festival in November and I am already sick of 'The Ugly Bug Ball' she's also in a dance trio so we need two costumes (money money).

I am going either to the gym or for a big run tomorrow as it has been very difficult for me to do it regularly lately. Last Sunday I got up early put my running shoes on (new ones might I add) and they must have had an amazing bouncy effect on me or something and I ran for miles! It was great, but sadly I haven't been able to get out since.

The cat is currently pushing it! How many times in a day is it usual to sweep up cat litter because the daft animal has dived in and dived out of it at 100 miles an hour in one of her crazy kitten modes? and she has now discovered that she can climb onto the breakfast bar whilst we are eating and its impossible for her to be in the room now whilst we are eating or she will just put her paws or her nose in everything, although I don't think she will put her paw in my cup of tea again.

This weekend the leopard print wellies are coming out of the shed and the garden is getting its winter overhaul (that doesn't look right sp?) and I have ordered reindeer food ready to start making up my supplies and I have already made 15 Christmas cakes! I so missed it last year, but what with the dodgey builders that didn't finish my kitchen in time and Graces extremely poor health, I just didn't feel like it. This year I think I might add some mini Christmas puds to my gift list.

Grace and I have decided to make it a very personal touch for Christmas this year and we are making everyone a personal gift and cards, obviously the cakes and puds are on our list, but knitted scarfs, slippers and teddies are another and jars of chutneys etc, but feel free to give us some more ideas if anyone out there has some.

I have another update that I can't actually update yet, but as soon as I can, I will, and its very exciting! For now though, some reminders from the summer holidays

Well the hoover beckons.................. and a Happy Birthday to you Shelley Boo!

I Defy you not to be cheered up by this!

2008-09-18T16:38:00.006Z

Grace said some children from year six sang this in their assembly last week and had no idea what it was. I showed her this on Youtube and since then we have sung it every morning whilst getting ready for school and even now I still can't stop laughing at it.

I have been making my first Christmas cakes today (last year went terribly down the pan due to Grace being so ill) but I'm back on target and up and running again now, obviously I sang manamana! the whole time I was making them, i'll be singing it in my sleep soon!

It really cheers you up.

Manamana

2008-09-18T16:38:00.003Z

Still no reply from 'Foot in mouth' interview, I think that speaks for itself really. Anyway, I officially start tomorrow as a 'Childminders mate' and looking forward to it greatly. well actually I went to my first Sure start meeting and got invited on the Christmas night out! What a socialite am I?.... we have booked into a hotel and we will be using all of the facilitities! (I know, but I've had wine) and then an evenings entertainment of dinner followed by tribute act (no idea which one) and disco.....time for sparkly shoes and then stay overnight followed by fat breakfast in the morning and home after that. Now thats what I call a Christmas night out.

Mark has got a few jobs this week, he has two painting and decorating jobs and he has to go to Emmaus tomorrow for a big gardening contract. Emmaus is local to us, its a place where the homeless can go and be fed and a bed in exchange for working. The job includes collecting and distributing of furniture from around the city. I do not know if its a national company, but it seems to work very well here..... and also their surrounding grounds are very over grown.

Mark has gone to do an extra filming thingy this evening, he has a part in a nativity film in Coventry city centre. Its a very warm evening and he has to wear a scarf and gloves.... but atleast he is off the computer and not in!!! (sorry about the exclamations, but its nice to be home alone).

Grace has gone to her friends for tea and won't be back until 6.30. Ridhi is her very good school friend and she has just moved into our street so its all very exiting. Health wise she is doing ok, flagging a little since being back at school, but we are hoping that she will over come this once settled into her routine. Breathing a little heavy again, but nothing major is bothering her. She is due in BCH clinic next Wednesday so we will see how well she is doing.

And Faye, well Faye is never in these days, i'm thinking of getting one of those pigeon whole thingys that they have in hotel lobbys for keys and post haha!

A blog that I follow regularly made me laugh greatly when the blogger accidentally phoned home from her mobile and thought she was getting a dodgy heavy breathing type phone call, it made me think back to a night out a few weeks ago where upon I was attempting to be 'all cool like' and managed to zip my chiffony top into my handbag and couldn't pay for my drinks for about 20 minutes whilst trying to pick myself out of it..........don't think I will be going to that establishment again.

I'm off to get another glass of wine now and make my cheeks warm and rosy because I haven't got to go out or be taxi to anyone this evening.

2008-09-15T11:00:00.002Z

I had an interview for a clerical position at the hospital on Friday. I originally applied for atleast 10 positions as a Healthcare assistant, basically a non-qualified nursing support. I just felt it was time for a change and quite fancied the challenge. I applied for a couple of clerical positions as well because thats what I have done all of my life.

This lead to Fridays interview for a support secretary. I've always like the job that I have done, but that kind of work always brings a lot of stress and hassle for very little money. I mean Aldi staff get £8.00 per hour for sitting on a checkout. So I fancied something different and interesting.

I have also looked into doing a childminding course so that I can earn money and be around for Grace too. Thats probably the least favourite of my options but the most sensible.

Anyway, being a bit rusty in the interview stakes, I decided to look on line at standard interview questions and answers and brush up on what was 'now'. I got together a highly polished package and was ready.............. until they started asking questions and my tongue developed a very dry thick coating (thick being the operative word) my brain emptied and I couldn't remember a thing..... I was grasping for words and eventually it was just a lot of babble.

I'd like to say that hopefully the interviewers were looking for 'babble' but to be honest my heart was just not in it and I didn't want to work there. Well, saying that, it would be nice to be back in work and amongst 'workers' but I know in my heart of hearts that I would be constantly worrying about Grace and worried that I won't be able to hold down the job if she's ill.

So I think that I have resigned myself to the fact that being a childminder is my best option.................. I'll write more on the subject when I know what I want to say next, but it has made feel much more relaxed than I have been knowing that I can earn and take care of Grace. Also, my neighbour who is already a childminder is going to employ me as her 'assistant' so that I can train quickly and she benefits from twins that she cannot care for on her own, so I may be up and running much quicker than I thought............. God certainly works in mysterious ways Suzie

I still haven't received any correspondance with regard to the Healthcare Assistant positions so I suppose thats a no go too?

Oh dear what can the matter be!

2008-09-11T20:48:00.003Z

Grace had to take a treasured posession to school today for R.E. I suggested she take in her acapella but she said "by no means do I treasure that thing"!

Instead she took in a bear that belonged to me, but I gave him to her to help her through difficult times because he is very old and qualified in sympathy.

His name is Poo and he is 44, a bit battered and a bit sewn up in places, due to an eye falling out and his arm being pulled off and once my niece vomited on him after eating a curly wurly (curly hurly more like) so he had to have a bit of a trip to the launderette.

