Tuesday, September 30, 2008


We had all been having a lovely time at home and the children had settled well into school. It was great enjoying normal life but the bubble had to burst eventually. We are back in hospital with yet another line infection and the girls are away at their Grandparents. It feels wierd and pretty horrible to be back. Wills was quite poorly today but we have caught this bug quickly and are hoping he will get over it quickly and we'll be home in a couple of weeks. William will be suspended from the transplant list for a few days while he is still 'septic' with the infection. That is harder than I thought it would be as I can't help thinking 'what if...'

It is especially hard for Hope who was due to have a French exchange student to stay next week. Once again, plans have been shelved.

Sunday, September 28, 2008

Look at my beautiful children!

I've been playing with my new toy again today. Aren't these children beautiful! It is lovely to be able to capture them so well. William has been feeling tired and emotional and a tad under the weather today so no smiles from him!

Saturday, September 27, 2008

A Free Day in London

Indian Summer Splash

Experiencing Art 'Out of Bounds'

'Up on The Roof'

On Guard

South Bank Beat

A View From the Gallery

Today was a lovely day. I sauntered around London on my own. My main aim was to practise shooting with my new camera. I took 222 pictures, saved 55 and these are the highlights. They even met with Paul's seal of approval! It was so nice to wander around with 7 hours to myself. I rediscovered some places I haven't had a chance to get to for a while, such as The South Bank and found some new places, like the Institute of Contemporary Art. I did some things I used to enjoy doing, and hope to do more of now William is at school. I love walking around and watching people. I did a lot of that today. I read that taking up photography makes you look at things differently and I certainly found that today. I noticed things I have never seen before, textures and contrasts that have been hidden from me for all these years. I started my day in the Tate Modern members room. That is a place I love to sit in and read or do some work. It is 'Open Rehearsal' weekend this week where art galleries and concert halls open up parts not usually available for public view. The Tate had its basement open and it looked great but was sold out. So, instead of down, I went up onto the balcony of the Institute of Contemporary Art on The Mall where I experienced a sound installation (the legs in the photo are not me!). I have never been to this gallery before and enjoyed the 'vibe' of the place. I will be back. I wandered around a little bit more and ended the day sitting in on a rehearsal with Billy Brag for a 'Big Busk.' That was a lot of fun with lots of people singing along and playing guitars with a bit of help from giant chord cards being held up on the stage. Everything (apart from the coffee in the Tate and a sandwich from Tesco at lunchtime) was free! There is so much to do on our doorstep. I am determined to get myself and the children out doing things when we are all together and Wills is well.
It is wonderful to be able to spend time away from everything and even allow myself to stop thinking about it and experiencing art or looking for a good shot instead. In the lovely Indian Summer's day it almost felt like I was on holiday. The girls are having a break away so we will all be refreshed. A good job too really as William had a bit of a dip when we accessed the line to put him on his TPN today. His temperature went up a bit and he went a bit flat and sleepy. Paul really thought he was going septic but he stabilised. His tummy is very distended today and his stoma output is up. It certainly looks like he is brewing up a line infection. I really hope not but I do feel like we have had a bit of a break. I have been able to stop and reflect for a while. I think women do that when they head towards 'middle age'. We get all creative and go on journeys of self-discovery and expression. Of course, I would rather our life were more simple but I am enjoying this age phase of my life.

Friday, September 26, 2008

Tired boy!

