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!

This has to be the coolest advert ever

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/

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

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

This is the news paper report of the armed robbery

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