Anyway Grace told me all about it when she got home, and told me in detail all of the things she told the class about the bear. I then asked about things that other children had taken in, and there were lots of bears and Grace was most impressed by her friend Charlie, she had brought in her HSM book and inside there was a song that she had written herself. Grace said she sung the song to the whole class! and she sang it beautifully and she had an amazing voice. Charlie has been separated from her Mummy recently because she has had to have an operation and had to stay quite a long way from home. I know that she will be home on Saturday, but I just wanted to say - I hope you have a speedy recovery and that you should be very proud of Charlie.

The other thing that Grace told me was that she got locked in the school toilet today and was there almost an hour before anyone noticed that she was missing from class. The teacher then had to stack things on a chair to climb up high enough to reach over the door to get it open. Poor Grace was shouting help for ages and she even tried to squeeze under the door! and unfortunately no one came to the toilet during her whole ordeal! Thank goodness for Vivienne whom eventually remembered Grace hadn't returned to class.

Back to School

2008-09-05T10:18:00.002Z

September already!

Grace has gone back to school, and Faye is.... well Faye, has a place at De Monfort University studying Contempory dance, she also has a place at stage school for 3 years with a teaching degree at the end.

We advised her to do the uni degree as its less money and a ucas loan, the stage school is very expensive and a student bank loan.

It turns out that with student accomodation in Leicester, the price of the loans work out about the same. She is desperate to go the stage school but will do the Contempory degree if we feel its a whole world of debt! She will be atleast 20 big ones in debt at the end! Do all students have this amount of debt? its really scary!

I am struggling to advise her as I didn't go to university and I know nothing about performing arts, but I know that she just adores theatre and jazz and white teeth and jazz hands type of stuff, so any suggestions would be most appreciated.

Grace is still well, although she is finding it a tad tough and got a little out of breath this morning whilst trying to hurry in the rain. I think at the moment that this is just an adjustment to a change in circumstances (going back to school and not laying around all day watching spongebob), however, time will tell.

Grace is due at BCH on 17 for an appointment with Dr W and also she is to do an exercise tolerance test, with the lung function people beforehand. This came about at the last appointment because at that time we took the wheelchair so that she could manage the whole day out. As she is much better presently I am just waiting for the smug physio to say 'I told you so', hence the test is probably a waste of time.

I have been to the gym this morning and they have new treadmills, at my usual speed and distance I thought I was going to kill myself! I did stick out however, and am totally exhausted now. The other machines were definitely worn out in comparison, so I might see some significant changes to my physique!

I have been applying for jobs and I have been looking into healthcare. I have applied for numerous positions, because its easy to do it on line, you just do one application and then copy and paste it to whatever job takes your fancy and then hit send. So far, I have been offered one interview but its for a support secretary, having been in admin all of my life, I don't know if I want to continue, its lots of hastle for not much money or job satisfaction. I am also looking into becoming a childminder, that way, I can earn money, stay home and keep an eye on Grace too! I just have to decide if I want lots of jammy finger prints all over my house again?

Kitty kat has settled in nicely and seems to be in love with Mark, she never moves from his side,(and he feeds her toast and slices of chicken sandwich meat for breakfast), she is currently stretched out fast asleep next to him. So I have been redundant in that department also, hopefully if she learns to make him a cup of tea and iron his shirts, I can have more time to myself.

Ironic

2008-08-19T13:54:00.002Z

After years and years of Grace plaguing for a pet, and the fact that Mark absolutely despises animals......... he eventually gave in, hence the little bundle below on a previous post.

Grace constantly used her CF as an angle to needing a pet,myself also.

Little pussy cat went to the vets today for her very first check up, and guess what??.... she's now on antibiotics for a respiratory infection, and of all the people in the house, Mark is the only one she will go to, it was so funny this morning watching him try to read the horse racing page whilst the cat was walking all over the paper..... cheered me up no end x

Pictures!

2008-08-18T13:17:00.004Z

Grace as a catterpillar in DR Doolittle and Bitsy Binx

2008-08-18T11:53:00.004Z

Wow! August already, doesn't time fly?

Well this is what we've been up to since I last blogged.......

We have been down to Devon for a week, to have a bit of a break and also to check out properties. From the properties that we saw, and also the fact that Faye is still undecisive about her further education at the moment, we have decided to put the move on hold for a bit longer.

Mark is no longer at the bookies, but work is a bit thin on the ground, and we are just hoping that it starts to come in as soon as his advertising goes into the yellow pages at the beginning of October. Currently he is distributing leaflets by the hundreds, but not a lot of work has come in yet. Still I have told him that when the children go back to school everyone wants painting and decorating done..... Its hard though..the waiting, he keeps thinking should I apply for a job or should I stick it out??

After a week in Devon we had a major hectic week with Grace in a 3 day show with nightly performances and a matinee. Rehearsals and photo shoots, costume fittings etc, you name it and we had done it in that week. Still it went really well and all of the proceeds went to purchasing equiptment for the oncology department at University hospital Coventry as 'Emily' a little girl in nursery ballet has been undergoing treatment, and had a kidney removed because of cancer.

We finished the show on Saturday evening and the following day we were off to Dorset for a week, and we had a thouroughly good time at both holidays! We were very lucky with the weather as its been dreadful since.

Grace must have thrived on her breaks as she had a glowing report from her consultant and he was very pleased with her, although I have currently changed her meds to augmentin this week as she was being troubled a little by a bit of a loose cough, but generally very well.

Two days ago we bought a little rescue kitten..... she's so cute, but she's not too good today, not eating or drinking and very sleepy, but hopefully she's just adjusting to the change, but she's going to the vets tomorrow for a full check up. We have been through a whole range of names...but we have finally settled on Bitsy-Binx, this is because after narrowing it down to two, Grace and Faye couldn't choose so now she has both of them.

I'll post some pictures shortly.......

I've not been around much generally due to the battle in my head with Mark having no work and being constantly scared, but i'm learning to see positives and I am working my way through it. I have applied for some jobs myself in Healthcare, but so far have had no repies, other than confirmation emails that the applications have been received..... still it gives me a chance to get the pusskins settled in, but I was really looking forward to getting involved in some training for a new job.

