Thought it was about time I did an update......

We went to Barcelona for a few days over Easter. The reason we originally went was because our friends daughter was in a European dance festival. However, they couldn't tell us where their accomodation was until two days before we left and we decided to just arrange our own and make our own way to the dance festival.

We met with them at the airport only to find out that they were based in Lloret de mar, thankfully we had booked a lovely hotel near the Marina in Barcelona itself (I went to Lloret when i was a teenager and it nearly put me off Spain for life).



We had already planned to take Adam to the Barcelona football ground as he is an avid fan of Thierry Henry and it was his birthday whilst we were away (Adams not Thierrys... well it could have been, I don't know).




Our hotel was really nice and we looked right over the marina and was above a whole bunch of seafood restaurants. We got a train and a taxi from the airport and it was very easy to get to our destination.

We visited an aquarium, did some shopping, ate out loads, went to the football ground, did an open top bus journey, went on a cable car, drank coffee in Las Ramblas (a bit like our Covent garden) and went to Hard Rock Cafe for dinner. We had so much shell fish that I think there might be a shortage for this summers tourists. It wasn't wonderfully warm, we needed coats, but it was much nicer than being at home.



Grace had a great time,she found it very tiring and we haven't done much this week at her request. Yesterday we did a bm test as she was a bit lethargic after going for a walk with her brother and sisters at Coombe Abbey (a local beauty spot) it was 6.00pm she hadn't eaten since 2.30 and we thought we should do the test before she ate. It read 6.1, I presuming that that was ok, I can't quite remember, but we logged it anyway with the reason for testing. She has quite a dirty cough at the moment, which is unusual for Grace, coughing is something that is not high on her list of problems, but the breathlesness is slowly sneaking back in. I am wondering how long it will take her lungs to get back to the state they were in before her bronchoscopy.

I haven't been to the gym for a week, but I am going tomorrow morning and really looking forward to it, especially a swim.

As for the dance festival, they did really well and won some cups and medals. Shame we didn't get to see any of it, but we had a great time all the same.

I will put some photos of Barcelona on the blog, but they are from my phone as I forgot the camera.

I've been to the gym this morning. I ran about 4.5k and then did some other stuff- tummy work and leg work. Apparently I should have kept running and ran away......

I've got a really stressful headache now and my eyes are stinging, and all because of children.... one of them falls out with boyfriends, has shouting matches on the phone when everyone is in bed, works all week to earn money to pay for a trip next month only to put it in the bank and still be £20 over drawn, the other bullies the life out of another one and they can't be trusted to be left alone in a room together, one of them gets into trouble for saying the 'f' word in school because they were reciting something from South Park that they had heard from an older ones mobile phone.......

Where do I go wrong? I try hard to be reasonable in my explanations and when I have to repeat myself for the same thing over and over, so that I am realised by my family as a sensible parent that sees both sides of every situation, but they don't seem to take any notice until I SHOUT!!! until then my parenting skills are classed as 'a pushover'............. so I'm going up to bed now with a big fat bar of chocolate, a book and a nice cup of tea and they can all get arrested or something.

Grace finished IV's yesterday. Its been a bit of a week, and she only managed to do Tuesday at school.

Monday was rough, we went horse racing at Warwick on Sunday and Grace ran about all day, its nice to see her running around and climbing on things, but I knew that she would wear herself out, and true to form on Monday morning I couldn't get her out of bed and she was very teary. She returned to school Tuesday, but her teacher said that she had a few grey episodes throughout the day.

On Tuesday evening we had tummy upsets again and she was very teary saying that she was just so exhausted she couldn't believe it. I have since read a thread on the CF forum that meropenum has caused others the same problem. Also the fact that her dose has gone up probably adds to the effect. So there has been no school Wednesday and Thursday morning when her port access was removed, she got into a terrible state as pressure sore had developed without us noticing and it was positively scabbed over the white plasticky square bit that holds the needle in place and she ensured me that it had positively ripped out her insides along with the needle, resulting in a very funny turn and another grey episode and lots of tears.

Today we thought, what the hell, lets make a whole week of it and do gastrografin today as its been due so that she can hopefully return to school on Monday ready for the week and not having anything else to upset her. Grace is not normally like this by any means so I don't think there has been any shirking involved even though she doesn't tend to complain about anything for the rest of the day, but she is then able to just sit around and do nothing much. I suppose it is different if you have to physically force yourself to join in school activities if you feel like crap!

I'v had a little flutter this week as it has been the Cheltenham festival and had 3 winners so far, although not great prices, infact I did better on an each way 2nd called Miko de Beauchene. I have also picked a horse in every race with a stake of £20 and the winner over the entire festival wins the prize money which stands at £140

A win secures 10 points and 2nd 6 points and 3rd 3 points - I currently have 38 points and am in 3rd place, my husband is in first place obviously.

I was meant to start Salsa classes last Monday, but being the busy week that it has been and also having another lodger back at home, I completely forgot, and the very nice people at the local sports centre have agreed to let us start this Monday, so watch this space.

On the subject of hectic weeks. The instruction manual to the eflow reccommends that the 'head' be boiled after each use, Grace has 5 nebulisers a day, she has Dnase at 4.oopm which isn't a problem because thats a once a day dose and can only be used for dnase (some enzyme type reason thingy) but the hypertonic and tobi are done through the same head. This means that it needs to be washed and boiled before and after physio and its meant to have 4 hours drying time.

