Broadening Our Horizons

New addition to the family

2010-11-12T09:08:00.004Z

Wow, it's been a long time since I've updated this. To be honest, I didn't want to write here when William was so unwell over the summer. He had 8 weeks with his new bowel not working after a tummy bug and was back on TPN again. The internet connection was dicey to say the least and I just couldn't bring myself to write entries about a new Hickman Line, pouring stoma output and TPN. After an unsettled time, Wills is thriving more than ever and even beginning to find the confidence to start eating.

Our biggest news is that we have a new addition to the family and with the new start we hope he'll bring, I've decided to start a new blog. I'll leave you with that cliffhanger and invite you to hop over to the new blog and I'll see you there...

A Very Long Snake

2010-06-26T23:14:00.002+01:00

If you've been following this blog for a while, you'll remember how William had a fair few ups and downs while he recovered from his transplant and how I likened it all to a game of snakes and ladders. We had a nemesis snake every time we tried to turn his feed above 15 mls per hour and became more well known than I would have liked in X-Ray and Theatre to identify and fix blockages. When you go for transplant assessment, it is made very clear to you that transplant, although a wonderful, life saving thing, is not a golden panacea and that having a transplant is swapping a set of chronic medical problems for another, all be it a less dangerous and immediately life threatening, set. Sometimes, it is all too easy to forget that that game of snakes and ladders goes on throughout life after transplant. We've just had a bit of a reality check and have hit a very long snake indeed, one of those you land on when you think you're home and dry in the game and that takes you all the way back to the first line of numbers.

William had his stoma revised in April because it had prolapsed. He'd never been right since then and seemed to be losing a lot through his stoma, especially after his special milk shakes (scandishakes). His weight had stuck a bit and I was concerned but not too worried because he seemed well in himself. I did have the feeling we may be facing a hospital admission before too long for a review and, perhaps, a change of feed. What I wasn't expecting was for Wills to wake one morning looking more dreadful than I've seen him since his transplant, white with dark rings under his eyes and floppy. I called his Dad who, luckily, wasn't at work and we took him to Chelsea and Westminster. He was very dehydrated and his stoma was pouring. Tests showed he had a lot of sugar in his stoma fluid, indicating he wasn't absorbing much at all and his blood sugar levels were low, even after a milk shake. I was worried he was rejecting his bowel and I wasn't the only one.

The next day, tests came back showing he had rotavirus. We all breathed a sigh of relief and he was started on immunoglobulins (factors in the blood that help fight infections) into his bowel to help him combat the bug. Things didn't settle and, as rotavirus can cause rejection, we were rushed by the most stomach churning blue light ambulance ride to Birmingham Children's Hospital for a scope and biopsies with the concern that he was rejecting. Thankfully, all the tests have shown that William has not had any rejection. It's always a relief to rule out the 'big R' but it's only half the story. Infection is another big worry after a transplant, especially infections that directly affect the transplanted organ. Wills had rotavirus but the team feel he has had another, probably norovirus, from about the same time he had his surgery and that his bowel has been grumbling about that before the rotavirus tipped it all over the edge. His bloods were the worse I have ever seen them to be, such a worry when these viruses, although nasty, are pretty normal and, even more worrying, are everywhere!

That snake really has taken us to one of the very first squares. Wills is back on TPN (the IV artificial feed he depended on before his transplant) while we wait for his bowel to be ready for feed again. He is having 5 mls an hour of the simplest of feeds, an 'elemental feed' made of nutrients at their very simplest, single molecule state. We'll wean it up very slowly and wean down the TPN but have a long way to go to the 50 mls per hour William needs. It was upsetting to see him back on TPN and see that white line in his chest again but he's lost 3 kg and needs some nutrition. It's even more upsetting to be away from Hope and Ellie for a prolonged stay in hospital again.

I am trying to remind myself that, although back to the start, we are still on the board. This is not William's own old bowel. This is a healthy bowel that looks great on the endoscopes but has just got a little unwell and needs some time to recover. I just hope we don't meet our nemesis snake again on the way back and struggle to get past that 15 mls per hour!

Seeing things through different eyes

2010-06-04T21:11:00.003+01:00

Wow, I have neglected this blog! I changed the name to something exciting and then didn't come back again. Sorry. I will attempt to do better.