2008-07-07T10:00:00.002Z

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

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

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

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

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

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

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

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

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

2008-07-06T19:09:00.005Z

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

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

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

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

Coming together

2008-06-26T12:27:00.010Z

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

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

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

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

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

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

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

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

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

2008-06-23T09:05:00.002Z

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

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

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

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

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

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

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

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

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

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

2008-06-19T09:52:00.002Z

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

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

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

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

2008-06-18T09:55:00.002Z

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

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

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

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

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

2008-06-17T14:26:00.002Z

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

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

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

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

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

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

2008-06-13T09:36:00.003Z

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

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

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

2008-06-12T09:15:00.002Z

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

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

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

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

Regards MoO and Grace xx

First CF Rose

2008-06-10T11:46:00.005Z

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

2008-06-10T11:00:00.002Z

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

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

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

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

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

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

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

2008-06-04T21:20:00.002Z

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

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

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

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

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

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

2008-05-23T09:13:00.001Z

This is what I got when I put the word Wheelchair into the ebay search

2008-05-22T15:03:00.003Z

I'm back again, and I'm still miffed about the physio comments from Birmingham. So if I get it off my chest then maybe it will go away.

Firstly I just wished I'd said to the physio " Well doh! I didn't buy the wheel chair off ebay, we were referred by our own team" I wonder if you can buy wheelchairs on ebay? I mean, our team wouldn't refer her if they didn't think she was having trouble would they?

I feel, as the hypertonic has been scrapped as if other things could be scrapped, as I feel that dnase is a waste of time and no matter what Grace takes, nothing makes a change. I know that people will tell me that she could be far worse if she wasn't taking them, and I know its true, but sometimes I just feel like saying "right I'm not going back to that hospital and they can make their half yearly input from her notes made in Coventry" apart from Dr W who does see Grace in Coventry and keeps a close eye on her. It happened last time we were there, the Dr that saw her in October said it was more or less our fault that Grace was so unwell because we obviously must be missing treatments or not doing them correctly. Do they think if you have cf or carry the gene then obviously you must be thick?

I, of course, don't really mean any of these things, but just wonder if all we are doing should just be cut down a little to see if she is just the same without them, and maybe have more time on her hands than she does presently........ I still mean the stuff about the physio though! pah!

Thats better .........sigh.............

Gilly beans!

2008-05-22T12:28:00.004Z

When I was at school my nickname was Gillybean because of my passion for jelly beans.

Look what I found in Selfridges yesterday! It was available to buy for £20'000 and was made completely of jelly beans, it was the life size replica of the Bullring Bull. I just felt like picking one off!

BCH update

2008-05-22T11:27:00.002Z

Yesterday was Graces appointment at the above.

Firstly, we normally make a day of it and do the Bulllring and go to Wagamamas for lunch (Graces favourite). So anyone that knows Grace and knows how she has been doing lately will know that we needed to take the wheelchair (Dave) as she would not be able to manage a day out like that otherwise.

So when you are told by the physio that "we would normally like to advocate as much exercise as possible and using a wheelchair doesn't really help a child with cf" it makes you feel a little patronised to say the least. I then had to explain that we had been advised to stop extra activities presently as Grace was feeling the strain, and give her a big big rest. We also understand the implications of using a wheelchair and feel that out own team wouldn't have advised us to apply for it if they didn't think it was necessary at the time.

I went on to explain to Dr W that we use it prophylactically (if that's how its spelt) and that we knew that carrying Grace around Birmingham at 32.8k for the day was not an option. So does that mean she shouldn't have days out if she can't walk that far?

This information has led to an exercise tolerance test being taken. I informed them that Grace would push herself to the limit where exercise is concerned and doesn't know when to stop, but for the next few days it just takes her off her feet and she can do virtually nothing.

Here sats were 92 (excellent for Grace) and her chest was sounding clearer than 1 month ago, her lung function was marginally down on last month but not massively. They also gave her a big dose of salbutamol and re-tested her lung function, there was very little change, so they decided against serevent. Was very funny though, Grace really peculiar for about half an hour afterwards and couldn't stop shaking.

So generally she isn't bad, but her breathing difficulties are much more visible and Dr W remarked on it only minutes after Grace entered the room. She has been taking zirtek on and off for a few days because we thought she has hay fever, but as she is improving this week, I think that it may have been just a nasty bug that she had picked up. We actually decided to leave off the zirtek because we didn't want that to be used as a reason for her weary episodes (it would be easy to say that zirtek could make you drowsy).

So in my opinion, Grace appears to be quite well, but her heart races constantly to keep up with her breathlessness, she gets exhausted very easily even though we work tirelessly to promote exercise,(until this last week of course)she has a reasonably clear chest,but for some reason cannot manage to keep her breathing under control.

Dr W decided to keep the prednisalone at 7.5g per alternate days and is looking to bringing it down to 5g per alternate days in the near future. Also he was happy for Grace not to start IV's until 5 June as planned rather than bringing it forward because she had been unwell (that was pleasing for me) long term he is looking to extend her planned IV's to 4 monthlies instead of 3. She has now started clarythromycin and hopefully will be able to tolerate it. The hypertonic has been scrapped because 3 months down the line, we have noticed no difference for using it and her regime is such, that we were struggling to fit it all in, so at least she gets a little more time to herself.

So hopefully this little switch round will help her on the road to recovery....and the slight blip from the physio from the Ministry for the bl**din obvious hasn't 'p'd me off too much............. but generally, I haven't got a clue what else to do, why can she not get her breath if she is well? The lowered dose of steroids hasn't shown any weight loss to date, but quite a considerable bit of height has been gained, so I am looking forward to seeing a balance there in the future that may help with her breathing, but I don't really think that her weight is behind her breathing difficulties.

Long old blog today............so I'll go now before I start posing myself more questions, apart from mentioning that he BCH team didn't feel that we needed to be contacting Brompton just at the present time.

2008-05-17T16:50:00.003Z

Grace saw the nurse Thursday as she has been unwell again this week. Due to some questions on a previous post as to the cause, the nurse felt we should raise them at BCH on Wednesday. She also told us to ask if it was possible to be referred to see Professor Andrew Bush at the Royal Brompton feeling that a fresh approach from someone that hadn't seen Graces history may well pin point something that could help.

I don't know if this is because Mark is always baffled and searching for answers, or maybe they think that we are thinking they haven't done enough. I don't know. I have never thought the latter as they have worked tirelessly to help Grace, but she just doesn't seem to improve no matter what and they can only hope that she will plateaux soon.

I too feel this, and I know that they may never find any answers, but to just go along with Graces health problems and just manage them as best we can.

It could be just the lowered dose of steroids and they need a chance to let her body adjust to that or it could be a coincidental bug she's picked up at an unfortunate time......... but is it worth going to London to pester a such a specialist to find out no more than we know already?

We have worked hard to give Grace exercise, for example trampolining, swimming etc, but this week the nurse suggested that we just knock it all on the head for a bit and just give her a rest because it might be having a detrimental effect presently............the poor girlie is struggling to do anything at the minute, shoes and socks are an issue!