William has just completed his first week of school! As you can see in the pictures - he is a very tired boy! He is doing really well and has already read through nearly all stage 1 of 'The Oxford Learning Tree' books. His fine motor skills are a fair bit behind his cognitive abilities so his teacher and occupational therapist are exploring IT to help him record. It may be that his cerebral palsy or underlying genetic condition is impacting his fine motor skills but we will gently try to see if he can develop his writing.
He is very tired these days tends to lean on the table and play when he is flushed off his TPN. He no longer runs around very much. His tummy is very distended and gassy and he seems uncomfortable a lot of the time. We are bracing ourselves for the next line infection as these kind of symptoms do tend to come first. We have been saying that for a while now though and Wills is doing very well and has been home for two and a half weeks now! His record time home over the last year is 5 weeks so we will see if he can beat it this time - unless, of course, he is called for his transplant. He so desperately needs that now. He has bags under his eyes all the time and, although he can look well for him, he never looks really healthy. I want to see him running around again and I want to see red cheeks - we only see that when he has a high temperature!
The girls are away this weekend at 'Honeypot House' a charity that supports children whose home life is difficult, for a variety of reasons. They gives the children an annual weekend away at 'Honeypot House' - a place where children come back like bees to a honeypot! This is their second time going and they love it. It is very quiet here!
The pictures of William above were taken with my new toy. I had a meeting in London today and took the opportunity to take some shots. They were all white!!! I read through the instructions and realised the auto setting should enable automatic focus and exposure. My camera was doing neither - no lights, no beeps! At least I have learned to focus manually and I do want to learn to play with exposure and shutter speeds etc so I can manipulate them for creative effects but one thing at a time - for now, I just want to be able to take good shots while I learn it all and my lovely little camera was not letting me! So, off to Jessops I went to tell them it was malfunctioning. They had a go and agreed it wasn't working. It took them 2 mintutes to diagnose and fix the problem...lesson number 1 - how to put the lens on properly!!! So, I have re-shot the images on my 'arty farty' blog as it has been lovingly called among my nearest and dearest. The girls are getting into it. Their favourite photo so far is the one of syringes full of hepsol (used to thin the blood in the line when it it not in use and to keep it patent). Hope went so far as to rave about it being 'really cool'. Paul is not so impressed by these kind of images. I went to the Tate Modern today and visited the Rothco exhibition and a room with photos of all sorts, including close ups of bricks on houses and a corner with a mop and bucket. With the girls away and Wills tired enough to drop to sleep immediately, we should have plenty of opportunity for a grown-up conversation tonight. Perhaps 'what is art' will be a good place to start.

Thursday, September 25, 2008

I can't believe I did that!

I went out this morning without my mobile phone!!! I have been so good at making sure it is with me all the time. I just forgot this morning. It occured to me half way round the supermarket. I had a dilemma - buy the milk and loo rolls or hot foot it straight home! I hastened my step around the store and rushed home. Thankfully there was no missed call!

While I have your attention, please read on and support Holly. It will be fantastic for Holly and for William and everyone else waiting for a transplant if she wins a slot on the programme. I have lifted this straight of Emily's blog - hope you don't mind Em.

Channel Four are doing a programme called Battlefront where young campaigners are fighting hard to get their cause featured. 19 have been picked and there is one space left.LLTGL Advocate Holly Shaw, has had her "Gift of Life" campaign idea accepted! And now it's over to us.Channel 4 are going to pick the most popular campaign to go through to their final group, with their favourite ones being featured on the Battlefront TV programme. To vote people have to do is visit the website above and click on "Vote". That's it! No need to register or anything else. So please, for the love of pie, vote, pass this on, spread the word, hassle friends/work colleagues etc. http://battlefront.co.uk/campaign/the-gift-of-life/ Holly has a disadvantage in that she has only just got her campaign on the website and voting ends next week (1st October). So we are asking as many people as possible to put a link up about this on their websites, Myspaces, Facebooks, etc. so we can get this campaign on channel 4. Really appreciate any help anyone can give - it would be such a shame for Channel four to run this thing without anything about organ donation whatsoever...

Wednesday, September 24, 2008

A new toy

Wednesdays are going to be my 'me days'. I am not going to do any work. It is a day for me to develop the things I want to do (although I did end up doing some urgent work email correspondence today). However, I also went shopping for a new toy. Feeling ever more excited about my creative response to my journey with William, Hope and Ellie and particulary inspired by 'Transplant', I bought myself an entry level digital SLR camera to enable me to get a lot more creative with my photography. I decided to a use a little of the money the tax man owes me for taking far too much from me for 6 months. The girls have been fighting over my existing camera, that I will still carry in my handbag. I am going to buy them an easy to use 'point and shoot' digital camera each as well so I can teach them too and they can learn to capture elements of their life too. It is important for them to be able to do this as well. I am finding it a hugely enriching and therapeutic experience to explore our lives creatively. Paul is not impressed. He doesn't get the kind of art represented by 'Transplant' at all so appreciates my amateur offerings even less.

I have had a little play with my new toy, you can see the first results on the other blog. It is a start, there is a lot to learn. I have always enjoyed playing with photography and still have black and white prints of school folders covered in tippex written band names and logos from my attempts to capture my 'Goth' years during the lat 1980s. I love photographic images. I always want to know more and can stand in front of a picture for ages inventing the stories that go with it. I think photography and writing complement each other very well and these will be the main media I will be experimenting with. I had some succes with my writing today. I had an assignment back from my tutor telling me that it was excellent work, that I am improving and developing and I am now ready to begin submitting work for publication.