Needless to say, we've been busy! I have been very busy writing features for various magazines. I have a real-life health feature in this week's Take a Break (available until Wednesday) and have more due to appear in the same magazine in the coming weeks, as well as Grazia, Cosmopolitan, Mail on Sunday YOU and Woman Alive. Next week, I aim to start a new blog as a companion to my writing. It will contain some 'behind the scenes' commentary on some of the features, together with snippets from press releases and my research etc. I promise to keep this one going a lot better than I have of late at the same time!

The biggest family news since my last blog is that William has finally been diagnosed with Asperger's Syndrome. There is a lot to come to terms with and think about and this will, no doubt, be the focus of many blogs over the coming days and weeks. The main thing I want to say about it today is that I am fast learning Asperger's is NOT a disorder! It's a different way of perceiving the world. William has a higher than average IQ, is creative and very funny - so funny, I think he should be a comedian! He is very intuitive in some ways but he is also has obsessions with things, especially Thomas the Tank Engine and 'disasters', likes things to happen in a way he predicts and struggles with the unpredictable nature of human social contact. He is a walking encyclopaedia on his 'chosen specialist subjects' and can read as well as his 10 year old sister. He has a photographic memory for words and only has to be told a word once and he has it. He would read as well as me if he was told the words, but, of course, wouldn't understand the content of 'The Girl With The Dragon Tattoo.' One of William's biggest challenges is that he is very sensitive to sensual over stimulation. In fact, over stimulation is the wrong word. It's not just that sound is louder and colours brighter. Some children with Asperger's and other forms of autism can actually feel noise as pain and I wouldn't be surprised if Wills feels the same, especially the kind of noise that vibrates. William is very stressed at our church and I fear we may have to find one that doesn't have the bright lights and vibrating organ we have. You can't simply expect him to behave if the environment is physically uncomfortable. Getting the balance right between normal childhood naughtiness and where he really is too uncomfortable will be a challenge. One thing we have already learned is that he can't cope with stopping an unfinished game or TV programme. He really gets very stressed. It's much easier on everyone to give him enough notice of bed time or going out for him to finish his activity and since we've adapted our home life to include that it's all been a lot easier here. I'm looking forward to finding out more ways of dealing with the more challenging aspects of Asperger's - especially how to cope with his 'melt downs.' We had a few of those today when I had to stop a game, for example to change a leaky bag and I have the pinch marks on my arm to show how distressed this can make him. He's always sorry after he's calmed down and doesn't want to react in that way.

Along side his Asperger's, we learned this week that William has delayed cognitive processing. This means that it takes him longer to respond to an instruction or a question. All the small bowel transplant recipients are showing the same and the team now believe it's due to dependence on the artificial, intravenous feed, TPN, when the brain is still developing in babyhood and toddlerhood. William will need longer to complete activities in school and for exams etc. It is heightened for him because he always comes back with complex and complicated responses to things and likes to be funny. It takes him a bit longer to put all that together. This is something else that is very important and useful for us to know about. It's sad that those years when he was so unwell have led to some impact on his development but it's a minor one and to be expected really. As with the Asperger's, my job now is to teach him to make the very best of his talents and abilities and how to cope with his differences and adapt around them so he can make the amazing contribution to the world that I know he can. I wouldn't want to change anything about William. He's a little character and his differences are a big part of what makes him that way.

Broadening our horizons

2010-04-25T18:14:00.006+01:00

Do you like the new blog title? When I started this blog, our lives revolved around William and it quickly became a blog centred around life in hospital and sharing the daily news about his illness and fight back to life after transplant. I have talked a lot about the journey I, Hope and Ellie have been on with him but life is about so much more now.

It's very easy to get stuck in a rut when you have a child with any kind of additional need. Life can be exhausting and, with autism of Asperger Syndrome, it can seem easier at times to just let the child get on with their routines. This isn't good for anyone and this spring, our first home together and with Wills out of the isolation he was this time last year during the early days of his transplant recovery, I am determined to get us all out doing new things and meeting new people. We all need to broaden our horizons - hence the new blog title!