2008-05-16T18:21:00.002Z

This has to be the coolest advert ever

2008-05-15T09:10:00.002Z

Yesterday was a mad day. Grace finishes school at 12.15 on Wednesdays and she certainly needed to this week. Sometimes we take home a bit of home work and sometimes she just rests (easier said than done trying to make Grace remain seated).

We decided to sing some show tunes to entertain ourselves and it resulted in us printing the lyrics for lots of songs off the internet. We got awfully carried away and now we know all of the words to 'Don't rain on my parade' and a very sore throats from screaming it out all afternoon.

As Grace has not been too good lately I have been sleeping with her at night, which has resulted in me being very zombie like. This, coupled with going a bit beserk at the gym lately resulted in me zonking out totally on the sofa all night so yesterday we did nothing but sing.

In the evening I had my first piano lesson! It went quite well, but I feel a bit strange learning from a childrens book, but its worth it to be able to tick it off my '10 things to do before I die' list.

Grace is not at school today as she is unwell, generally lethargic and aching joints again. Last night she said she felt so poorly it made her want to cry. She has felt like this at some stage of every day and I am wondering if its connected to the lowered dose of steroids. She is going to begin clarythromycin today, but I will phone her nurse just the same to log the way she has been feeling even though she is due at BCH next Wednesday. She has had her fair share of illness this last year, but I don't think I have ever seen her this bad.

I have been following this blog along with countless others, it really is an amazing story, so I have decided to add a link just because I know how to do it now............. I will be doing montages and stuff before you know it. Take a look, its awe inspiring, what a lovely family

http://www.cfhusband.blogspot.com/

2008-05-12T16:38:00.002Z

http://www.youtube.com/watch?v=Nz33i6prkuQ

Since this was made Emily has had her transplant, but it has been obvious this week that so many people die waiting..............................

BECOME AN ORGAN DONOR TODAY - CLICK ON THE LINK BELOW

2008-05-12T16:16:00.002Z

I took Grace to the Dr's this week for a normal ailment, or so I thought. She had sneezed and sneezed for 3 days straight and her eyes were extremely red. She didn't appear to be unwell other than her normal exhaustion episodes, so I presumed that it is hayfever.

The Dr asked if she had been unwell or had a temperature, I said no, but Grace never gets temperatures really above 37.4 which I would consider to be high as she normally averages around 35.4. He also listened to her chest and got quite concerned but I told him that she always has crackles on the bottom left hand side, so he prescribed zirtek.

Grace has taken zirtek for 3 days and the sneezing has slowed up, but has been replaced by really thick green mucous, which then leads me to believe that it may not be hayfever after all. She is currently on cipro and is due to finish it Tuesday when she commences a trial of clarythromycin as a prophelactic.

We have upped her salt intake over the last week obviously, but she is very exhausted and breathless and now the aching to her ankles and wrists and often lower back have been dreadful to the point that she struggles to a standing position when she has been sitting for any length of time.

Questions:

1. Have these symptoms arrived because of the lowered dose of prednisalone.
2. Is it just hayfever or is it indeed an infection
3. Is it maybe just the hot weather and a combination of the three
4. Should I now leave off the zirtek
5. Should I just put her in the bin

There have also been symptoms of dizziness and headache, but that could be because she doesn't drink enough water, which, she tells me she trys and she is laughing as she says it.

We have had a b.b.q everyday since last Monday, I've never had such and empty freezer. Its nice to have such weather for a change.

The CF community has taken quite a blow these last few weeks and I would like to take time to remember all those who have lost their battle lately. If you haven't already become a donor, then please take time to do so http://www.livelifethengivelife.co.uk/

Thank you

2008-05-06T10:59:00.002Z

I have been to the gym this morning. I did around 28 minutes running on the treadmill. I have started 'upping' my speeds and was running at quite a steep gradient at 9kph! This was followed by a 12 stint on the cross trainer. If you put it on random and then a very high level, its really hard work and I burned off (not that I normally take any notice) 145 calories in just 12 minutes!

After that I did my new found passion..... cycling, I cycled 10k today without even leaving the gym and I am fast considering buying a bike. I just love making the target more and more difficult. I found out from the machine itself, that I should keep my heart rate at 141 to 144 for my age, so I do a 5 minute cardio work out at that rate and then I set to 'road mode' and off I go.... but my heart rate does tend fly past that because I get over excited.

So thats my gym update done. Someone asked me if I was still going, so this it to just let everyone know that I am...................

2008-05-02T11:26:00.002Z

This is the news paper report of the armed robbery

It reads absolutely terrifying! Hopefully I have done it properly.

2008-04-30T11:34:00.004Z

What is this country coming to?

Yesterday I went to visit 'M' after the gym, she didn't join me as she was feeling a little under the weather and its her birthday today.

Whilst I was there, her son phoned from school to say that someone had threatened to beat him up afterschool and was then told that his cousins, brothers and relatives generally, had be phoned to join him. They had also found out that he was planning on going home early and that the teacher had given him permission to leave immediately to avoid the issue.

We had to drive into school to get him, and whilst waiting for the automatic doors to open, saw a car full of youths brandishing base ball bats and big metal bars - right outside the school gates!! We had to drive back out with him lying on the floor of the car so that if they saw us again, then they wouldn't follow us home.

I know it was outside of the school grounds but surely the school could have phoned the police? This is a much sort after school in our city and people pay ridiculous house prices to live in the catchment area.

I was most shocked and when I got home, I was nicely calmed down by taking Grace for her first piano lesson which she thouroughly enjoyed and it didn't make her get out of breath once.

Later that evening a member of Marks staff phoned to say that he had been held a knife point whilst armed robbers stole the days takings after kicking the door in whilst he was cashing up.

I hate this country, theres nothing great about it. Maybe we will move in the next few years, there are too many ties presently, but this city does nothing to impress me presently.

I have been thinking about my list Suzie and I haven't made it anywhere near 10 yet, but here are a few to be going on with-

1. Learn to play the piano - (Grace and I have just started piano lessons)
2. I would also like to go to Rome ( I have been to Barcelona recently and I have
one Newyork too)
3. I would like to do a degree
4. I would like to do atleast a half marathon
5. Live by the sea
6.
7.
8.
9.
10.

Grace would like to -
1. Learn to play the piano
2. Go to China, Japan or Thailand
3. Become a scientist
4.
5.
6.
7.
8.
9.
10.

Clearly we are still working on it......

2008-04-24T13:18:00.002Z

Clinic this week!

It was nice to see Dr Weller, he attends our clinic about twice a year, and its very nice to get his input. We will be seeing him at BCH next month anyway, it should be the annual review but for Grace its the half yearly review as she is seen twice a year at Birmingham.

