Grace was up early and ready yesterday to have her port accessed by the nurse, (that meant she had a shower and washed her hair) its no fun when you can't go in the bath for 3 weeks.
Her port was accessed in seconds without problem, as per usual. Entinox gas is the best thing that Grace could have discovered, she never ever complains, cries or flinches when accessed since she has been using it.
We went from there up to the hospital to have the first dose administered (by me) its standard practice when a family is about to commence a course of IVs and also the first dose is always done in hospital to make sure if there is any reaction, then we are in the right place to deal with it.
We went through the T.T.o's whilst Grace was on infusion (eating lunch and watching the Wizard of Oz might I add), and once she had been flushed off we were free to go. It was 1.00pm (shock) I can't believe how quickly we got in and out.
I was planning on going to the gym this morning, but Grace is feeling a bit sore and sorry for herself and needs Mummy around, generally so that she can moan at me and boss me around. Also I have a lot of jobs to do, which includes masses of paper work to sort out Faye's student loan, they consider that they are adult enough to have a huge loan, but have to get the parents to fill it in.
Its 'Take Mummy shopping day' today also, so that should be fun and Grace has the party of the year to attend at 4.30 (The Goth party). Her outfit has been ready for ages and its probably gathering dust, still it should add to the effect. I will blog photos as everyone has asked for a photo. The worst thing is that she wants colour in her hair and she only had it washed yesterday and then can't have another shower until 25 July.
The nurse asked us to make an appointment to see Dr S when treatment had finished because he wanted to discuss Grace with us when she wasn't around. Mark and I feel that he probably wants to talk about a possible broncoscopy and lavage, as I said before he wanted to find out what the cause of her problems were, and it wasn't showing up on any cough swabs, but Grace wouldn't mind hearing any of that as she knows whats going on, but then it makes you wonder what he feels he may need to discuss that she wouldn't benefit from hearing......
Friday, 6 July 2007
Wednesday, 4 July 2007
Poor Jamie
For goodness sake leave poor Jamie Oliver alone!! (well I know he's not poor but you know what I am trying to say).
All to often he gets slagged off for changing the way things are done in schools. Its the best thing he could have done. Have these people ever taken the time out to read one of his recipe books?
He is trying to educate the Great British Public to eat the food 'we used to eat'. When I was a young girl growing up in the 70's I didn't eat ready meals, they were virtually unheard of, except for maybe the odd Vesta with crispy noodles which tasted like dried up crispy wall paper paste.
I hear time and time again that our children (wcf) can't gain calories if they don't get to eat crisps and chocolate. Its total bullshit! You can calorie load any food if you want to and there are plenty of things that are an alternative. For example, Jamie would definitely endorse a company that sells sausages that are locally made from a local farmer using the best quality pork. How many calories would there be in that sausage fried with the same quality bacon and a fried egg? Or that same sausage served with a jacket potato and cheese and butter? The stuff your Mum used to make..... not the processed crap that we get today, that's all he is trying to say, sure he's encouraging fruit and veg, but I would encourage fruit and veg to all of my children with or without cf because they are packed with vitamins that they need to help fight infection.
I give my children without cf the same to eat as Grace, just she gets extra calories, maybe a splash of cream or extra butter or cheese, if she wants it. I do put treats in her lunch box for school, and the teachers are quite happy for me to do that, but they do comment that she has a healthier lunch than the other children.
Grace loves salad, I add olives or pasta or fried or roast chicken pieces to it and even a blob of mayonnaise will add calories. As for treats has anyone that slates Jamie ever prepared his home made chocolate chip cookies?? I can tell you that one batch of those can pile on calories.
So I just want to say give a bit of thought, he has your children's interests at heart regardless of the change in the school menu... and they can always bulk up more when they get home.... I'm not saying that Grace never gets crisps or chocolate or MacDonald's, just no more than the other kids in the family, as a treat.
JAMIES CHOCOLATE CHIP COOKIES
Ingredients
325g flour
255g room temperature unsalted butter, cut into cube sized lumps with one lump kept aside.
