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.

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

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

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

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.

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.