William's spiky ball

With William, you just have to get on with things, support his anxieties but throw him in the deep end because, with the right care and help to feel safe, he'll enjoy himself in the end. I did that literally on Friday and took the children swimming for the first time ever together. Wills swims at school but had never been in a busy public session before. It won't be long before he goes again. He's a natural water baby. Once he knew his arm bands would hold him up he was determined to move about independently and even had his face in blowing bubbles. It was so lovely to be doing something together that so many families take for granted. With the Swim4Life programme, the children can swim for free and pool membership is free for me on tax credits. All this means, we can enjoy the pool for just over £1 for the family. We'll be doing our best to go once a week.

On Saturday, we joined in with the first session of a new local arts project 'Life In London.' This will comprise off seven sessions over the summer, with activities to do together in between. The resulting work will be exhibited in Croydon. There is a project blog here so do go and have a look. Over the coming days, there will be some photos of us all taking part in drawing activities and a montage of images we took in a photo treasure hunt. There is plenty of space for more families to take part so, if you're in Croydon, do join in the fun. We'd love to meet you.

I knew William would find it difficult to settle and participate in the group. Group work at school is something he finds very challenging and he will often play at being asleep or stay silent when he's asked to talk to a group. He was especially upset because getting the tram into Croydon means shopping, not walking up to the Clock Tower to do art. This was a big change in routine, something he finds difficult. As I predicted, Wills wouldn't join in the hellos and staying on my knee, burying his face in my chest. He eventually began to peer towards the group more and more so I encouraged him to sit on his own chair. Hope had decided to play 'just a minute' so I suggested Wills spent a minute telling us all about Thomas and Friends. That did the trick. The minute Wills had held court with the group and entertained them by getting all the engine's numbers wrong on purpose, we were off! William joined in with some lovely art activities doing doodle patterns. I was really surprised. It was lovely seeing him do something completely different and being so relaxed and happy doing it. I got a fascinating insight into how he perceives things during the next activity. We had to feel in a bag and draw what we felt. The bag had smooth, bumpy and spiky balls and, while we all tried to draw what the object we felt must have looked like, Wills recorded what he felt. The picture above is a spiky ball. The one below is a smooth ball. I find it fascinating to see what he's done. It is bringing the developmental and cognitive psychology I studied and taught out from dormancy and getting me thinking.

William's smooth ball (no help was given at all)

William was really entertaining and, often, insightful. I feel more and more that the Asperger's syndrome is not a disorder. It's just different and deserves to be understood and embraced by others. Hope and Ellie did some fantastic drawings throughout the day and we all felt inspired to carry on exploring art together. We will certainly be doing all the activities asked of us between sessions. We want it to be a spring board into new activities we can join in together regularly.

We rushed off from the session to the church one of Hope's friends goes to. Her Mum leads a lovely monthly event called 'cafe worship' where people share tea, sing choruses, pray and listen to speakers. This month, Hope and I were invited along to talk about Wills and organ donation. Hope has been asking her friends to invite her to youth groups, churches and any other suitable event and is doing a big assembly in school on Friday. She is quite the campaigner these days. Hope did really well, I was so proud of her. Wills was good all the way through and Ellie coped very well hearing us relate what was a very difficult time for her too.

From cafe worship, we rushed home to do some filming. I'll tell you more about that later in the week but, once again, my children were super stars. Wills coped really well with disruption to his routines and enjoyed having more people around to entertain. Having settled Wills to bed, the girls and I were chilling with Britain's Got Talent when the door bell rang. It was the guy who had filmed us. I asked what he'd forgotten and he said, nothing, something was bugging him. He knew that he knew me. I thought he looked familiar but was astounded when he said that I'd been one of his lecturers when he was a student at Bath. That's the first time I've ever run into anyone I've taught. What a small world!! It was even smaller yesterday as one of the girls who organised it grew up just up the road and another was someone I met at Downing Street at the Downing Tweet party.

We were meant to be going to London today to cheer on those running for the fantastic Starlight Foundation and, much as I really wanted to, Wills needed down time today. He was fantastic yesterday but you need to be realistic pacing children like him. Not only does he get physically tired but he gets very emotionally tired. We all broadened our horizons yesterday and Wills especially. Today, he needed time to relax playing with his engines and watching his CBEEBIES programmes. I was pleased when he came to me to play some drawing games based on yesterday. He did hold what he learned. Days like that will open his mind and stretch him but they are stressful for him too and I need to remember that.