170g sugar
1 free range egg yolk
as many handfuls of chocolate chips as you dare.
Preheat your oven to 180c, rub a baking tray with your saved butter cube. Put the rest of your butter in your mixing bowl with the sugar and beat it with a wooden spoon until it's all light and fluffy. Stir in your egg yolk, then the chocolate chips and then the flour. Mix until you a get a lump of dough. Then tear off pieces of dough - any size you like - and roll them into balls.
Place them onto your buttered tray, but remember to keep them 5cm apart as they'll spread when they start cooking.
Bake them in your oven for 10 minutes. When they're done, take them out of the oven and let them cool down a little before tucking in.
All to often he gets slagged off for changing the way things are done in schools. Its the best thing he could have done. Have these people ever taken the time out to read one of his recipe books?
He is trying to educate the Great British Public to eat the food 'we used to eat'. When I was a young girl growing up in the 70's I didn't eat ready meals, they were virtually unheard of, except for maybe the odd Vesta with crispy noodles which tasted like dried up crispy wall paper paste.
I hear time and time again that our children (wcf) can't gain calories if they don't get to eat crisps and chocolate. Its total bullshit! You can calorie load any food if you want to and there are plenty of things that are an alternative. For example, Jamie would definitely endorse a company that sells sausages that are locally made from a local farmer using the best quality pork. How many calories would there be in that sausage fried with the same quality bacon and a fried egg? Or that same sausage served with a jacket potato and cheese and butter? The stuff your Mum used to make..... not the processed crap that we get today, that's all he is trying to say, sure he's encouraging fruit and veg, but I would encourage fruit and veg to all of my children with or without cf because they are packed with vitamins that they need to help fight infection.
I give my children without cf the same to eat as Grace, just she gets extra calories, maybe a splash of cream or extra butter or cheese, if she wants it. I do put treats in her lunch box for school, and the teachers are quite happy for me to do that, but they do comment that she has a healthier lunch than the other children.
Grace loves salad, I add olives or pasta or fried or roast chicken pieces to it and even a blob of mayonnaise will add calories. As for treats has anyone that slates Jamie ever prepared his home made chocolate chip cookies?? I can tell you that one batch of those can pile on calories.
So I just want to say give a bit of thought, he has your children's interests at heart regardless of the change in the school menu... and they can always bulk up more when they get home.... I'm not saying that Grace never gets crisps or chocolate or MacDonald's, just no more than the other kids in the family, as a treat.
JAMIES CHOCOLATE CHIP COOKIES
Ingredients
325g flour
255g room temperature unsalted butter, cut into cube sized lumps with one lump kept aside.
170g sugar
1 free range egg yolk
as many handfuls of chocolate chips as you dare.
Preheat your oven to 180c, rub a baking tray with your saved butter cube. Put the rest of your butter in your mixing bowl with the sugar and beat it with a wooden spoon until it's all light and fluffy. Stir in your egg yolk, then the chocolate chips and then the flour. Mix until you a get a lump of dough. Then tear off pieces of dough - any size you like - and roll them into balls.
Place them onto your buttered tray, but remember to keep them 5cm apart as they'll spread when they start cooking.
Bake them in your oven for 10 minutes. When they're done, take them out of the oven and let them cool down a little before tucking in.
More blog
I have decided as I was reporting on yesterday and today, I will split my posts for each day.
This morning I decided to go to the gym again whilst I had the opportunity. We will be at the hospital for most of tomorrow and I may or may not be able to get to the gym on Friday morning.
I did a 10 minute run at level 6 (I normally do level 5 random) and then 15 minute run at level 5 followed by 5 minutes without incline by whacking the speeds up to eventually 10. It makes you sweat terribly and its totally exhilarating! I did no other work in the gym but went on to have a swim and did 10 lengths of the pool, where I nearly drowned laughing at a man that pressed the cold button on the shower by mistake and let out an almighty yell followed by gasps which echoed all around the pool area.