William is still well, although he managed to fall badly and get a very nasty cut on his chin yesterday. Luckily, we are pretty skilled at using steri-strips as we use them to secure his Hickman Line. His chin didn't bleed much but we did realise at bedtime that it was rather gaping. We did wonder if we should take him for stitches but agreed it was not bleeding and it would be so traumatic for William that it would be better for him to have a wider scar. Paul did a very good job of mending him. The girls are also on good form. We have Hope's French exchange student here in a week and a half. It is important to me that we all carry on as usual and Hope and Ellie don't miss out on things but I do wonder what on earth we'll do if we are called for transplant or have to rush William into hospital. We will have contingencies but it would certainly make for an experience for the poor girl to be woken in the middle of the night and bundled off to a friend's with the girls!

Tuesday, September 23, 2008

My Journey With William: An Exploration

I am working, honest guv!! I am taking a lunch break from trying to sort out the little bits and pieces of missing information for the year end accounts for the Charity Commission and writing my director's report for the next trustee meeting.

Whilst taking a break, I have started my creative experimentation on my new, companion blog 'My Journey With William: An Exploration' Please do take a look and share it with anyone else who you think could be interested or offer some interesting comments and criticisms. You never know what you may find there. I am experimenting with photography, writing - fiction and non fiction and all kinds of genres, drawing... Over time, you will find all of these things there. The blog is my virtual sketchbook, a dynamic sketchbook that people can interact with. Of course, I also have my paper notebooks and sketchbooks - many of them. I have always dabbled with stuff but the 'Transplant' project has inspired me to try and make something of it all.

I want to do it all at a much higher level too, hence doing little courses in writing and theology and working through 'learn to draw' books. I am thinking of adding in a distance learning photographt course. You can find all sorts of good value courses, many subsidised for people in our situation. Paul and the girls role their eyes when I come up with the next idea and it must all seem very 'bitty' to them. It isn't though. I am gathering skills that, I hope, will lead me into pastures new in our new post-transplant life. I am doing exactly what these kind of courses are for, developing myself for the future. William won't be so dependent on me then and I need to create something out of our experiences that I can develop. I want to write, non-fiction and fiction, I want to develop a Christian ministry based on what we have been through, I want to create art. All these things are nothing more than exploration at the moment. One or more may take off or they may all take off in a complimentary way. Nothing may take off at all but I will have had a lot of fun and learned a lot about myself in experimenting.

Monday, September 22, 2008

The start of things new

William went to school with our lovely Sue, his personal health care assistant, today so, for the first time since he was born, I had a free day to myself! I say free day, but, of course, I have work to do but it was nice to be able to get my head down in peace and quiet and get on. This is really exciting for me, the start of a new phase in life when I can get some hours in the day back to give my full attention to things I should be doing and have time to do some things I want to do.
Before getting down to work, I had my first hair cut in over a year! The pictures are not great, or flattering. Paul has only just come home so it is late and our nice soft and homely lighting is less than ideal. My attempts to do a self-portrait at arms length resulted in me being blinded by the flash and looking asleep (which is not far off what I look like in these in any case) and the girls tend to chop part of your head off, not ideal when showing off a new hair do. It would have been better to take some tomorrow, outside in the sunlight but I am sure my hair will not look as sleek and professionaly straightened after a night asleep on it. The girls were most impressed with the new look. Paul has bee typically uncommital. William didn't even seem to notice.

Having had my hair chopped, I caught up a bit with Brompton Fountain work and sent a submission off for the writing course I am chugging along with. I am still on the non-fiction bit and am doing and submitting bits and bobs anyway so being very slow with the assignments. I am looking forward to getting to the fiction part but am only too aware that freelance features and articles will be the bread and butter work as I try and build something that could resemble a career in writing.

Last night, I watched the 'Transplant' DVD that accompanies the installation. This has a lot more on it than selected for the installation itself. I am now reading through the book and managed to some time today to reflect on this and think about some creative work I could do in response to it. I take loads of photos and never leave the house without my camera. I know I could use this medium to record our life in a different way to the obvious snapshots I take. I also want to write in different ways than the straight forward diary writing that I use in this blog. I am going to experiment and am going to share the results in another blog, a companion to this one. This way, I hope that people will look and read and offer criticisms and comments that will help me shape my work. So, watch this space...for a shiny new blog linked to this one. I hope to have something up as a starting point on Wednesday.