Feeling Concerned

2010-04-11T22:57:00.002+01:00

From the very first moment the word 'transplant' was uttered as a potential option for William, we were told that no transplant comes without complications and that it isn't a golden cure. Living with a transplanted organ, especially one as complex as the bowel, is a chronic health condition in its own right. William depends on a daily cocktail of medications to keep him alive and we were told there would be times when things don't go as well as others. William had a lot of early complications and his bowel took a while to get working properly but, once it kicked in, we never really looked back. We had the odd little bumpy day but nothing too worrying. The main concern was always William's stoma. He has no colon so has an illeostomy, where the bowel comes through the skin to enable waste to drain into a bag. William's stoma has been prolapsed for over a year. The bowel is an internal organ and wasn't designed to hang out of a lively five year old and so it began to get damaged. We knew it would need fixing sooner or later and, last week, that time came.

William and I have been back in Birmingham for the last week. He now has a very tiny discrete little stoma which is fantastic. All went well. William is sore and tired but that is to be expected. The bowel hates being handled. At first it pulls a total strop and doesn't work at all. Then it pours. William's bowel is at the pouring stage at the moment. I have been reassured by our team that it will settle but it is hard to relax when you've been there before and it didn't improve. Old memories are hard to ignore. I'll be relieved when things start to normalise again. William is hundreds of times better now than before transplant - a different child! The little set backs are worrying though as you are never totally sure they won't lead to anything more. We've been so lucky over the last year as Wills has been so very well and stable. We've got used to it and it's upsetting to see him a little more vulnerable than he has been. Some of the friends we've made over the last couple of years are facing much bigger hurdles and complications and they are very much in my thoughts now. This is nothing compared to what they have to get through.

It is fantastic to be home from hospital but I do tend to feel a little nervous whenever we come back with things a little bit different and some recovery still to be done. I think it feels even more scary when there is just one of you. I do call Paul to sound things out when I'm concerned about Wills but the decisions and responsibilities totally rest on my shoulders now and I have to juggle the girls' needs in there too. It's not always easy. I find the practical things are easier on my own. I have a routine and, although school mornings are a bit frazzled, it works. The emotional worry can be hard though. At the end of the evening, it's just me and there is a lot of time and space to brood. The girls have been at Mum and Dad's and are now off to their own Dad's for a week so a little concern over Wills is coinciding with a lot of quiet evenings.

This blog has talked a lot about post transplant complications and worries. These are all normal and part of the journey. It is a journey and one that would not have been possible without our wonderful donor and her family who said yes when asked during the darkest time in their life if they would be willing to save other people's lives. Had they not have said yes, we wouldn't have had a transplant and a William to be worried about. I was very distressed today to read this Of course, my heart goes out to anyone who may have agreed to donate all of their precious loved one's organs and are now being told there were specific organs their relations didn't want to donate. I am truly very sad for them. However, these numbers are tiny and it is a specific administrative problem that has now come to light and is being sorted. I think the reports have been blown up out of proportion by those who are rubbing their hands with glee at the thought of being able to try and blame the government for something so upsetting and emotive. To anyone using this situation as a part of their election campaign, I want to say how worried I am about their tactics. There are 10 000 people on transplant waiting lists. Of those, 1000 die each year - 3 a day! The way this report has been reported has created a real danger of putting people off registering as an organ donors. Going on to use it to undermine the work the present government has done in promoting organ donation is only increasing this danger. This issue is not something that I feel should be bought into the negative campaigning the Tories and their supporting papers are doing. If people are deterred from joining the organ donor register or saying yes if asked about donating their loved one's organs then people will die. The lovely Tor is on GMTV at 6.45 tomorrow morning to talk about her wait for a double lung transplant and do her best to make sure this doesn't happen. Please tell your friends about her. Tell them about William who is only here because of our wonderful donor. Tell the how grateful we are and how we think of her and her family every single day. Tell people not to be put off from saving lives if they or their loved one's were to die and ask them to sign the register. A lot of people are very upset and worried about the impact of this report. Please help me to show them they don't need to be.