Yesterday when we went to Starbucks Mark bought me a book from Borders below. It was titled 'Poker for Dummies' (Suzie it really is one of those things you need to do).
I have been watching for some time but decided that I must get involved. I keep winning and Mark thinks thats because I will play or call the most stupid of hands and he will play what he thinks is a good hand and then folds because he thinks that I must have an incredible hand to not fold, therefore he can't read my bluffs because I haven't got a scoobydoo myself. Follow that?..... it is a most incredible game and an incredibly complicated game which I must learn now.... I'm totally hooked.
Grace is at school today and her port is being accessed in the morning so she will be off school tomorrow and I will keep her at home Friday as she normally feels a bit sore the next couple of days, but at least she will have the weekend to get used to it before returning to school on Monday.
This morning I decided to go to the gym again whilst I had the opportunity. We will be at the hospital for most of tomorrow and I may or may not be able to get to the gym on Friday morning.
I did a 10 minute run at level 6 (I normally do level 5 random) and then 15 minute run at level 5 followed by 5 minutes without incline by whacking the speeds up to eventually 10. It makes you sweat terribly and its totally exhilarating! I did no other work in the gym but went on to have a swim and did 10 lengths of the pool, where I nearly drowned laughing at a man that pressed the cold button on the shower by mistake and let out an almighty yell followed by gasps which echoed all around the pool area.
Yesterday when we went to Starbucks Mark bought me a book from Borders below. It was titled 'Poker for Dummies' (Suzie it really is one of those things you need to do).
I have been watching for some time but decided that I must get involved. I keep winning and Mark thinks thats because I will play or call the most stupid of hands and he will play what he thinks is a good hand and then folds because he thinks that I must have an incredible hand to not fold, therefore he can't read my bluffs because I haven't got a scoobydoo myself. Follow that?..... it is a most incredible game and an incredibly complicated game which I must learn now.... I'm totally hooked.
Grace is at school today and her port is being accessed in the morning so she will be off school tomorrow and I will keep her at home Friday as she normally feels a bit sore the next couple of days, but at least she will have the weekend to get used to it before returning to school on Monday.
Big sighhhhhhh!
Went to the gym yesterday morning and did a good 30 minute run. On the cool down when there is no incline I decided to speed things up a bit and ran at 10kph instead of the usual 7.5 to 8 that I normally do. It really was good fun and I decided the next time I go I will incorporate it into my routine. I did lots of arm work, these include 3 different weight lifting machines and drops from a bench (they are sort of like backward push ups) from a seated position you lower yourself up and down from the ground back to bench height, but the bingo wings are still swinging.
After that I did some tummy work and stretches and had to make a speedy exit as Grace had a clinic appointment.
Mark has being saying they won't be happy with her when we next go to clinic. She has been breathless so I know her sats would be rubbish, but we, including the Dr's, have resigned ourselves to the fact that they will never go back to what they were, she used to average around 95-96 but these days 88 is good, her lung function wasn't great either and the nurse felt it wasn't from lack of technique because she can do it pretty good these days.
So yesterdays clinic - Sats 88 lung function poor, don't know what it is in percentages but she managed a 0.7 at very best. This prompted Dr S to send her for xray and had a plan to go along with whatever results came back.
We returned from xray to discover large cloudy area and atleast 10 clearly visible mucous plugs. Dr S seems to think that it is pseudo that is the cause, but coughs swabs don't seem to produce much at all. Therefore he decided that a more agressive way of testing the pseudo was what was needed (not sure what that will be yet, but I have some ideas).
Dr S also seemed a little perplexed as to why there was a drastic dip rather than improvement since her last lot of IV's in June and the introduction of Tobi nebulised. Therefore she is back on IV's for 3 weeks from tomorrow plus big increase in steroids and then intensive cipro following the IV's. I really hope that kicks things into touch, and then finally, at long last he prescribed some ranitadine. The dietician has been on to him for ages to let Grace have a months trial and of course the weekends antics was another chance for her to push it.