A little note - My laptop died last week and my saved emails and addresses with it. If you haven't heard from me for a while, could you please email me so I have your address again.

Tuesday, September 16, 2008


On Sunday, Hope and I went to see a piece of installation art called 'Transplant. This was the result of two artists, a photographer and a sound artist, being resident on the transplant ward at Harefield Hospital. Their aim was to capture the experience of those undergoing mainly heart and some lung transplants during that time. With one of the artists being a sound engineer, auditory perception was a key theme and central to the patient's experiences was the idea of having sensory deprivation, having to remain in their rooms, at the same time as sensory over stimulation, on hearing all the call bells and alarms from the rooms surrounding them. The exhibition took the form of large portrait photographs, each with a short sound track of their voices telling us something about their experience or recordings of sounds that they would have heard around them during their time on the ward after their transplant. The soundbites came out suddenly with silence between them. It was a bit eery and un-nerving in many ways. It was very powerful. Hope had never been to anything like that before and was very excited by it, if a little scared by it whilst in the room. It did have a very haunting quality. It was art to be involved in rather than to enjoy.

The experiences portrayed in the work were very interesting to me. With William being so young there is a lot he can't put into words and probably doesn't even think and feel. There was a theme of having to adjust psychologically to the new organs and learn to accept them as part of you, if you ever do! From my limited experience so far, children don't seem to question in this way - they just have their 'new tummy' and get on with it. I wonder if there comes a point later in life when they question and this psychological acceptance becomes an issue? I can relate to the simultaneous sensory deprivation and overload - I'm sure anyone who has lived in a hospital for any length of time can do so.

The installation was very simple and very complex all at the same time. It was accompanied by a book of essays written by the artists, patients and a psychologist who works with the patients to help them adapt to their transplants. The book also contains a DVD of all the photos, together with the sound recordings. I plan to spend some time looking at it all again and reading the book over the next week or so. I am sure this work will be the subject of more blog entries as I explore it further. There is a fascinating month by month account of the development of the project over the year of residency (http://www.thetransplantlog.com/ )

Hope and I went onto the Tate Modern after visiting the installation. We came home with a bright green 'The Bigger Picture' eco bag full of pencils (and a rubber), sketch books and a couple of books on creativity and techniques. We also came home with a huge amount of inspiration. I write about it avidly, on here and in diaries and journals. I am now exploring other ways to record my experiences and emotions using photography (in a more artistic way, as well as the kind of photos I take and put on here), drawing, painting and writing and putting it all together in a more 'multi media' kind of journal. I am not the best skilled at art but I have always been creative. I have long felt a real need to create something out of this and feel this even more after experiencing this piece of art at the weekend.

Monday, September 15, 2008

First day at school

William started school today! My little baby now at school. When the girls started I felt really old. Today, to be honest, the main thing I am feeling is how much I am looking forward to my day times and being able to get on with my work and my theology and vocation course without feeling guilty that I am not giving William enough attention. It will be lovely to have time to give every different ball that I am juggling some decent quality time. Daytime for work, after school for the children and evenings to finish work and relax - weekend as family times! I suppose I could also have felt relief that William has made school age as there have been people who didn't think he would. I don't feel this as, apart from some very scary line infections, I have never doubted that he would still be here. Indeed, now I feel more hope that he will be here a whole lot longer with the transplant.

William loved his morning at school. We were picked up by 'T' who will be his personal taxi driver! William was a bit overwhelmed by the prospect of school so comforted himself a bit with 'blankie' on the way but it had to go in the bag when he got there. In the classroom, William enjoyed drawing 'a boy sleeping on the moon' on the table (paper was stuck all over it). The teacher asked him what a little bit was with two circles aligning each other - William considered for a while and then declared it was his bottom! We had to agree, it looked like one. William read a whole book to the teacher and I. She was so impressed she said he will join a mixed age primary school reading group as he is so advance for his age with reading. William wants to read and is easy to teach. With all he goes through, books are a valuable source of entertainment and distraction for him. After reading, he made up a story of his own about a fire engine who got stuck in the sand. It was then outside playtime. They have a lovely play area. William picked a tomato to smell at snack time afterwards. We then sang songs and William did the weather board. William found one of his favourite library books in the classroom 'honey biscuits' a lovely story about a child making honey biscuits with her grandma and where all the ingredients come from. He shared it with his teacher so you can guess what he convinced her to do with him tomorrow! There was just time for some playdough and starting a maths game before we had to see the nurse to show her William's lines, illeostomy and gastro-jejenal tube. Our gastro nurse specialist is at the school this afternoon to teach them all about line safety, his pump and TPN etc. We have had to adjust his times so William is on TPN all day at school to make things a bit safer than flushing him off there. It was then home time.