Firstly, her sats were 92 even though she is full of the cold, her chest sounded much the same as normal which is clearish with a bit of crackling on the left lower back. Her lung function was around 75% that would indicate that she has finally 'clicked' and now knows how to get the best from a lung function test. The thing that baffles me though is, with all the above info, her breathing is terrible, she can't walk up a flight of stairs at home without having to sit down and get her breath back and her heart is always racing, even when it was checked at rest. On Thursday whilst sitting down and had been for 2 hours, her heart was racing.

This was all obviously discussed at clinic and I have been pushing for some time for them to cut her prednisalone as her weight has gone up dramatically since her bronchoscopy, she now weighs 32.7 and is in age 10 clothes to accomodate her poor tummy which constantly bloated. So the extra weight could contribute to the breathlessness. The double dose of gastro was discussed but no indication of an xray, although I did say that she was having more abnormal stool problems than blockages presently.

All in all they were quite pleased with her clear chest and her sats being up, and they have decided to cut her prednisalone to 7.5g from 10 every other day to see if it will help with her weight with a view to reviewing it in Birmingham next month just to make sure she can cope with the lowered dose and also Dr Weller said he had had some experience of Graces 'funny episodes' being due to the steroids suppressing the adrenal gland or something like that which seems to fit 'the bill' perfectly.

Anyway she is still not back in school due to her stinky cold, but she will definitely be going back Monday and I can have a lie down for a few days. Well I'm off to get a makeover a la Grace now, ooh I can see the blue eyeshadow from here...........

2008-04-21T12:45:00.002Z

I haven't been to the gym since last Tuesday. I had planned to go Thursday, but felt unwell. I then planned to go Friday, but Grace felt unwell. Saturday and Sunday are virtually impossible and Grace is unwell again today. She is due in clinic tomorrow and Mark has the day off, so I will try and go early in the morning.

The nurse came out to see Grace on Thursday evening as she had a funny turn and called me to help her to where I found her lying on the floor in the bedroom and she was asking me to help her undress as she was too exhausted to get up.

I immediately checked her blood sugars and the reading was 9.1. She has had some diverse readings since we started, but I had no idea what they meant as we were only asked to record them until the next clinic.

I expressed this plus concern about her condition to the nurse and she came out to see her immediately. The nurse felt it had nothing to do with her blood sugars judging by the readings, but felt she might have something 'brewing'. Well I knew that anyway because she is struggling to breathe again. However, her sats were 94 which is strange because of the breathing difficulties and also because Graces sats are normally pretty low.

We mentioned the tummy troubles she had been having lately and was asked to do a double dose of gastro on Friday and Saturday (poor Grace) poor Grace indeed!! she asked if I would buy her a gift if she drank the gastro neat, and, knowing how much it disgusts her to take it in 200ml of coke, agreed.

So 50ml of neat gastrografin and £33 later, Grace is now the proud owner of a a 'b-chic' vanity case. I was robbed I tell you!...............

We have also had to keep a food diary since then to take to clinic with us tomorrow, so hopefully armed with all those things, and not having to wait another month until clinic, we might be able to get to the bottom of things. Dr Weller will also be present at clinic tomorrow and Grace is also going to have an xray on the offending tummy area.

As I have been keeping a close eye on a very good friends ' list of things to do before I die' I have managed one of them for her...... yes Suzie, I did the oyster and it was surprisingly alright and I could probably manage it again if you want to do a joint one. I have also decided to compile a list of my own, which I will give some thought, but I think one of them would be to audition for 'Britains got talent' because judging by some of the entrants, I stand quite a good chance of getting televised on the next series. I consider the Hydroactive challenge to have been one of my list already because I am incredibly impressed with myself with how fit I am for my age.

Well, house work beckons................................

2008-04-09T09:18:00.002Z

Yesterday I went to the gym. I was supposed to meeting 'M' but she wasn't there. So, left to my own devices I went a bit beserk. I did only 25 minutes on the treadmill, well 32 including warm up and cool down, but I upped my speed considerably. After that I took the opportunity to use the cross trainer for 15 minutes and worked my way up to level 10.

Whilst on the cross trainer I watched another gym member try out the new exercise bikes, they are quite tall and look like racers (I have a bit of a thing for racers and have been trying to get one at a reasonable price, because these days they are extortionate!) it looked really interesting so I just had to give them a go..... and I loved it and couldn't bring myself to stop. I started at level 2 and just kept going up and up and up..... and stopped at level 10 because I thought of the serious after effects that I might encounter today, and sure enough I am struggling to sit down, my legs are stiff beyond belief, but I feel great.

Tommorow, as 'M' won't be there until Friday, I decided I might try one of the classes, and I've decided to try the 'body pump' class, its sort of like exercising to music using light weights. Whilst Grace was having her swimming lesson on Monday I was talking to one of the 'Mums' who said that it was effective very quickly, and she could see toned results much faster than cardio, and the weights are quite light so there wasn't a big amount of effort involved......So watch this space for 'super woman'

On the subject of Graces swimming lesson, I made a complaint on Friday as whilst I was swimming I noticed that the mats that are designed to stop people slipping around the pool edge absolutely stunk! you could smell them from atleast 3 feet away. I explained that it is dangerous for childrens chests because of the bacteria, and can cause serious infection to any children, let alone children with such problems as Grace.

When she went for her lesson Monday, there was no change and the swimming instructor kept the class at the other end of the pool and well away from them, she also mentioned she had had a bad chest since she started working there and couldn't seem to shake it off. There is also a little girl in Graces class with chronic asthma.

I again complained and they said they would phone me to let me know when the problem had been rectified. They smell because they haven't been lifted and cleaned the whole area needs washing down with disinfectant and the mats need to be scrubbed with a brush, now as I pay £12 per month for Graces membership and that is beside the swimming class charges, I'm sure they could manage to pay someone a bit of over time to clean the mats. Anyway if its not rectified by the end of the week I will cancel her membership and stop her from doing something she absolutely loves because people just can't be bothered.

Grace finishes half day today, and she definitely needs it, she was very tired this morning and she has been coping ok for the last few days, but it seems to have caught up with her and is in desparate need of a rest, so hopefully she will take heed and sit around and do nothing this afternoon, easier said than done with Grace, funny though, the other 2 of my children could manage it with ease, especially when you struggling down the loft stairs with a dustbin bag full of mega bloks and the bag splits!

2008-03-31T11:24:00.006Z

Thought it was about time I did an update......

We went to Barcelona for a few days over Easter. The reason we originally went was because our friends daughter was in a European dance festival. However, they couldn't tell us where their accomodation was until two days before we left and we decided to just arrange our own and make our own way to the dance festival.

We met with them at the airport only to find out that they were based in Lloret de mar, thankfully we had booked a lovely hotel near the Marina in Barcelona itself (I went to Lloret when i was a teenager and it nearly put me off Spain for life).

