Thursday, 31 May 2007

Went to the gym this morning at 8.00, I had done a 33 minute run, some abs and arms work and 8 lengths of the pool by 9.40. I had changed and had a shower and was home for just after 10 oclock. I love going early and having a workout so that I still have the rest of the day to myself. Sadly I can only do that during half term. I was trying to get home in time for 10 because Mark was leaving to play golf, but luckily Faye was home to look after Grace until I got home.

It was a wonderful feeling swimming early in the morning and having the whole pool to myself. It gives you time to relax and think, and it is very relaxing after you have just done a 30 minute run. I thought that I would book some swimming lessons for Grace now that she has finished her IV's, she may get through the summer months now without having to have swimming lessons interrupted because of treatments. This came about because Mark and I were having a discussion the other day with regard to the fact that Grace seems to be on so many treatments already at such a young age, and all of the things that she has already picked up makes me wonder if she is going to have worse problems at a young age (for example being put on the transplant list in her teens. I am not being pesamistic, just realistic and looking at the worst possible scenario.

Therefore we decided that we were going to help her the best possible way we could think of and go for the fitness aspect in a big way. She is already very influenced by the fact that I exercise and run regulary and Mark has always played a lot of sport and presently has started going back to the gym and plays golf atleast twice a week now, (there was a lull for a couple of years after surgery on his knees). With that in mind we have also decided that as soon as she is old enough we will pay for a full gym membership so that she can use whenever she wants to.

Grace gets up in the morning and does stretches and sit ups and jogs on the spot, she also does a run round the school field every evening after school and other class mates now do it with her (weather permitting). We also have two trampolines in the garden now, and let me tell you if you haven't done it for a few years, it really takes some getting used to. My friend 'M' and I jumped on it and laughed ourselves stupid! which isn't good when you are forty something and your bladder isn't what it was! 'M' was even in the winning British trampoline squad in 1978 (when they won in America) and still she ached everywhere for the next few days.

We have had a hectic week and today is a day to ourselves, so we are going into town for a browse and then to Starbucks for a coffee. Yesterday Graces friend came for the day and they played in (well trashed the loft) and it took a while to tidy up. They also made cookies and shelled peas.

She is going to another friends tomorrow to play so hopefully I can catch up on some much needed hoovering whilst she is there ( although I will probably take the opportunity to read and slob around)........and finish the cookies!

Monday, 28 May 2007

Rotten weather good weekend

After collecting Grace from school on Friday we decided to go to Stratford Racecourse for the night meeting. We took the deckchairs and some Pimms (buy one get one free at Morrisons). In the first race and the last race there were horses running with 'Harry' in their name. I always back a 'Harry' because thats my Dads name.

I chose the first one as my main horse because it was a good price but then ended up as favourite, well it won, but I didn't have much on it. The next four races I chose 2nd but because they were all short odds I had to have them to win except for a 5-2 which I had each way but only got my money back.

On the last race I chose Mikado as my main horse (Tony McCoy was the jockey) - my Mother-in-law calls him sh*t McCoy because he always lets you down when you don't want him to. I also thought I would stick a fiver each way on 'Champagne Harry' at 20-1 and guess who won? I won a few quid back and gave some to my Dad when I saw him on Saturday because it was his fault that I won it, he was very chuffed.

On Saturday we did the usual tap and ballet class in the morning. Generally I read the paper and drink coffee and chat to the other Mums whilst Grace does her classes and then we went home for lunch. I cut the grass which was a good job because I think it has rained solidly since, paid a visit to my parents and then on to Marks parents.

Sunday we did nothing, we stayed in and I dusted off the cooker and made Sunday lunch (still recovering from the shock) and the children just played draughts and ps2 games all day. Our friends texted to say they had bought a new kitten called 'Lilly' and she came from Handsworth. I thought she was really cute and they told me that she had a brother and two sisters that also needed homes, but Mark was having none of it, he hates pets. Today Grace and Faye are home, and I am dedicating today to tidying up and ironing.