William did so well on his first day that he will be going in full time from Thursday. I am in with him this week before our lovely Sue takes over next week. William's current school is a special needs school because he is pretty high need with all he comes with right now. After his transplant we will sit down and discuss whether he will remain there or go to mainstream school with Sue. Talking of 'transplant' the art installation was very interesting. I will talk about that tomorrow.

Sunday, September 14, 2008

The Parish Show

Yesterday was our Parish Show. There were a few 'Diblyesque' moments that made me chuckle throughout the day. It is certainly a day that a lot of people take very seriously. I can't begin to imagine the hours some people must have put into growing their crops, baking several cake in the days leading up to the show and making jams and preserves. A good few people won a handful of classes each.

We don't have the luxury of a huge amount of time, or an organised life and Friday's blog tells of what our days were like leading up to the show - not much space for proper preparation. None the less, we had a successful day. I helped Ellie make some mueili bars while Paul was putting William to bed on Friday. We also put finishing touches to bookmarks. Hope was up late making pizza on Friday evening - she actually deserved a prize for tidying up after herself too. William and I woke early and he made his chocolate chip muffins for the show, for breakfast and for him to smell. He did it all himself too with only a bit of help weighing and measuring. While they were cooking, I arranged some home grown flowers (I had to change class from mixed flowers to one as there was not much left!) with some home grown greenary into a vase and made a 'flower arrangement in an egg cup'. Then, Ellie and I went to exhibit our items.

We returned later to be congratulated on our success. As we wandered around we discovered that Ellie had two first prizes for her bookmark and her museili bars. William had second for both his muffins and his bookmark (not second to his sister, who was in the older age group class), Hope had come second to her pizza (to the vicar's son and she is already preparing her rematch next year) and I had come second with our flowers and third with my egg cup arrangement. I was pleased as I have never done anything like that before. I also got a 'highly commended' for some knitting. I have taken up knitting as a stress relief in hospital. I was doing something patterned but had to start again every time someone disturbed me so ended up doing the plain option. I entered it still on my needles with a note saying 'my new found stress reliever - ongoing!' I won the commendation for giving the judges a laugh!

The children were awarded a lovely collection of prizes, all relevant to the class they had won and I was awarded with certificates. Afterwards, we all bid on the produce in a charity auction. We bought some jams, a violet and apples and have the prize winning marrow - large enough for a couple of stuffed marrow meals this week. As soon as we got home William was back on his bouncy tiger investigating his winnings.

Hope and I are off now to an art installation organised by Royal Brompton and Harefield Arts. It is entitled 'Transplant' and the result two artisits in residence for a year taking photos and talking to patients. Look out for more on this later in the week as tomorrow's entry will be taken up with William's first day at school!

Friday, September 12, 2008

I am Prince William and I live in a bouncy castle...

I have had one of the most trying days of my recent life and I was all set to blog about how Wills and I travelled into London for his vaccination, except it was only ordered this morning and wasn't in stock, and neither was the alternative, and then I locked myself out in the afternoon school run so I and William's nurse and Sue, his one to one, who were here for a meeting with me about school next week were locked out and had to meet in the park (at least it was sunny).... I would have been bloggin about a frustrating and traumatic day for Wills and I but, instead, I have some happy pictures of 'Prince William who lives in a bouncy castle' to share with you.