The sad thing is, my friend works on reception in the xray dept and she booked us and got us through quickly, but commented on how well Grace looked. It really wants to make me tear my hair out, when I saw the xray I couldn't believe it.
We didn't get out of there until 4.20 and her appointment was 1.30 so Grace had to miss her swimming lesson, she was gutted and also she has to miss the next 3.
Poor girly, we actually went to Starbucks afterwards to get a coffee and we parked in a disabled bay because Grace was in pooped mode and I've never seen her so down. Honestly if anyone had tackled me with regard to parking there today I'd have got the xray out of my bag and rammed it down their throat! (Well not really, I'm not violent, its just idle rantings) but the fact that walking upstairs and taking her dress off and ankle socks to get into her nighty last night left her struggling for a while to regain a reasonable chest rise makes me very worried presently.
After that I did some tummy work and stretches and had to make a speedy exit as Grace had a clinic appointment.
Mark has being saying they won't be happy with her when we next go to clinic. She has been breathless so I know her sats would be rubbish, but we, including the Dr's, have resigned ourselves to the fact that they will never go back to what they were, she used to average around 95-96 but these days 88 is good, her lung function wasn't great either and the nurse felt it wasn't from lack of technique because she can do it pretty good these days.
So yesterdays clinic - Sats 88 lung function poor, don't know what it is in percentages but she managed a 0.7 at very best. This prompted Dr S to send her for xray and had a plan to go along with whatever results came back.
We returned from xray to discover large cloudy area and atleast 10 clearly visible mucous plugs. Dr S seems to think that it is pseudo that is the cause, but coughs swabs don't seem to produce much at all. Therefore he decided that a more agressive way of testing the pseudo was what was needed (not sure what that will be yet, but I have some ideas).
Dr S also seemed a little perplexed as to why there was a drastic dip rather than improvement since her last lot of IV's in June and the introduction of Tobi nebulised. Therefore she is back on IV's for 3 weeks from tomorrow plus big increase in steroids and then intensive cipro following the IV's. I really hope that kicks things into touch, and then finally, at long last he prescribed some ranitadine. The dietician has been on to him for ages to let Grace have a months trial and of course the weekends antics was another chance for her to push it.
The sad thing is, my friend works on reception in the xray dept and she booked us and got us through quickly, but commented on how well Grace looked. It really wants to make me tear my hair out, when I saw the xray I couldn't believe it.
We didn't get out of there until 4.20 and her appointment was 1.30 so Grace had to miss her swimming lesson, she was gutted and also she has to miss the next 3.
Poor girly, we actually went to Starbucks afterwards to get a coffee and we parked in a disabled bay because Grace was in pooped mode and I've never seen her so down. Honestly if anyone had tackled me with regard to parking there today I'd have got the xray out of my bag and rammed it down their throat! (Well not really, I'm not violent, its just idle rantings) but the fact that walking upstairs and taking her dress off and ankle socks to get into her nighty last night left her struggling for a while to regain a reasonable chest rise makes me very worried presently.
Saturday, 30 June 2007
Tummy ache
Last night Grace developed a tummy ache, it was the one with 'the waves'. Oh no I thought, we are in for a restless night.
She has complained a few times on and off lately so I decided to give her some tummy massages and extra lactulose. Eventually she was so tired that she drifted off to a somewhat restless sleep. Mark commented that her tummy had probably settled and that she would probably sleep for the night. No sooner said than she coughed and I had the amazing speed of a gazelle and bolted across the room with potty in hand (always there for emergencies when Grace is unwell) in time to catch what was following the cough, except for a little bit that splattered on her nighty, which we changed and cleaned her up a bit and she didn't even wake up.
This morning when we told her, she had no idea(very strange) and also she was pretty much very restless for the whole night, and didn't really relax until around 3am. I actually watched Big Brother until they had all gone to bed, there was nothing else on but horror films.