Tomorrow I will hit the gym very early so that hopefully if the weather is a little better we can go to Warwick Castle for the day.

Grace has been well since coming off IV's, she has complained about a pain in her breast. I think its because of the plaster that goes over her port, but I can't help but think about port infections. I keep touching it and she curls away from me, so it must be quite painful, she says its better today than the last two days but still very guarded. She doesn't mind if I touch the actual port area, just above it. Hopefully its nothing and things will go back to normal.

Friday, 25 May 2007

Another household disaster

Why is it that whenever you have a job done on your home it opens a whole can of worms? We had the bathroom done a few months back and it looks really lovely, but apparently a faulty washer caused us to need a new kitchen ceiling. The builders have been here for two days removing the boarding and replacing it and skimming the ceiling. They are also going to paint the rest of the room for us. This in turn caused another knock on effect where by the decorator tried to scrape the 'sticky up bits' off the walls whilst preparing them. What he thought was a sticky up bit turned out to be a cable sticking out of the wall and he blew himself across the kitchen and blew out all of the electrics.

When the electrician arrived he said it would seem that the people that lived here before us decided to do their very own electric botch job of wiring up the cooker hood themselves and consequently nearly killed the painter. He did say however that as long as we didn't use the cooker hood (which we never do for some reason) it would be ok until the extension is started in the next few weeks because that wall will be knocked out anyway. Phew! thank goodness for wallpaper scrapers with wooden handles.

I have been to the gym this morning, 'M' wasn't there so I worked alone on the treadmill and did 30 minutes running, 36 minutes in total with warm up and cool down. I then used the exercise ball to do some abs and a few leg raises, but not many because I couldn't lift my leg with the dodgy knee too much today. Maybe its because I have been lengthening my runs recently, who knows what sets it off. That was all I had time for because the painter texted me to say he would be there for 11.30 and I had to get a move on.

Grace had her IV access removed yesterday morning and she spent hours in the bath last night and washed her hair, I then had to smother her in moisturiser and paint her toe nails and finger nails. Her toes are pink with gold glitter and her fingers are alternating bronze and turquoise. Lovely!!

I am off to Stratford racecourse this evening for a bit of recreational stuff and a bit of shouting at Mr McCoy (if he's there, haven't even checked the racecard yet) and on that note I had better get to it.

Wednesday, 23 May 2007


I have just had to make another posting today, I have just realised that exactly one year ago today I began training for the Hydro Active Challenge. For some reason I thought it was 26 May, but just checked it and was shocked that I almost missed it!

It all seems like such a long time ago now. I really wish I could do it again, but the fact that I am struggling to find anyone to manage Grace this year whilst I am away, and possibly struggling to get Kristi to go this year, plus I found it very distressing last year that only one member of my family sponsored me and that was someone who lives half way around the world and not a local family member that I see regularly. Very sad indeed. I also found that I wanted to do different things to everyone else last time, and would probably benefit more if I went on my own, I don't mean it in an unkind way, I love peoples company, but I'm not very good at speaking up and say 'well I don't want to do that' and end up going along with everyone elses plans.

So because of the this and thats, I will probably not be going this year. But I wish all the luck in the world to the people that are going and will be with you all in spirit and will make my own personal sponsor.

Good luck to everyone

Cat poop!

Grace went to clinic yesterday, it was mainly to check her tobi levels and decide whether or not she needs to remain on IV's.

She had lost some weight (which is not surprising) she did not have much of an apetite whilst on meropenum, and the nebulised tobi has been making her feel a bit dodgy for a while after using it. She also seemed to have lost some height aswell? I think they must have used a different machine to normal.

Her lung function was about the same as it normally is (because she just hasn't quite mastered it yet) but her cough was dry and there was no wheeze heard, so generally they have decided that she will stop IV's tomorrow after her morning dose. She is very pleased about this because she has missed her 'run' after school everyday, she has been walking around the field with the other girls, but is desparate to get running again. It makes me laugh when she comes out of school and says to her friends "are we doing the run?" there is around 6 girls that do it with her now, its lovely that they show their support at such a young age.

