Wednesday, 10 December 2008

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
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.

Friday, 5 December 2008

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!!

Wednesday, 26 November 2008

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

Tuesday, 25 November 2008

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.

Sunday, 16 November 2008

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.

Thursday, 23 October 2008

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

Tuesday, 21 October 2008

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

Wednesday, 15 October 2008

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

Thursday, 9 October 2008



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!

Thursday, 18 September 2008

I Defy you not to be cheered up by this!

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
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.

Monday, 15 September 2008

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?

Thursday, 11 September 2008

Oh dear what can the matter be!

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.

Friday, 5 September 2008

Back to School

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.

Tuesday, 19 August 2008

Ironic

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

Monday, 18 August 2008

Pictures!






Grace as a catterpillar in DR Doolittle and Bitsy Binx
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.

Monday, 7 July 2008

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?

Sunday, 6 July 2008





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.

Thursday, 26 June 2008

Coming together



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.

Monday, 23 June 2008

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.

Thursday, 19 June 2008

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.

Wednesday, 18 June 2008

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?

Tuesday, 17 June 2008

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

Friday, 13 June 2008

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.

Thursday, 12 June 2008

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

Tuesday, 10 June 2008

First CF Rose


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

Wednesday, 4 June 2008

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.

Friday, 23 May 2008

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

Thursday, 22 May 2008

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!


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

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.

Saturday, 17 May 2008

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!

Friday, 16 May 2008

This has to be the coolest advert ever

Thursday, 15 May 2008

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/

Monday, 12 May 2008

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
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

Tuesday, 6 May 2008

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

Friday, 2 May 2008

This is the news paper report of the armed robbery

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

Wednesday, 30 April 2008

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......

Thursday, 24 April 2008

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...........

Monday, 21 April 2008

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

Wednesday, 9 April 2008

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!

Monday, 31 March 2008


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.

Monday, 17 March 2008

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.

Friday, 14 March 2008

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.

Wednesday, 5 March 2008

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.