This morning she was still feeling a little nauseus and still hadn't been to the loo, so we have given her 50ml of gastrografin and we are on emergency alert, she has been once but nothing major, so we are prepared......
Meanwhile Mark has been shopping for a present big enough to compensate for 50ml of gastrografin....
She has complained a few times on and off lately so I decided to give her some tummy massages and extra lactulose. Eventually she was so tired that she drifted off to a somewhat restless sleep. Mark commented that her tummy had probably settled and that she would probably sleep for the night. No sooner said than she coughed and I had the amazing speed of a gazelle and bolted across the room with potty in hand (always there for emergencies when Grace is unwell) in time to catch what was following the cough, except for a little bit that splattered on her nighty, which we changed and cleaned her up a bit and she didn't even wake up.
This morning when we told her, she had no idea(very strange) and also she was pretty much very restless for the whole night, and didn't really relax until around 3am. I actually watched Big Brother until they had all gone to bed, there was nothing else on but horror films.
This morning she was still feeling a little nauseus and still hadn't been to the loo, so we have given her 50ml of gastrografin and we are on emergency alert, she has been once but nothing major, so we are prepared......
Meanwhile Mark has been shopping for a present big enough to compensate for 50ml of gastrografin....
Friday, 29 June 2007
Weather and horses
I've been to the gym this morning. 'M' wasn't there so I took advantage of a long run and did a 5k. I tried putting my headphones in (normally because I am chatting with my running partner I have no need for them) and watched a little of the golf, but they get on my nerves and I feel like I'm not running to my full capacity as I am trying to keep my ear plugs in. I may purchase some of the really old fashioned type that go over your head and sit snugly over your ears.
After my lovely long run I did lots of arm work and abs and waist. When I left the gym it was raining (again)although judging by what I have seen in the news all of this week, I am glad I live at the top of the hill. A river runs across the bottom of our Cul-de-sac (always wanted to write that!) which divides us from the golf course. Bizarrely, there are people playing today and its not flooded.
Yesterday we went to Warwick racecourse for an afternoon meeting on account that we didn't get to the special 300Th anniversary one last Sunday due to, yes you've guessed it, the weather.
As I am normally in partnership with my Mother-in-law on such days out, we pool our money together and then we would normally have more winners (or so you would think). I hate backing short odds favourites but Marks Mum loves them, hence she had two winners and I had one, but my 11-2 winner paid out far more than her two put together. Unfortunately I couldn't pick my nose for the rest of the afternoon and luckily broke even. Mark had a better day than me, but mainly because he bets away from the course as well.
Our plans have been drawn up for the extension to the kitchen and are now with the department at the council that gives planning permission and building regulations. We don't need planning permission but we need to have the building regs in place and also another detail with regard to the design being built right to the boundary so that the neighbours can't contest when they realise that we have to dig out all of the concrete on their side of the fence.
I have sort of made a rough plan of the kitchen on the Ikea Kitchen planner, and I will try and post a picture of it. Its not to scale because I'm not a maths genius by any stretch of the imagination (there must be something that I am good at?)..... actually I do make a mean fairy cake.
Grace is due in clinic on Tuesday and she seems to be developing her cough in time for clinic. She is also due to have her port flushed on Monday. She is still feeling a bit 'pooped' and a little breathless but not really feeling unwell. Still I think she maybe harbouring something and might benefit from a change in antibiotic.
This weekends plans are ballet presentation tomorrow evening and possible going to see Shrek on Sunday and lunch out... not even the weather can spoil that.
After my lovely long run I did lots of arm work and abs and waist. When I left the gym it was raining (again)although judging by what I have seen in the news all of this week, I am glad I live at the top of the hill. A river runs across the bottom of our Cul-de-sac (always wanted to write that!) which divides us from the golf course. Bizarrely, there are people playing today and its not flooded.
Yesterday we went to Warwick racecourse for an afternoon meeting on account that we didn't get to the special 300Th anniversary one last Sunday due to, yes you've guessed it, the weather.