I had an email a few days ago from Viks at postpals to say they may be able to get some 'bouncy tiggers' and would we like one. My sensible head told me we have no space but Paul and my spontaneous side knew Wills would love one. He rarely gets the chance to bounce at fetes and parties etc because he is usually on his TPN and it is too risky to be bouncing with other children. Now he is on TPN until 4.30pm it is even less likely he will get the chance to play on bouncy castles while we are out and when he is in isolation after his transplant he certainly won't be able to play with lots of other children for a while. He does have a lot of fun on them so we said yes please. Yesterday, I got a mail saying it was waiting for us at our local Woolworths. We went to pick it up after our trip to the hospital. We had half an hour home before getting Ellie from school when I set about trying to blow it up with my bike track pump - after half an hour it still looked like I hadn't even started! Luckily, the toy shop at the end of the road still had some electric pumps (everyone else only stocks them in the summer) and Paul blew it up with that while I was still talking about William's medical needs in school - after Paul had returned home, early thankfully, with a key to let us all in! William was on it before Paul had even finished and soon delcared he was 'King William and he lives in his bouncy castle' (what ever the bouncy item - it always seems to be a bouncy castle to children - this is a bouncy castle that looks like a tiger apparently!). Well, Prince William played in his castle all the time until we managed to drag him out and to bed. He was able to bounce and fall and then relax and rest when he needed to. It is fantastic. Thank-you SO much Post Pals - William has a huge smile today!! It does take up the whole living room, and that is without it's tonge and mouth - a mini slide into a paddling/ball pool! We will save those features for another day. Paul and I are relaxing around it this evening as it is up for the weekend. We will put it up for the day whenever Wills feels like being 'Prince William' or having a bouncy day, or whenever he needs a bit of extra fun.

William also had a lovely Thomas activity book and an ocean colouring book and stickers from HT and, rather appropriately, someone also known as Tigger! He got on with looking at them and doing some colouring while he was relaxing in his castle. Thank-you!! What would have been a traumatic and frustrating day for William turned out to be a real play day!

I have blogged about Postpals before and how fantastic it is. I have added it as a link from my blog now (as I am getting clever and can do this kind of thing all by myself!). Please do have a look and help post smiles on faces like William's, and Seren and Dylan's - see Rebecca's blog 'Life as Mum to 2 Children with Cystic Fibrosis' in my 'blogs I read' section - see, I really am getting clever!

Meanwhile, Ellie and I made museili bars and Hope made pizza (from scratch, all by herself - and made a decent job of tidying up and cleaning afterwards!) in readiness for tomorrow's Parish Show. Prince William was too busy in his castle to make his chocolate chip muffins but will do them in the morning when I also need to do some flower arranging. It is so nice to be home joining in with the show tomorrow. Wills is not all that well and we acknowledged at the hospital today that we are probably living on borrowed time right now before he gets his next line infection. Let's hope that borrowed time lasts a few more weeks!

Thursday, September 11, 2008

Sorting myself out

I have been focusing on myself a bit and doing some much needed 'sorting myself out' over the last couple of days.

There has been a lot in the news lately about carers struggling to look after their own health. I have found this to be very true for me. Those who have known me for a while will know that I have my own health issues, namely diabetes and brittle asthma. It is very tricky fitting in appointments for me and they often get cancelled because we are back in hospital again. I had cancelled my diabetes checks loads of times and, when I eventually got to go for my annual blood tests, I had to cancel the follow up. I haven't been able to fit in hospital appointments so am managed by my GP these days. We have a few 'traditional' receptionists at our doctors, you know, the ones who seem to think their job is to protect the doctors from their patients! The last time I spoke to one I was told that I could not have any more mediations until I had seen the doctor. This attitude was maintained even when I explained that I was stuck in hospital and about to go to Birmingham and could not get to the doctor!!! I got one last prescription by stating clearly that I was on life saving medication and was being told I could not have it! Yesterday, I finally had the chance to get to the doctor when Wills was with his nurse. The good news is I have perfect blood sugar and a perfect BMI (although a less than perfect height - I was sure I was 5'3"but I am, in fact, only just 5'2 when standing very straight and tall!). My diabetes is OK too. I knew I was huffing and puffing a bit lately and the idea of running anywhere seems a very distant memory. So, I wasn't too surprised to know my asthma is a little ropey. My peak flow (a measure of measuring asthma) was very wimpy. The first is always rubbish but I couldn't blow the dial much further on than 150 on any other attempt either - and I blew my absolute hardest! I think 160 was my best. I can blow 270 on a very good day so that wasn't the best news but did explain a lot. I am now on extra steroids, more oxygen at night and a new inhaler on top of my usual 2 and 'theophyline' tablets. I am glad I went now. A bit of self TLC is needed for a while. (note to Mum - I am fine, no need to worry at all, I just need to remember I have this condition for a while!).

