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
Wednesday 10 December 2008
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.
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!!
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!!
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