I went to the gym yesterday and did a pleasing 30 minutes on the treadmill, some floor work, which included using the exercise ball (I love the exercise ball) and some work on my arms, I used the weights and then lowered myself off the bench to do a sort of a push up but backwards (as if I was lowering myself from the bench to the floor and then back up again) really effective on the upper arms. I also managed to have a swim and a spell in the jacuzzi.

I decided that today, whilst I had the opportunity, I would go to the gym again. Tomorrow I have to stay in whilst the kitchen ceiling is re-boarded and re-skimmed and I had planned to go the gym Friday anway, so I will have done the 3 sessions I had planned to do.

So today I did 35 minutes on the treadmill, I am working my way up to 6k, so far I have been doing a little over 4k, but I want to do atleast once a week out on the road to see if I can maintain it there also. I did some more arms work and used the exercise ball again form my sit ups and then did some leg raises. The first 10 were fine but on the second 10 I found my knee was playing up and only managed 8.

Did lots of work on the garden yesterday and it is looking very tidy, I just need to get some new plants now. I was told to keep 'box' as it was very easy to maintain and virtually impossible to kill (well I have just proved them wrong). Actually I am generally quite good with plants, its just that sometimes when I have fitted in all of the other chores for the day, I just can't be bothered with gardening, I know its supposed to be therapeutic but it just bloody annoys me. I find that no matter how hard you work, its never ending and after a couple of days it looks like a jungle again, and as for the cats in this area, I don't know why they can't just go and poop in their own garden. I think a law should be passed to keep them on a leash the same as dogs that way the owners can be responsible for their own pet poop eeeeyyaccck! If i'd wanted to clean up pet poop I would live on a farm...... anyway moan over for the day and back to maintaining the garden

Friday, 18 May 2007

The neverending tunnel

Got up this morning and did the usual routine of physio, washed and dressed, breakfasted, IV's, tobi nebs and other oral nebs. (So matter of fact about it now). Infact I have thought about making short film for people to see what Grace has to do in a day.

My middle daughter Faye is studying performing arts at college, and part of her course work was to make a short film which she has now submitted, but upon discussion we thought that with hindsight we should have made a film about Grace.

So it will basically show what her routine is for the day, how many meds she is on and at the end show a friend commenting " you would never know there is anything wrong with her".

Graces first day at school on IV's upset the teachers a great deal. Generally Grace is a fighter and won't give in to anything. I told her she could come home from school when she had had enough and I tell her to sit down and have a rest all the time, but its as if she has this agenda to fit in everything now. The EA was distraught when I went to collect her at 3.30, she explained that Grace had looked very pale and blacked eyed, a bit like a panda and she really looked like she had struggled through the day. I explained that she is normally like that for the first few days, but then perks up, and true to form she is now bounding to school in the morning, (except for the bit where she feels sick because she can't stand the tobi nebs, but does it anyway). She has this little trick of belching all the way to school until she feels well enough to eat a sweet.

The teacher says we all just take it in our strides and never seem to get dragged down. I told her believe me we do, but we see the things that go on inside the house everyday, whereas outsiders never get to see. Hence the idea for the film.

Grace is due in clinic again on Tuesday, she will have completed 12 days of IV's by then. The nurse seemed to think that she would remain on them an extra week, but I can't see it making any difference how long she stays on them, presently whatever they try she is symptomatic again within days. Honestly since Christmas there has been no let up.

I've been to the gym this morning and I did a 30 minute run today, I did a few abs and that was about it really, I was just happy to get a good run in. I have had a lot to do again this morning. This included the terrible job of choosing flowers for a funeral, it would seem that we have lost a lot of people around us in the last few months, the latest being another school friend of Kristi's aged just 23. Things like this really do make you think deeply about what is and isn't important in life don't they.