We had already planned to take Adam to the Barcelona football ground as he is an avid fan of Thierry Henry and it was his birthday whilst we were away (Adams not Thierrys... well it could have been, I don't know).

Our hotel was really nice and we looked right over the marina and was above a whole bunch of seafood restaurants. We got a train and a taxi from the airport and it was very easy to get to our destination.

We visited an aquarium, did some shopping, ate out loads, went to the football ground, did an open top bus journey, went on a cable car, drank coffee in Las Ramblas (a bit like our Covent garden) and went to Hard Rock Cafe for dinner. We had so much shell fish that I think there might be a shortage for this summers tourists. It wasn't wonderfully warm, we needed coats, but it was much nicer than being at home.

Grace had a great time,she found it very tiring and we haven't done much this week at her request. Yesterday we did a bm test as she was a bit lethargic after going for a walk with her brother and sisters at Coombe Abbey (a local beauty spot) it was 6.00pm she hadn't eaten since 2.30 and we thought we should do the test before she ate. It read 6.1, I presuming that that was ok, I can't quite remember, but we logged it anyway with the reason for testing. She has quite a dirty cough at the moment, which is unusual for Grace, coughing is something that is not high on her list of problems, but the breathlesness is slowly sneaking back in. I am wondering how long it will take her lungs to get back to the state they were in before her bronchoscopy.

I haven't been to the gym for a week, but I am going tomorrow morning and really looking forward to it, especially a swim.

As for the dance festival, they did really well and won some cups and medals. Shame we didn't get to see any of it, but we had a great time all the same.

I will put some photos of Barcelona on the blog, but they are from my phone as I forgot the camera.

2008-03-17T17:16:00.003Z

I've been to the gym this morning. I ran about 4.5k and then did some other stuff- tummy work and leg work. Apparently I should have kept running and ran away......

I've got a really stressful headache now and my eyes are stinging, and all because of children.... one of them falls out with boyfriends, has shouting matches on the phone when everyone is in bed, works all week to earn money to pay for a trip next month only to put it in the bank and still be £20 over drawn, the other bullies the life out of another one and they can't be trusted to be left alone in a room together, one of them gets into trouble for saying the 'f' word in school because they were reciting something from South Park that they had heard from an older ones mobile phone.......

Where do I go wrong? I try hard to be reasonable in my explanations and when I have to repeat myself for the same thing over and over, so that I am realised by my family as a sensible parent that sees both sides of every situation, but they don't seem to take any notice until I SHOUT!!! until then my parenting skills are classed as 'a pushover'............. so I'm going up to bed now with a big fat bar of chocolate, a book and a nice cup of tea and they can all get arrested or something.

2008-03-14T13:07:00.002Z

Grace finished IV's yesterday. Its been a bit of a week, and she only managed to do Tuesday at school.

Monday was rough, we went horse racing at Warwick on Sunday and Grace ran about all day, its nice to see her running around and climbing on things, but I knew that she would wear herself out, and true to form on Monday morning I couldn't get her out of bed and she was very teary. She returned to school Tuesday, but her teacher said that she had a few grey episodes throughout the day.

On Tuesday evening we had tummy upsets again and she was very teary saying that she was just so exhausted she couldn't believe it. I have since read a thread on the CF forum that meropenum has caused others the same problem. Also the fact that her dose has gone up probably adds to the effect. So there has been no school Wednesday and Thursday morning when her port access was removed, she got into a terrible state as pressure sore had developed without us noticing and it was positively scabbed over the white plasticky square bit that holds the needle in place and she ensured me that it had positively ripped out her insides along with the needle, resulting in a very funny turn and another grey episode and lots of tears.

Today we thought, what the hell, lets make a whole week of it and do gastrografin today as its been due so that she can hopefully return to school on Monday ready for the week and not having anything else to upset her. Grace is not normally like this by any means so I don't think there has been any shirking involved even though she doesn't tend to complain about anything for the rest of the day, but she is then able to just sit around and do nothing much. I suppose it is different if you have to physically force yourself to join in school activities if you feel like crap!

I'v had a little flutter this week as it has been the Cheltenham festival and had 3 winners so far, although not great prices, infact I did better on an each way 2nd called Miko de Beauchene. I have also picked a horse in every race with a stake of £20 and the winner over the entire festival wins the prize money which stands at £140

A win secures 10 points and 2nd 6 points and 3rd 3 points - I currently have 38 points and am in 3rd place, my husband is in first place obviously.

I was meant to start Salsa classes last Monday, but being the busy week that it has been and also having another lodger back at home, I completely forgot, and the very nice people at the local sports centre have agreed to let us start this Monday, so watch this space.

On the subject of hectic weeks. The instruction manual to the eflow reccommends that the 'head' be boiled after each use, Grace has 5 nebulisers a day, she has Dnase at 4.oopm which isn't a problem because thats a once a day dose and can only be used for dnase (some enzyme type reason thingy) but the hypertonic and tobi are done through the same head. This means that it needs to be washed and boiled before and after physio and its meant to have 4 hours drying time.

4.00pm - dnase
6.00pm - hypertonic saline
7.00pm - toby

Followed by washing and boiling again to get it dry in time to take up to bed with us ready for hypertonic at 7.00am and toby at 8.00 am before school.

My point is, is this total rubbish? or does everyone do this between nebs? I feel like i'm forever putting things in and taking them out of a saucepan. I'm going to buy a steam sterilizer but I still think there is an issue with the drying times.

2008-03-05T13:06:00.002Z

Grace is a week into her IV's, she is doing fine and her clinic appointment was good. Her lung functions was 63%, so not bad, not as good as last time, but still not bad. Her overnight saturations were again border line, but as she seems to be doing quite well presently, overnight oxygen will be reviewed in 6 months time.

I got carried away on Monday morning and forgot to stop running on the treadmill and kept going for an hour in which time I did 7.4k! and only stopped then because I needed a wee.

I'm not going to the gym now until Friday to give my poor old fatigued legs a rest and also because I have so many other things to do this week that I can't fit it in.

Small update I know, but sadly ironing, housework and general laundry and gardening don't make for interesting reading, except for maybe the leopard print wellies I got for Mothers day!! (How about that welly fettish friend?) if you play your cards right I might put photos of myself wearing them in the garden.

2008-02-27T12:35:00.002Z

Grace going on IV's tomorrow. She hasn't particularly been unwell, its now just routine every 3 months regardless of how she is.

Monday night she awoke at 3.00am with terrible tummy pain and then was sick a few times, very little amounts, but quite clearly the pain was causing her to be sick. The following morning I gave her two big doses of lactulose (although she does have it every day) I have been told that I can give her 30ml in a day if she is struggling.