Good Friday and Word Autism Awareness Day

2010-04-02T21:15:00.002+01:00

One of the most moving things I've ever seen was the Good Friday drama and walk of witness we watched in Croydon today. We didn't follow it all because it would have been too much for William but we caught the final section in the city centre. We arrived just as the procession did. Jesus' bloodied dead body was carried, swathed in black to a slow drum beat. It was incredibly emotional and the most faith affirming experience I've had in a long time. I've struggled to take time out to prepare properly for Easter this year. I've been somewhat distracted by William's hospital admission being on Easter Monday. It's somewhat hijacked Easter. I'm glad I had that powerful moment today. I always think you have to experience something over Holy Week and Good Friday to really appreciate Easter for what it is. I've had that now and, even though the next few days will be dominated by preparing William for hospital, I will feel that new life and revival that Easter brings.

As well as being Good Friday, today was World Autism Awareness Day. William asked my today why they crucified Jesus. One of the reasons I gave was that they didn't understand him and so were scared by them. There is a parallel there for William. He is charming, funny and engaging and everyone who meets him adores him. But, there are elements of his behaviour that the world doesn't understand. His rigidity, his obsessions, his utter panic and distress when things don't go the way he anticipated look now like an immature tantrum but, as he gets older, they may seem threatening, even frightening to people. People will think William odd. He's not odd. William just sees the world a little bit differently to most others. He sees things in back and white and struggles with things that don't fit rules and structure. Like many people with Asperger Syndrome, William is extremely intelligent and gifted and has a huge amount to offer society. The greater society's understanding of autism and Asperger Syndrome, the easier it will be for William and those around him to communicate and appreciate each other. I'm grateful for those who have supported today. It gives me hope that William will grow up in a world that understands him and are prepared to adapt to his needs. He is certainly working very hard to adapt to the needs and expectations of those around him so it's only fair we all try a little too. Please visit the National Autistic Society and learn three things you didn't know about autism.

William wasn't moved by Good Friday at all. Our curate told the children the story of Jesus' death, explaining it's a sad story. William turned to me and said;

"But Mummy, it's not a sad story at all. Jesus had to die didn't he. It had to happen that way."

When I asked why, he replied;

"Because he had to die so we can see him when we die."

Maybe sometimes just accepting things and not looking further than the black and white is the best thing. You could read several theology books focusing purely on that William had summed up perfectly in two sentences.

Being flexible

2010-03-27T21:57:00.002Z

A few weeks ago, I booked for Hope, Ellie, William and I to go on our first ever holiday together - the first time we've been ever to get away in six years. Thomas the Tank Engine is coming to Butlins and I know a little boy who adores Thomas and friends! I thought Butlins would be an easy holiday for the first with all the medicines and feed and, as I don't drive, we could get there easily by train and then have all we need on site. With everything booked for Easter Monday until the following Friday, I was devastated to hear yesterday that there would be a national rail strike that week. We'd be able to get there OK but the strike could prevent us returning home. I spent ages on the phone working out alternatives and came up with a contingency plan to stay an extra night if necessary. It would add to the cost but no 'spring of discontent' was going to ruin this special holiday!

Before William's transplant I would never have dared book anything any further than a day away. Every time we ever planned anything, he always ended up in hospital and we learned it was better not to set ourselves up for the disappointment. William is doing really well after transplant. The only thing that is causing slight concern is that the bowel that comes through his tummy to form his illeostomy has been prolapsed for quite some time now and has a few sores where the delicate internal tissue rubs on his clothes. [For any new readers, William's colon was removed at the time of his transplant but wasn't replaced. You can cope fine without a colon with the end of the small bowel being bought out through the skin to form an illeosomy] When we were at transplant clinic last week, we discussed the prolapse and our consultant said he felt it was time we thought about fixing it. He asked me to send a photo for him to discuss with the surgeon and then come back to me with a plan. I was surprised this morning to get an admission letter for William to go to Birmingham on 5th April for surgery. The day we were meant to be going to Butlins!

My initial reaction was to call the team on Monday and ask for this admission to be postponed. Then I thought about it a bit more. Being on my own, I can't cope with these admissions without Mum and Dad being fantastic and looking after the girls and they are away for 3 weeks from the end of April. Ellie has her SATS in May and then will begin her preparation for secondary school. It would be awful for her to be away then and miss meetings and visits to the new school. The girls are looking forward to a week with Grandma and Granddad and they're off to their Dad's for the second week of the holidays. If it wasn't for the fact we'd booked our holiday, this admission is actually perfect timing. Thankfully, a quick call and our holiday was rebooked for the first week in August. Thomas won't be there but I think it will be better for William overall as his plaster casts will be off so he can go in the pool and play on the beach.

