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 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

Monday, 12 May 2008

Since this was made Emily has had her transplant, but it has been obvious this week that so many people die waiting..............................

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.


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

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.