It seems to have worked and I don't know if we need to do gastrografin just yet, but I think we will have to do it in a week or so. Her tummy was huge during the day on Monday so I sort of expected it. Poor thing has so much to contend with all of the time and the only thing she was concerned about was missing her school trip to the Space Centre today. She has gone on the trip so I hope she is OK, but I don't think wild horses could have kept her away.

So IV's tomorrow, and she has done overnight sats tests twice this week. The first one wouldn't down load correctly and kept saying her sats were below 80 so we had to do it again Sunday night. The damn thing alarmed all night and the nurse said it must be because they are going below 80. I thought not, they were quite low when I checked, hovering between 89 and 93 and on occasions pushing up to 96,but every time the alarm had gone off and I went to check, they were over 90, but she had been woken up every time by the beeping.

We haven't been told what happened with this reading, but as we are seeing the nurse in the morning for port access I expect she will tell us then.

Generally though Grace has been having a better few weeks, even coping better at school, although she is snacking through the roof! and it shows, she has outgrown every thing she has, her tummy is better today but it has been bloated and her face looks like a little hamster (or a big hamster) but she seems ok, if anything a little more teary than normal, but coping with stuff.

I have been to the gym this morning for the first time this week due to lack of sleep for a couple of nights with the sats monitor and Grace being poorly (why do children always get unwell during the early hours?) so it has taken me until now to pull myself together. We also have had a bit of a family crisis, of which I can't discuss and am sworn to secrecy,because its not my secret, but that has been very upsetting too (the crisis, not trying to keep a secret... oh well that's true too)

I am syking myself up for a road run on Friday or Saturday morning because there is just absolutely no chance I can get to the gym again before next Tuesday and I can't swim either presently. We got all exited and about going swimming on Sunday with a friend and then remembered its IV time :( So a road run seems very likely.

Quick blog

2008-02-18T11:38:00.002Z

Just a quick blog to say that we are still around.

Its the first day back at school after half term and we have been so busy that I haven't had time to blog.

During the week we have been bike riding, we have been to the cinema, swimming and to a ball area.

Grace decided to buy herself a bike so we have been practising as often as possible and hopefully she will be able to ride in a few more days, without stablisers. With this in mind we have been taking advantage of the nice weather and getting outside as much as possible, we have even been able to clean down the trampoline and use it.

This came about because we felt that Grace doesn't get the exercise that we think that she needs during the winter months and maybe it will help boost her lung function and her general well being, and also because since her bronchoscopy, although her steroid intake has remained the same, she seems to have suddenly regained her appetite massively and has grown considerably.

Grace is doing another overnight saturation test tomorrow night and she will be starting her regularly 3 monthly IV's on 28 Feb (they are actually about a week early but we will be going away for Easter weekend).

I went out with some friends on Friday for dinner and after a few glasses of wine, managed to rope myself into salsa lessons. I am aprehensive, but quite looking forward to it, it was sort of taking a leaf out of the book of a very good belly dancing friend,whom I know finds this kind of thing very good therapy...... so lets see.

Not managed to get to the gym one single day in the last week, so I will be back with a vengeance tomorrow! can't wait.

The Teddybears Picnic

2008-02-04T09:42:00.000Z

Grace had a rubbish 2007, she had been ill for most of it,and in and out of hospital culminating in needing a wheel chair already at just 7 years old.

We wondered what we could do to as a nice surprise because of everything she had endured without complaint.

It was her birthday yesterday and this is what we did-

We had a teddybears picnic. We had to go to the Build a bear workshop to get the necessary bears for the picnic and as the nearest workshop is in Solihull (which is half an hours drive away) we decided to hire a limo.

What a fantastic time Grace and five of her friends had choosing bears and accessories, they even got to stuff the bears themselves.

We returned home in the limo and had the picnic sitting on the kitchen floor on a picnic blanket followed by birthday cake.

Grace said it was the best birthday she had ever had...... but it is only what she deserves..... and still not enough in my opinion.

Pictures to follow-

Disabled badges

2008-02-01T15:02:00.000Z

We have recently applied for the mobility component of the Disability Living Allowance, not because we feel we need this benefit, but because if you do not have it then you do not qualify for a disabled badge.

Grace has a wheel chair when we go out now, but we put on the application form that sometimes she can walk 50-100 metres and sometimes she can't, and on the days where she has walked the distance she can be totally exhausted and have to rest for hours afterwards.

The distance that she can do on 'good' days means that she doesn't qualify for any form of mobility allowance even though she qualified for the wheelchair and got it within one month of the request.

I really don't feel that we need the benefit and would rather it went to someone who would, but we could really do with a disabled badge and also, I can't understand that someone who knows nothing of this illness can decide who gets it and who doesn't? and why are the two connected?

All we want is to park a little nearer our destination and ease to get a wheelchair in and out of the car so that Grace doesn't get run over whilst trying to get into it.

Since having the chair she hasn't cried on her way to school because she is panicking that she can't get her breath and she doesn't want to be late, and its only across the road, its a little up hill and thats very uncomfortable for her, so how on earth would anyone consider that she doesn't qualify?

I wish I could emigrate, what a bloody stupid country........... not just because of the badge, but a whole lot of other things which make me less than patriotic now, things like people getting beaten to death in the street and then getting away with it, and people claiming for injuries and just the horrible state things are coming to and its just accepted, and meanwhile I feel like a criminal for daring to apply for a disabled badge!!!!

2008-01-25T14:45:00.000Z

What is it with gadgets? I've been off line for over a week, a man had to take away our computer and take everything off, restore it to factory settings, put it all back together and charge us £125! It seems it was virused beyond belief, even though we have anti virus protection and firewalls and all that stuff.

So now we have it back with AVG and Firewalls and all that stuff and I'm assured that it won't happen again..... hmmm!

Adding to the gadget thingy, we have had a connection between the new tv in the kitchen and the one in the bedroom which has sky multi rooms, only its never worked properly and I have complained to sky on more than one occasion and they have replaced the box - twice and told me to buy a new skart lead (?) and they have just replaced the box again. Fine, well not really, then it messed up the remote eye and that had to be redone, fine, well now the sky is not working any better than it did originally. I keep telling them its not the box, it must be the cable, they should pay me to solve their problems.........

Grace went to clinic on Tuesday of last week. She was a little under the weather with a cold, but apart from a bit of a temperature and horrendous conjunctivitis, she has managed to battle through it. Her sats were 92, and her lung function has gone from 45% to 78%. I can't tell you the relief that we saw on the Dr's face. He is happy that she has stablised at her last two visits and hopes that it will continue. Funny turns still happen from time to time and we are supposed to be checking her BM levels, but so far i've messed it up every time.....back to gadgets again, but the one time I was ready..... Grace ate a pear whilst I was doing the prep grrrr!