I have decided today that I am going to buy a big hat (in loving memory of Chris) as he and his Mum like their hats, and I'm going to Ascott...... just need to find someone to go with me now, the majority of my horse racing friends are male and they don't really qualify for ladies day. My partner in crime (Mum-in-law) will be on one of her many holidays and Mark will be working as its Ascott, so I am open to any suggestions. Its a shame my niece lives so far away, but I might consider dragging her to the Kentucky Derby next year..... mmmmm now theres a thought.

Tuesday, 15 May 2007


I went to the gym this morning. I did a 27 minute run and a cool down, then I did some floor work (abs mainly). I'm hoping to go for a road run Thursday morning and the gym again Friday, I wanted to get at least 3 sessions in this week. Lately I have been so busy that I can't even take a leisurely morning at the gym these days. I used to love to run and swim and then have a coffee, but it seems I have to get things over and done with and get going onto the next thing.

Today I met Mark at Starbucks and we had a nice coffee, he's off work today and tomorrow, he did his banking whilst I was at the gym and we had the rest of the day to ourselves. We spent the afternoon watching the horse racing and trying to pick the forecasts on each race (because we normally do pick 1st and 2ND between us if we've not got any money on it).

Grace has been to school this week despite being on IV's, she had a tough first day yesterday, but seemed better today, although she is very tired now. I think the meropenum is affecting her appetite as she is not normally difficult to feed. Today she did eat her packed lunch at school but could barely eat her breakfast and has had two b b q chicken wings for tea and a flaked cornetto type ice cream.

The nurse came out yesterday to check her tobi levels and she said that judging by the way she was yesterday then it would be unlikely that she gets taken off IV's after 14 days because her cough had become considerably loose. Which is complete piffle as she always gets a very loose cough as soon as she starts IV's, I think its just the meds digging up all the rubbish from the bottom of her lungs which wouldn't come out without help.

Tomorrow we are due at BCH for Graces 6 monthly check. It has been re-arranged once already so that Dr Weller could see her at Coventry clinic, but he missed us due to traffic problems. So this is the new appointment which we have now cancelled again today as she is being seen at Coventry on 22ND of this month. The secretary asked us when we would like our next appointment so we asked for September which will put us back on par for Graces 6 monthlies.

All the same we have decided to have a day in Birmingham and break the week up for Grace. I know she should be in school but a little treat doesn't harm now and then especially as the school knew she would be out today anyway. I'm sure they will give her homework to catch up and she will complete before the majority of the children that should have done it in class.

I did write a considerable few paragraphs on the educational system, but decided to delete it because it was nowhere near as edumacated and eloquent as a learned friend has written recently......theres no worries of me ever becoming Prime Minister.

Friday, 11 May 2007

Day 1 at home on IV's

Yesterday morning Graces nurse came out to access her port ready for IV's. It was very smooth and quick and she didn't bother at all (hooray for entinox!. Grace has never been better since we switched to entinox gas to gain access, before when we used amitop cream she would start panicking as soon as we had put it on the port area.

We spoke to the nurse about the e-flow as she had brought it along with her but the part I had ordered (drug chamber and filter) came without instructions so I didn't know how to prepare it. She did a test dose of saline to show us how it assembles and agreed to meet us at the hospital at 12.00 to do the dose for real. We arrived at about 10.45 and was shown to a room to drop Graces stuff off and then had to go to do a lung function test. When we arrived back from lung function Grace had to then do the test dose of tobi in the new machine.

Well we certainly wasn't prepared for the reaction. Grace couldn't keep it in her mouth to inhale more than twice without coughing and wretching! Apparently it has a taste sort of like aniseed or mint (both of which Grace can't stand, it was a nightmare trying to get her to use normal toothpaste)anyway she became very distressed and we had to keep switching it on and off and it took around and hour to do a 2 minute dose. She kept crying and crying so the nurse went down to the hospital shop to get her some fruit pastels to try and suck one whilst inhaling but she just ate the sweet and refused blankly to let us put it back in her mouth. Eventually another nurse said why don't you just hold it near your mouth and inhale? Well that worked enough in order to finish the dose.