As I am normally in partnership with my Mother-in-law on such days out, we pool our money together and then we would normally have more winners (or so you would think). I hate backing short odds favourites but Marks Mum loves them, hence she had two winners and I had one, but my 11-2 winner paid out far more than her two put together. Unfortunately I couldn't pick my nose for the rest of the afternoon and luckily broke even. Mark had a better day than me, but mainly because he bets away from the course as well.
Our plans have been drawn up for the extension to the kitchen and are now with the department at the council that gives planning permission and building regulations. We don't need planning permission but we need to have the building regs in place and also another detail with regard to the design being built right to the boundary so that the neighbours can't contest when they realise that we have to dig out all of the concrete on their side of the fence.
I have sort of made a rough plan of the kitchen on the Ikea Kitchen planner, and I will try and post a picture of it. Its not to scale because I'm not a maths genius by any stretch of the imagination (there must be something that I am good at?)..... actually I do make a mean fairy cake.
Grace is due in clinic on Tuesday and she seems to be developing her cough in time for clinic. She is also due to have her port flushed on Monday. She is still feeling a bit 'pooped' and a little breathless but not really feeling unwell. Still I think she maybe harbouring something and might benefit from a change in antibiotic.
This weekends plans are ballet presentation tomorrow evening and possible going to see Shrek on Sunday and lunch out... not even the weather can spoil that.
Wednesday, 27 June 2007
Blog titled Wednesday
Went to the gym this morning and did a 30 minute run and some abs work. Thats as much as I could do because I had a 'funny tummy' all bloated and stuff (it must be my age) or I could still be recovering from how much alcohol I consumed on Friday, probably the latter.
Anyway 'M' and I (no Mark not the one from 007) had coffee and toast and put the whole world to right and then I went home and did a big blog on coping with Cf and having children after already having a child with cf and then deleted it all because it just winds me up sometimes.
Time capsule event to be logged for this month - Tony Blair resigns from Office and is replaced by Gordon Brown as PM.
I have downloaded an application form from the Make a Wish Foundation today. I would like to enlist their help in getting Grace to a pop festival. I know that it is virtually impossible for her to do a weekend, but after Glastonbury this week she has talked of nothing else. She is a huge music fan and the idea of watching all of her favourite bands in a weekend just blew her away. So how would we manage her meds and nebulisers in a tent in all that mud just so that she could see Fall out Boy? she doesn't even want to meet them, just attend and watch the gig. She's such a funny old girl......
Grace remains breathless this week, although she is quite dry she has struggled to get her breath back after exerting herself and she has been hoarse and croaky again, but generally she is well. A post on the adult forum discussing tobi and colomycin brought to my attention that Grace had complained of a lot of headaches last month and hasn't recently. I will take note this month whilst back on tobi of her headache complaints.
Anyway 'M' and I (no Mark not the one from 007) had coffee and toast and put the whole world to right and then I went home and did a big blog on coping with Cf and having children after already having a child with cf and then deleted it all because it just winds me up sometimes.
Time capsule event to be logged for this month - Tony Blair resigns from Office and is replaced by Gordon Brown as PM.
I have downloaded an application form from the Make a Wish Foundation today. I would like to enlist their help in getting Grace to a pop festival. I know that it is virtually impossible for her to do a weekend, but after Glastonbury this week she has talked of nothing else. She is a huge music fan and the idea of watching all of her favourite bands in a weekend just blew her away. So how would we manage her meds and nebulisers in a tent in all that mud just so that she could see Fall out Boy? she doesn't even want to meet them, just attend and watch the gig. She's such a funny old girl......
Grace remains breathless this week, although she is quite dry she has struggled to get her breath back after exerting herself and she has been hoarse and croaky again, but generally she is well. A post on the adult forum discussing tobi and colomycin brought to my attention that Grace had complained of a lot of headaches last month and hasn't recently. I will take note this month whilst back on tobi of her headache complaints.
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