Tuesday, 24 July 2007

What a day!

I went to the gym this morning, ny foot has been okish and the swelling had gone down after resting it for a few days.

I decided to do a run and managed about 20 minutes before the pain started again. I got pestered by 'M' to get it looked at before it kept me out of the gym indefinitely. Grace had a clinic appointment today so I decided to go to Casualty aftewards.

We went out for lunch with Marks parents as its our wedding anniversary on Saturday but we will be going away and they won't see us. During lunch I could feel my foot getting bigger and bigger until I couldn't put my shoe on and went back to limping on my heel. So Mark said get that foot sorted out before we go on holiday because you won't be able to walk!

Grace sats were up to 93% and her lung function had gone from 35% to 54% so there was a definite improvement, but not quite enough for the Dr's to be happy. She has to stay on cipro now for the next 5 weeks, when they will see her in clinic again. During this time we need to make an appointment to see Dr S to arrange a bronchoscopy. So a good and bad clinic really.

After clinic we went straight to A & E, I went to the triage room and the nurse said she would arrange for an xray. Two hours later I was called through to a cubicle and sat there for another 40 minutes or so and then a Dr came to look at me and said, get this, " I think you have a marsh fracture, can you go to xray" so I walked all the way to xray and back, even though I have been doing it for 2 weeks, but I'm not an expert. Anyway the upshot of it is that I now am on crutches and have a plaster cast up to my knee and an injury that David Beckham would be proud of.

Mark is not happy because we are going on holiday on Saturday and I have to go on crutches and it could have almost been resolved by now had I gone earlier, but I would never have imagined that you could walk with a fracture!

I have to go to fracture clinic on Thursday morning to have another cast as this one is temporary and then to determine how long I will be off my feet..... but how long til I can run again?

I arrived home at 9.pm and I have made myself a cup of tea, but once I got to the end of the kitchen work top, I had to leave it there as I couldn't get any further without my crutches.... I have to pluck up courage now to get Mark to bring through to the living room. Oooh he's cross with me. Pictures to follow....

Saturday, 21 July 2007

Not blogged for a week

I haven't had a lot of time for blogging this past week, but I have been regularly to the gym even though I have an agonising foot and it keeps swelling up constantly. I have been to the Dr's and they told me to go to A & E as I suspected they would.

Arrived at A&E on Wednesday morning around 9.30, by 1.00pm I decided that I had had enough and wanted the toilet and was hungry so went home. Result, still have a sore foot and no wiser as to whats wrong with it. I still firmly believe that it is flip flop syndrome though.

My running sessions have been a little shorter, but I managed 25 minutes on the treadmill on Thursday morning, I probably could have gone on longer but my foot swelled considerably after Tuesdays session, so I stopped. Not much swelling this time, but still very sore. It feels like very strong bruising on the top of my foot just above my middle toes. My Dad thinks I have gout and my Mum thinks it arthritic, either way I have taken more cod liver oil capsules and avoided pork pie sandwiches and port.

Grace is coming to the end of her IV course, due to finish Tuesday. She still has a cough which is very loose and seems to be coming from very deep down. Hopefully the muck has all but been lifted to the surface and will clear up now. Her breathing doesn't seem to be any better and her Sats were 90%, so there is a slight improvement, but I just get the impression that it doesn't really matter how many courses of IV's she has, they just don't seem to have an effect.

We have decided not to go to America. Grace has had a really tough year this year and I think the long haul and the general travelling around to see all of the sights may well just prove to be too tiring for her. So instead I think a nice warm October Tenerifeee holiday is in order, very relaxing and lots of playing in the pool in the sunshine......

Graces afternoon treatment of ceftazadine and tobramycin just about to be prepared.

Friday, 13 July 2007

Don't know if this will work but I'll give it a go??

Yay! it worked

C'mon if you wasn't sure, then surely thats enough to convince you that you are doing the right thing, become a donor today, its painless.

Thursday, 12 July 2007

Really Thursday 12 July

Today I have been to the gym. I did a 30 minute run and abs and leg raises and plank push ups.

I am going to have a road run on Saturday morning and I have gone back to my old trainers this week to see if that helps my foot. I can run ok on it, but it keeps swelling up afterwards. Honestly I've never had so many injuries (well I have actually, I've broken an arm in two places, I've broken a bone below my knee and I've also fractured my cheek bone before I took up running). I fractured my cheekbone on Newyears day when I fell up a step in the garden. I hadn't had any alcohol whatsoever and had to sit in casualty with lots of injured drunk people......

Grace has gone to school today with her scooter because she is doing a sponsored wheelie day. Its a bright pink flashing scooter. I had to change the batterys so that it would flash, and she scooted all the way to school, except I had to give her a bit of a push up hill. She also took sheets and sheets of Organ donation stickers to give out, we probably have enough for the whole school so hopefully we will be enlisting a few more donors

Tuesday 10 July

Well you would hardly believe it was July. Whats going on with the weather? Well actually its because of global warming but I'm not going to debate about that today.

I went to the gym this morning and did a good 37 minutes running. 'M' is in Majorca presently and will be sunning herself until next Monday and the changing rooms are having a refurb so I have not been hanging around afterwards other than to shower.

I did some abs work and I have gone back to leg raises as my knee seems so much better and able to cope with them. Before I was sort of hooking my foot onto the other foot to take the weight of my leg, so that would indicate a massive improvement.

My foot seems to be hurting at the moment, just above my three middle toes. I've come to the conclusion that I have 'flip flop' syndrome. I seem to get it often in the summer and I think it must be because I wear flipflops, I have had to put ice on it.

Grace is ok but still getting breathless when rushing around and up and down stairs. Last night she had a good bounce on the trampoline for about 10 minutes, prior to starting IV's she couldn't last more than a couple of minutes, but we are not sure if she is getting this from the IV's or whether she is just getting a boost from the steroids.

Monday, 9 July 2007

National Transplant week

I went for a run on Saturday morning, I did 27 minutes which I consider totally amazing as I haven't been out on the road for a while. I set my alarm for 20 minutes thinking that would probably be about as much as I could manage, but just kept resetting my timer and kept going. I could probably have done more but Mark had to go to work and we had to do IV's before he left.

I have been very stiff over the weekend which shows that I am not used to the road, so I plan to get out more often now, and with a refurb being done on the changing rooms at the gym, what better incentive.

Grace has been fine over the weekend and managing treatments OK. Surprisingly her breathing seems better than it has been already. This is all due to IV antibiotics and masses of prednisalone (steroids). I know that these things will help her intermittently throughout her childhood, but eventually she will more than likely need a double lung transplant........................

This week is National Transplant week, 50% of people awaiting a transplant lose their battle whilst still on the waiting list.

There is a serious shortage of donors. Please click on the following links and take time to consider becoming a donor. Thank you.




Friday, 6 July 2007

Goth party photos

The Goth and punks party went down a storm!!........

All sorted

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......

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.



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.

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.