With the holiday sorted, I'm now planning how I'll juggle work. I have lots of fantastic stories that need working into pitches so I'll get as much as I can worked up and pitched to editors this week. Hopefully, some will be commissioned and I'll be able to do the interviews, write them up and write features while we're away. The 3G reception is pretty ropey at the hospital so I'll have to negotiated an hour or so away from Wills to find an internet cafe if I need file any copy to meet a deadline. A couple of new DVDs will help me win a few hours. For the most of the week, I'll concentrate on my novel. I think one big push during the evenings while Wills is asleep and I'll have the first full draft finished. I can also research some more agents and work out a strategy towards getting a publishing deal by the end of the year. There are two main reasons why I'm a freelance writer. I am passionate about writing and telling stories and the flexibility of freelancing is essential to my life. My work can be worked around William being home if he's unwell, hospital appointments and admissions. I'm lucky this time to have a week to manage the work I have on so I cam make it easier to take with me to the hospital and assess what can be realistically done from there, what needs to be done before we go and what I can leave for when we get back.

I'm pretty confident I can juggle everything and not get behind during the week to ten day stay they've predicted. The girls will be fine for that long, and would have been away for half of the time anyway. I just hope William's bowel settles quickly after the operation so it doesn't drag on. At least our new holiday is several months away so we should all be back on track by then.

A day out with a gunman, a bag snatcher and a railway trespasser..

2010-03-25T09:02:00.008Z

Being a freelance writer can, at times, be a bit lonely. Most of my time is spent tapping away on my laptop at my desk at home. It's great that most of my writing is about other people because I get to talk to interesting people most days but there are days when it's just me and the keyboard. I very much welcome days that take me out and about, meeting people so was very much looking forward to yesterday. With a couple of coffee meetings during the day and a social gathering of fellow freelance journalists from the Journobiz forum in the evening, I spent most of the day going backwards and forwards in and out of London. I knew it would be hectic but it turned out to be a bit more eventful than I'd bargained for.

Over Christmas, the UK security alert status was set to severe, meaning we are, apparently, very likely to experience a terrorist attack at the moment. We were given that information, not to ruin our Christmas and fill us with a sense of fear that 2010 will see another 7/7, but to let us know that we all need to have our wits about us. A 'severe' threat level tells us to be on the look out for anything suspicious and unusual and be ready to respond quickly. Transport hubs and stations are always high up on the list of potential terrorist targets. After 7/7, a lone suitcase made us feel uneasy at the very least. Now, I'm not even sure I would notice. We so quickly become complacent. So much so, it would seem, that even when sat in Starbucks outside Victoria Station, witnessing police rushing around evacuating and blockading an area surrounding a bus, I was more interested in knowing what was going on than getting the heck away. Even in these times of high threat, my curiosity far outweighed any fear. Even when two police officers came in and told us that there was an incident involving a marksman on a bus just opposite us, people were keen to carefully gather their belongings and put coats on before legging it. We've become so close to false alarms that my thoughts were that someone was about to become very embarrassed to find their lost rucksack at the centre of such a circus. It wasn't until I got home that a good old google search revealed that a few feet and a panel of glass was separating me from a man wielding a gun! Thankfully, the police were quick to get the situation under control but it could have been a lot worse. I have to admit, the fact we are on a state of alert suggesting a terrorist attack is likely completely slipped my mind, even though I was in the middle of what could have been that very event unfolding.