After that traumatic experience we then did refresher training on IV's and administered tobi and meropenum and Grace waved to her friend from school who has asthma and was on the opposite ward,three nurses, Mark and myself then had a go at doing the blows on the lung function machine, and then went off to Starbucks for some therapeutic cake and coffee.

When we got home I got physio out of the way quickly so that we could do the dreaded tobi nebs. Grace was a little panicky but I told her she didn't have to put it into her mouth until she was comfortable with it, and I moved my new cushions out of the way just incase (chucked up on new shoes once when doing gastrographin). She coughed a little at the start but managed to keep inhaling and I managed to get her to put the mouth piece into her mouth near the end when the vapour was trailing off. It is very overwhelming and the vapour just billows out at the start and I think thats what made her panic, along with the vile taste (the nurse said she thought it tasted like gin and tonic, maybe I should have a few myself).

This morning I have kept Grace off school for two reasons, firstly, she is always a bit sore from being accessed for a couple of days and is very cautious in her movements, and secondly, because she has not had meropenum before I wanted to make sure she was ok with it before I left her to her own devices.

That means that I am unable to get to the gym today. Mark will be working until 9.00pm as there is late night racing and he is a member of staff down due to annual leave. So that left the only alternative of road running. I went out at around 6.40 and it was nice and cool and windy. I did a 25 minute straight run, and then had to walk round the block twice for my cool down, my muscles were very tight. I got home did some abs exercises and had a shower and was sitting on the bed chatting to Mark and Grace by 8.00am Grace has now had her first IV's for the day and Mark has gone to work. Now for the next dose of tobi nebs....................

Thursday, 10 May 2007

Sad News

I learned this evening that my good friend Suzie's son died late last night after fighting a very tough battle with CF......................

R.I.P. Chris Pearson xx

Tuesday, 8 May 2007

Change of plan

I didn't manage to get to the gym this morning. Grace woke up at 6.15 and said she was really cold. I checked her temp and gave her some calpol. She was 37.4 so not too hot but she didn't look too good.

So she is off school today. Instead, because I was already up, I left Grace in bed with Mark and decided to go for a run before he went to work,who knows when I'll get another chance? I might get out tomorrow morning but its Marks only time off until Thursday and then we will probably be at the hospital all day collecting medication and getting port access and testing out tobi on the new eflow etc etc.

My run was very invigourating, especially when its really windy, you get your cobwebs well and truly blown out, and it also gives me time to run off anything that has really gotten on my nerves or bothered me so that I am distracted. I ran for 19 minutes without a break, which I am pleased with, its less than I am used to, but I don't want to over strain my knee. I walked for another 2 minutes and then ran for a further 6 minutes. I did some cool down exercises and stretches and a few abs. M phoned me later in the day to make sure I had done my exercises because she hadn't seen me at the gym.

When I went shopping in Solihull last week, we bought a Bonsai, its lovely and very therapeutic, I keep it on the windowsill in the kitchen and I will take a photo to post here so that I can remind myself of its progress.

As I am unable to go out today I tried to do the shopping on line. It went very well and I couldn't believe how easy it was. However, when I went to arrange a slot to have it delivered they didn't have one available until Thursday which is rubbish considering I need my supplies today! I will have to wait for Faye to come home from college so that she can stay with Grace whilst I shop. Mark is working until 9.00 this evening now that its late night racing, still I shouldn't complain we had a lovely day out at Warwick racecourse yesterday, I didn't have much luck but a 9-1 winner saved me from disaster. Grace on the other hand won £15 on the last race because the horse was called 'Jill'. She soon put that in her piggy bank when she got home.