4.00pm - dnase
6.00pm - hypertonic saline
7.00pm - toby

Followed by washing and boiling again to get it dry in time to take up to bed with us ready for hypertonic at 7.00am and toby at 8.00 am before school.

My point is, is this total rubbish? or does everyone do this between nebs? I feel like i'm forever putting things in and taking them out of a saucepan. I'm going to buy a steam sterilizer but I still think there is an issue with the drying times.

Grace is a week into her IV's, she is doing fine and her clinic appointment was good. Her lung functions was 63%, so not bad, not as good as last time, but still not bad. Her overnight saturations were again border line, but as she seems to be doing quite well presently, overnight oxygen will be reviewed in 6 months time.

I got carried away on Monday morning and forgot to stop running on the treadmill and kept going for an hour in which time I did 7.4k! and only stopped then because I needed a wee.

I'm not going to the gym now until Friday to give my poor old fatigued legs a rest and also because I have so many other things to do this week that I can't fit it in.

Small update I know, but sadly ironing, housework and general laundry and gardening don't make for interesting reading, except for maybe the leopard print wellies I got for Mothers day!! (How about that welly fettish friend?) if you play your cards right I might put photos of myself wearing them in the garden.

Grace going on IV's tomorrow. She hasn't particularly been unwell, its now just routine every 3 months regardless of how she is.

Monday night she awoke at 3.00am with terrible tummy pain and then was sick a few times, very little amounts, but quite clearly the pain was causing her to be sick. The following morning I gave her two big doses of lactulose (although she does have it every day) I have been told that I can give her 30ml in a day if she is struggling.

It seems to have worked and I don't know if we need to do gastrografin just yet, but I think we will have to do it in a week or so. Her tummy was huge during the day on Monday so I sort of expected it. Poor thing has so much to contend with all of the time and the only thing she was concerned about was missing her school trip to the Space Centre today. She has gone on the trip so I hope she is OK, but I don't think wild horses could have kept her away.

So IV's tomorrow, and she has done overnight sats tests twice this week. The first one wouldn't down load correctly and kept saying her sats were below 80 so we had to do it again Sunday night. The damn thing alarmed all night and the nurse said it must be because they are going below 80. I thought not, they were quite low when I checked, hovering between 89 and 93 and on occasions pushing up to 96,but every time the alarm had gone off and I went to check, they were over 90, but she had been woken up every time by the beeping.

We haven't been told what happened with this reading, but as we are seeing the nurse in the morning for port access I expect she will tell us then.

Generally though Grace has been having a better few weeks, even coping better at school, although she is snacking through the roof! and it shows, she has outgrown every thing she has, her tummy is better today but it has been bloated and her face looks like a little hamster (or a big hamster) but she seems ok, if anything a little more teary than normal, but coping with stuff.

I have been to the gym this morning for the first time this week due to lack of sleep for a couple of nights with the sats monitor and Grace being poorly (why do children always get unwell during the early hours?) so it has taken me until now to pull myself together. We also have had a bit of a family crisis, of which I can't discuss and am sworn to secrecy,because its not my secret, but that has been very upsetting too (the crisis, not trying to keep a secret... oh well that's true too)

I am syking myself up for a road run on Friday or Saturday morning because there is just absolutely no chance I can get to the gym again before next Tuesday and I can't swim either presently. We got all exited and about going swimming on Sunday with a friend and then remembered its IV time :( So a road run seems very likely.

Quick blog

Just a quick blog to say that we are still around.

Its the first day back at school after half term and we have been so busy that I haven't had time to blog.

During the week we have been bike riding, we have been to the cinema, swimming and to a ball area.

Grace decided to buy herself a bike so we have been practising as often as possible and hopefully she will be able to ride in a few more days, without stablisers. With this in mind we have been taking advantage of the nice weather and getting outside as much as possible, we have even been able to clean down the trampoline and use it.

This came about because we felt that Grace doesn't get the exercise that we think that she needs during the winter months and maybe it will help boost her lung function and her general well being, and also because since her bronchoscopy, although her steroid intake has remained the same, she seems to have suddenly regained her appetite massively and has grown considerably.

Grace is doing another overnight saturation test tomorrow night and she will be starting her regularly 3 monthly IV's on 28 Feb (they are actually about a week early but we will be going away for Easter weekend).

I went out with some friends on Friday for dinner and after a few glasses of wine, managed to rope myself into salsa lessons. I am aprehensive, but quite looking forward to it, it was sort of taking a leaf out of the book of a very good belly dancing friend,whom I know finds this kind of thing very good therapy...... so lets see.

Not managed to get to the gym one single day in the last week, so I will be back with a vengeance tomorrow! can't wait.

The Teddybears Picnic

Grace had a rubbish 2007, she had been ill for most of it,and in and out of hospital culminating in needing a wheel chair already at just 7 years old.

We wondered what we could do to as a nice surprise because of everything she had endured without complaint.

It was her birthday yesterday and this is what we did-

We had a teddybears picnic. We had to go to the Build a bear workshop to get the necessary bears for the picnic and as the nearest workshop is in Solihull (which is half an hours drive away) we decided to hire a limo.

What a fantastic time Grace and five of her friends had choosing bears and accessories, they even got to stuff the bears themselves.

We returned home in the limo and had the picnic sitting on the kitchen floor on a picnic blanket followed by birthday cake.

Grace said it was the best birthday she had ever had...... but it is only what she deserves..... and still not enough in my opinion.

Pictures to follow-