So, with my health sorted out, today I set to sort out my life a bit. William starts school on Monday. I have to go with him for the first week but, after that he will have a one-to-one at school (our lovely Sue, who has been working with William for a while now and is virtually family!). So, when he is well and at school, I will have school hours to myself. I have my job at The Brompton Fountain (I will come back to that) but it is only part-time and not enough to guarantee my future solvency on its own. I am doing my theology and vocation course and am always working hard to develop my career as a writer. That is all plenty to be getting on with but it is all done alone from home so a bit isolating. I decided today to do a course once a week to get out of the house and meet some new people. With most of the courses starting in the next week or so, I have left it rather late and there wasn't much left. I was torn between an arty, crafty course just for fun or a writing one. I decided to do some writing as I really have a lot to do right now and it isn't the time to add in a new hobby, fun though it would have been. A freelance journalism course was all I could find to fit the school day and William's regular hospital appointments. I wanted a creative writing course but this will be good and may help me make some more money from my writing to keep me going while I write that 'best seller!'. The course is the middle of London at Covent Garden, from 10.30-12.30 so I will even have time to 'do lunch' and/or visit a gallery or museum before rushing home for the children. I am going to cherish that day each week.

Work at The Brompton Fountain is going well. We have been struggling in the current economic climate and I have been worried about our future. I thought hard and prayed about it all. Almost immediately, I had some offers of help with writing grant applications and some fantastic fundraising news. One girl raised two thousand pounds at Sunday's Women's 5K at Hyde Park and there are several others who are still counting up their sponsor money. I was also contacted by a wonderful runner who wants to work with us and raise money running marathons next year. He wants to see what we are doing and how the money will be spent. I am so chuffed about that. I can't relax and have to keep working hard at the fundraising but I am more confident we can ride the current economic storm. We had a training session for our up and coming sibling day yesterday and several of the hospital staff are getting involved with us though that. Things are looking good.

Wow, I have blogged all this with no mention of Wills and how he is doing. He is doing OK. We bought a Thomas lunch box today for him to take some food to school to smell at lunch time. He was very chuffed with that. He has another vaccination tomorrow, which he will be less chuffed with. He has a lot of extras now he is on the transplant list.

The girls are OK too. All is settling down again.

Monday, September 08, 2008

The impact of the last twelve months

There has been a lot in the news over the weekend about transplants. I have printed off several articles to read and digest over the coming week. I'm sure there will be a lot more about it here as I read and reflect. I am new to the world of transplants and have some catching up to do. What I do know is that any advances that have the potential to help those on the transplant waiting lists get their organs as quickly as possible has got to be a good thing. The pictures above reflect this. On Saturday, we had our annual family fun day put on by the community nursing team. We always enjoy this day. In the past, William has had a fantastic time joining in with all the activities, especially the music session at the end of the day. The picture on the top shows him last year getting really excited playing his maraca and really enjoying the music. The picture on the bottom is this year. William spent almost the whole day on our knees cuddling with his 'blankie'. He enjoyed brief bursts playing in the Thomas ball pond and making a card with stickers but they really were very brief. He had no interest what so ever in the ceramic painting or the music - both things he loved last year. He didn't even run around when he was off his TPN. He just doesn't seem to have sustained energy these days and Paul and I have seen that as a steady decline over the last year. The picture of him watching all the other children looking pale and tired with his discarded maraca on the floor says it all. When I picked him up, he just snuggled up and told me (for the upteenth time) 'I'm tired, I want to go home' That isn't the William we used to have.
One of the surgeons at Chelsea and Westminster told me that the day we went onto the transplant list was the day we got our ticket. It is a ticket for a journey. We haven't begun that journey yet - that begins the day we get the call and William goes into the operating theatre to get his new bowel. Before we were accepted for transplant we had no ticket to anywhere. We now have our ticket firmly in out hand. What we don't know is where that ticket is going to take us. It will be a very long journey and some of the ground we cover will be tricky. I hope the journey leads us to a day when William is, once again, runnig around, joining in and enjoying all of his life to the full. That is the new life that he will receive and that is the gift that our wonderful donor family will be giving us. William has a wonderful spark and it is still there for all to see, he just struggles to sustain its shine at the moment.
To finish, I am going to borrow another image from the lovely Emily's blog (now listed on the right (this is mu life and I choose to love it) as I have found the gadgets at last! ) Emily talks today about a lovely service she went to over the weekend where donors were remembered. The lit a candle and from it lit six candles that were placed in a circle all around. The first candle was then blown out leaving the six shining. What a fantastic image!