This last piece is dedicated to Chris Pearson, he is currently fighting for his life and his Mum is a good friend and she and indeed her entire family are struggling. I really hope that Chris can find the strength to pull through. He had a double lung transplant last year about 12 days before we did the HAWC and came on in leaps and bounds and baffled all of the Dr's by his progress. I'm sending positive thoughts and get well thoughts and really wish that he could do it again...... Lots of love and wishes to all the family and fingers and toes and everything crossed here at the Lombard house hold.

Friday, 4 May 2007

4 May 2007

Yay! Its Star Wars day today, (Mark you will probably be the only one that knows what I am talking about).

Been to the gym this morning, I did some tummy (abs) work and a 25 minute run on the treadmill. I am going out this evening with the girls from school to a country pub called 'The Shilton Arms' where apparently you can get a 'Desparate Dan' pie. Can't imagine I will be ordering that though.

I've been to the pharmacy this morning to collect Graces tobramycin and after learning that it needs to be refrigerated, rearranged my fridge to accomodate it. The pharmacist made a big point of saying it cost £1400. (sorry my writing down of figures is crap and so is my geography) not that that is relevant.

I went to Starbucks by myself after the gym as M had lots of ironing to catch up on, so have I but hey ho! Starbucks is above Borders book store and there is also a paperchase so I purchased some cards and had a coffee whilst doing some correspondance that muchly needed doing.

Yesterday Grace didn't have to go to school as it was being used as a polling station and as Mark was not working we decided to go to Solihull for the day. We did some shopping and had lunch at Wagamamas. I had Miso Ramen a kind of noodle soup which came in a washing up sized bowl. I couldn't finish it all and I got loads of it down the front of my t'shirt (nothing unusual for me). It also meant that we didn't vote in the local election because we weren't around. I think that whatever council we have here they are all blinkin corrupt and we still have big holes in the road.

Recently the labour council were being investigated after closing down a library saying that it was out of their hands as there were too many libraries in the city and it could no longer afford to fund it. It turned out that they made it up to spend the resources else where and now they are in all kinds of disputes for fibbing. So it sort of made me think that shopping and Japanese Restaurants were far more important.

I have just ordered Grace an 8ft trampoline and have absolutely no idea where I am going to put it, but hopefully it will give her the exercise she needs. I was going to re-enrol her for swimming this week as they had kindly kept her place open until she returned, but she is starting IV's next week so I'm glad I waited, but atleast she will get 3-4 months over the summer before she should need more IV's. Next appointent will be BCH on 16 May.

Wednesday, 2 May 2007

02 May 2007

Went to the gym yesterday. I did around 22 minutes on the treadmill, and did some floor work. I worked on abs and arms. I have been pestered by the personal trainer all week and eventually I told her yesterday that my knee was hurting due to her insistance that I keep doing exercises on it. She told me to stay off the treadmill,but I have been running on it since returning from holiday and have had no ill effects from it, she has now advised me to see a physio. I know this, but I don't really want to find out whats wrong with it incase it means big surgery or something that is going to put me out of action for a while. Anyway as long as I can run that will do me.

We went out for tea last night for Fayes birthday to WingWahs Chinese restaurant (a big favourite with the children because of the chocolate fountain) and I ate far too much so I will have to run my socks off tomorrow.

Grace went to clinic yesterday, mainly the appointment was arranged so that she could do a test dose of tobramycin, but unfortunately even though I put the prescription into the pharmacy a week ago, it is still proving difficult for them to get it. They still saw her and her lung function and sats had improved marginally. However she still had signs of a wheeze on her left lung so IV's are starting next Thursday and also it will give them the opportunity to try the tobi up on the ward whilst she is being accessed. She is also going to try meropenum instead of tobramycin IV's, one that she hasn't had before so hopefully there will be a noticeable improvement. I think that she has just become immune to them all, still it doesn't bother her any presently.

I have been asked to mention our family friend 'Dave' in my blog as he has just become an Internetee? he has only just gone on to broad band internet and has never had it before, so he says he isn't going to read my blog unless he is mentioned in it. So here goes - Dave, Dave,Dave, Dave,Dave Dave, Dave and finally Dave.........