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!

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....

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 -

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.

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..........

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...

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

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?

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.

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.

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

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.

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

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.

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?

I'm doing this

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

Why?

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

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.

Shelley have you seen this?

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

Newyear

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......