We haven't been out much this week, although we did go horse racing yesterday to Warwick, we still don't have a disabled badge which meant we had to wheel the wheelchair across the race track (car park and entrance are on opposite sides) very humorous, Marks brother was shouting "3-1 the field!" and trying to take bets on Grace.

Obviously conjunctivitis being as infectious as it is, she hasn't been to school all week and yesterday was her first day out, and her eyes were much better. This morning they were back to gunky city again so hopefully I can get it cleared up over the weekend in time for school.

She is having a teddy bears picnic for her birthday. This entails taking 6 children to Build-a-bear workshop, choosing and stuffing and dressing bears, and returning home to sit on a blanket in the kitchen and having a picnic with them, whilst Mummies have a glass of sparkly and some nibbles! We found the prospect of splitting them up into two cars a bit daunting as the B.B workshop is a half an hour drive away.......................... so we hired a limo and we get free fizzy pop!

I must be crazy, or lovely, one of the two?

New year, new start

2008-01-11T10:08:00.000Z

There have been some major changes in our household and the New year sees some of them put into effect almost immediately.

Firstly 'Dave' the wheel chair. So far we don't know if this has made much of an impact on Grace as we haven't really been anywhere of great distance, but the short very uphill journey to school in the mornings has been far less stressful. The first day back to school was a little scary for Grace, she was very self concious of being in a wheel chair, she kept saying "what if everyone keeps asking me why am I in a wheel chair and don't have a broken leg?" I told her to tell them that she had broken lungs and it made her laugh even though her legs were visibly shaking on the way because she was so nervous.

As the days have gone on she has become less worried by the whole situation.

Mark is hoping to make a career move early this year so lots of new territory to cover. I am nervous but hopefully things will be good.

Grace is due in clinic on Tuesday, she is a little off colour, but nothing major. the course of cipro finished Tuesday and she has gone back to azithromycin. The tummy pain has started all ready so I know that it coincides with azithro as she hasn't complained at all over christmas about tummy pain.

Getting Grace back to a early bed time routine has proved very difficult. She hates to be alone with her thoughts and gets upset and crys when left by herself. We have put some credit on her phone and told her to text us from upstairs if she is concerned about anything in particular, so she does, regularly, mostly to say she is feeling rather unwell and it would help if she could come downstairs to take her mind off things or could someone go up and lye with her.

As part of her Make-a-wish request Grace was asked if she could be anything what would she be? Her reply was - to be a spy, and she is certainly obsessive about spies and spy gadgets...............

Some more spywear for Christmas to add to her collection...................

What a crazy month

2008-01-07T10:20:00.000Z

In the last month we have crammed in so much stuff that I am struggling to remember what we did.

It started with the Christmas Pantomime only days before we drove to Manchester and spent the day at the Trafford Centre before going to our hotel where we stayed over night so that we were ready to fly off to Lapland the following morning.

Lapland was the most incredible place I have ever been and found myself wishing I could have stayed for the whole of Christmas. Lots of factors caused me to lose a vast amount of weight - oxygen problems, and illness for the Grace and Mark and Adam getting into trouble in school. this all made feel that if the airline said "Sorry you can't fly" on arrival I would have gladly said "ok" and gone home. I am so glad that it never happened and that I discovered what an amazing place it is.

The scenery is breath taking and beautiful, you just have so much fun falling about in the snow and it wears you out so much just getting into your snow gear that after dinner and a couple of glasses of wine its a fight to stay awake past 8.00pm!

Seeing Santa was unbelievable for Grace and unbelievable for us to see her little face, it has definitely given me a taste of skiing and winter holidays...... If you thought like me and didn't know what all the fuss was about, then I'd give it a try.

We returned and had two mad days trying to catch up before Christmas day arrived, and that also went by in a blur. Before we knew it, it was New years Eve and we went off to Warwick for the horse racing. I think I ended up about £6 down on the day, had a couple of short priced winners and blew on the donkeys at the back of the other races.

We saw the New year in at Marks parents house and as per usual I returned home fleeced from card games and slightly the worse for wear (champagne and baileys - but not in the same glass).

Grace had a wheelchair assessment on 2ND January at 10.30 and before 11.00am we had left the building with a new addition to the family...... and Grace has named her new wheelchair 'Dave.

We have had a fairly quiet end to the week except for yesterday when we went to see High School Musical on Ice which had been planned for some time and gave Grace a chance to meet up with some school friends before her return to school tomorrow.

Generally she is quite well at present and has a clinic appointment next Tuesday, but after a week back at school we will be able to assess a little better how she is doing.

I felt although healthwise it hadn't been a good year for Grace, she definitely had a good year of memories to treasure, and just thinking of Lapland fills me with great memories, what a way to end the year.

Sadly all of the weight has gone back on because I have been so relaxed and eaten so much food over Christmas.... so back to the gym tomorrow and a Happy New year to all!

2008

2008-01-01T02:29:00.000Z

Happy Newyear!

I can still hear fireworks at this unearthly hour.

It has been an eventful year.... sometimes very tough and very sad, but hopefully we will draw good memories from it and it will serve to make us stronger and fill our hearts with love and make us smile once again.

Happy Newyear and raise your glass to many special people that we loved and lost....... You will be forever in our hearts

Lapland!

2007-12-28T17:21:00.000Z

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.

Palavas and pavlovas!

2007-12-12T13:37:00.000Z

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.

Confirmed!

2007-12-11T20:59:00.000Z

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!!!

Flight simulation

2007-12-07T09:35:00.000Z

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.........

This mornings update

2007-11-29T11:45:00.000Z

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

Quick update

2007-11-28T20:25:00.000Z

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.........

Off to BCH for a couple of days

2007-11-25T13:51:00.000Z

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

2007-11-16T14:25:00.000Z

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)

Horrors of CF

2007-11-12T22:51:00.000Z

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

2007-11-12T12:07:00.000Z

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.

Hope

2007-11-03T13:02:00.000Z

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

Lapland

2007-10-29T13:04:00.000Z

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

Azithro update

2007-10-24T18:40:00.000Z

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.

This morning......

2007-10-22T08:33:00.000Z

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.

Grace.......

2007-10-21T17:34:00.000Z

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?

Where does the time go?

2007-10-18T17:58:00.000Z

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.

Get out of my kitchen!!!!!!

2007-10-15T13:08:00.000Z

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.

Hmmmmm

2007-10-12T13:11:00.000Z

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

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

2007-10-11T14:15:00.001Z

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.

Is it Wednesday already?

2007-10-10T13:29:00.001Z

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

Night night Sweetpea xxxx

2007-10-08T13:09:00.000Z

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