Friday, September 05, 2008

Finally sleeping (and waking!) in my own bed

There is nothing more cosy than being at home when it is dark and wet outside! We are finally home!!! We came home on Wednesday. It is lovely to be back with the girls. William is OK bit not his usual self. He was better at the start of the week so we fear he has peaked. We are enjoying every minute at home in case it doesn't last but we are hopeful we will be here for a few weeks at least! William is having antibiotics 'locked' in his line when we stop the TPN at the moment so, hopefully, if he is feeling a bit yukky from the bugs building up in his gut again now his antibiotic treatment is finished, his line should stay clear for a while.

I made a list of all the things I miss in hospital. The girls were top of course and next came; freedom away from asking permission to leave a locked ward, singing out loud, playing loud music, my bed and all my 'stuff'. I have been enjoying all of that over the last couple of days. It does feel a bit strange going about normal things like school runs and shopping with the phone safely in my pocket, knowing we could be called at any time. We are getting on with things but hoping to get that call soon as we can see that William seems to pick up less and less after these infections. He is fine but he seems to stay a little more lethargic and pale each time. It does seem harder for him to beat the bugs too as we are in hospital longer each time.

I am getting used to the transplant now and 'white nights' are less of a problem at home. However, a new problem for me seems to be waking several times in the early hours. I think it is similar to how you sleep lightly and wake a lot when you know you have to get up really early. Subconsciously, your mind stops you from sleeping too deeply so you hear the alarm. I think my mind is stopping me sleep too deeply to make sure I hear the phone should it ring. In hospital, I knew a nurse would come and shake me if necessary. I'm sure it will pass and, anyway, we were assured we would be roused if we had the call. I think they send the police round if all else fails! With my moblie and home phone on my bedside table, I'm sure that wouldn't be necessary!

Tuesday, September 02, 2008

Home Tomorrow!!!

Yipee!!! We are going home tomorrow!!! We have been here 6 weeks. We were supposed to be here for just a week prior to the transplant assessment. However, we found Wills had a bug in his line when we got here. We went to Birmingham with the same bug and came back with it, and a friend in there too. We have now got the lovely new line and a week of IV antibiotics since the old was came out has cleaned up the bugs floating around William's blood stream. They are still in his gut though and it will only be a matter of time before they have leaked and found their way to a new home in his nice and TPN fed Hickman line. The only 'cure' for this situation is William's transplant and, of course, finding him a suitable organ could take months or even a year. So, desperate times call for desperate measures and we are experimenting. William stops his IV antibiotics tomorrow and will go onto course of 'line locks'. This will be a strong solution of an antibiotic put into his line when his TPN is taken down and left there to clean up any bugs that have decided to creep in. We can only do this for a week as the antibiotic is a treatment one and we don't want to cause any resistent bugs. During the next week, the team here are planning to research a different line lock that has been used in Southampton and Birmingham. This is a different kind of drug and could be used more long term. The trouble is, it has been used mainly in adult renal patients, not children but, as I said, desperate times... We just need to keep William well for as much of the time as possible until he has his transplant.

Talking of the transplant, I spoke too soon in Sunday's blog. Last night was one of the worse 'white nights' ever and today, for some reason, I have jumped out of my skin everytime the phone rang with an unfamiliar or 'witheld' number. I guess there will be days when it is easy to get on with life and forget about the waiting list and days when that is a lot harder to do. There doesn't seem to be any rhyme or reason as to what each day will be.

At least, we will be home together for a while. The girls spent the day up here yesterday and we went for lunch in a pancake restaurant. I have always been intrigued by this place but it is a bit pricey, However, Monday is 'Monday Madness' with all pancakes at £5 each. It was an exciting treat for the girls as it was a novelty and the plates were HUGE. William's favourite treat at the moment is having a bread roll to smell so we got him one on the way. He was very content with it while we were eating. For me, my curiosity was satisfied but it won't be added to my favourite little places for a treat around here. Although, I tried a savoury pancake and the idea of a late Monday breakfast of a sweet pancake and a coffee all on my own sounds worthy of a return visit. I will add that to my 'idle pleasures' list for next time we are back at our Chelsea Pad. Wills is at school on the hospital now so an hour on my own on a Monday morning will not be challenging to find. It is always good to have something to look forward to when we are faced with more time in hospital.