The threat of terrorism isn't all we Londoners have to think about as we go about our daily business. Another we are constantly being warned about is pickpockets and bag snatchers. I like to think I'm pretty careful on this one. I hold my bag close to me on public transport and am paranoid about my iPhone - I constantly check it and keep my hand on it when I have people crushed against me on the tube. Yep, I'm vigilant about this one...until I'm deep in a heart to heart over a glass of wine. I was having a lovely evening, meeting up with fellow writers I've met on the Journobiz forum. One of the things I find so amazing about this group of people is how much we encourage and help each other, sharing contacts and helping each other with case studies. Freelance journalism can be a lonely game and it's fantastic to find colleagues and friends among others sitting at home bashing out words on the keyboard. Someone had just shared a useful contact with me and I was keen to scribble it down straight away. I was sitting at the end of the table and my bag was right by my feet. Or was! How on earth someone managed to sneak up to our table and steal my bag without any of us noticing I don't know! We searched and searched but it was gone, together with my cash, card and ticket home. My overwhelming feeling was one of total embarrassment with having to rely on people I'd only just met bailing me out so I could get home. They were fantastic and, of course, I'd have done the same. I lost £30. Not much in the grand scheme of things but that's a lot of Primark clothes and Lush goodies to my two girls and would have got William 5 of his treasured Thomas engines. Worse is the fact that someone took my stuff. The bag I chose for myself, my diary, a magazine, a notebook (empty thank goodness) and a pen. Worthless to them and, no doubt, slung in an ally in Richmond somewhere by now, but my personal things. For once, William's situation and my need to be within easy reach of his carer, saved the day. The thief didn't get the main prize - my iPhone was safely on the table!

I felt really bare going home with no bag at all and had a bit of time to feel that way too. London had one more thing to throw at me. All trains from Victoria to East Croydon were delayed...because of a trespasser on the tracks in Brighton!

The Global Dinner Party

2010-03-11T09:46:00.004Z

This Monday saw the 100th year of International Women's Day. All over the world, women got together to form an alliance of support for those facing challenges. Many organisations led events focusing on their own issues, issues including freedom, justice and health. Us women really can make a huge difference when we get together to make a point - just look at the huge political interest in Mumsnet in the run up to the election. My previous blog about the amazing women campaigning for bone marrow donors is another example.

I spent Monday being a busy journalist and so missed the opportunity to join other women on bridges over The Thames, to show my support for those whose lives are affected by war. As this was going on, I was busy interviewing the inspirational Jonnie from the Haiti Hospital Appeal . This was the only time he was free but it was perfect timing, given that their amazing work was inspired by the 75% of Haitian women who give birth alone in a country where seeking health care is "impossible."

In support of Jonnie, all at the Appeal and those women whose lives they are dedicated to change, I decided to play my part for International Women's Day in joining the White Ribbon Alliance at their 'Global Dinner Party.' All across their 140 member countries, women joined together for fun, food and fellowship and to think of those the Alliance reaches out to help. Every minute, somewhere in the world a woman dies in childbirth, 99% of these women are in third world countries. These are the women we were thinking about throughout our evening. Every single woman who came to the party has their own incredible story. I didn't set out for that to be the case, it simply reflects the circles I move in since I had William. For many of our peers, we are women who have been through unimaginable challenges but we all came together to share an evening thinking about those who needed the health care and support we had, or our children had, in order to be alive today but just happened to have been born in a country where that level of care just doesn't exist. We may have been through our own difficulties but we are the lucky ones!

With William living in and out (mostly in) hospital up until coming home from his transplant a year ago, I haven't organised anything like this for about four years! He's been home for the last year but it has take a while for us all to resettle and allow ourselves to take it step by step back into life again. I just hadn't really thought of inviting a group of friends round. I guess I was so far out of that mind set so I'm really grateful that this inspired me to just do it. I will be doing it again very soon! Because it was been such a while, it wasn't until 3 hours before the party, just as our local shops were about to shut, that I realised I didn't have enough bowls and glasses. I am now fully stocked for eight dinner guests so there has to be a next time.

We enjoyed our food and a good natter. Only two guests had met each other before. In fact, not only met each other, but one gave her friend an incredible gift - one of her kidneys! We chatted about that for a while and went onto debate the ongoing question as to whether we should have an opt in or opt out system of organ donation. Another of my guests donated her Mum's organs when she died so, between us, we had a lot of thoughts, feelings and experiences to share on this.

While organ donation was a big issue that every woman in the room has experienced, we were keen that the evening didn't become dominated by it. We are all grateful for the second chance we, our family members or friends were given, or gave, through organ donation but the night was for thinking about those who don't even get a first chance at life.

After a yummy dinner of Chilli, Sue's lovely milk jelly (that was a staple dinner party treat in my childhood reminded me of my Mum and Grandma - very appropriate), coffee and some of the really gorgeous mini cup cakes from my favourite Love Bakery, we sat down to watch a video. I wanted to focus our party on the work being done by the Haiti Hospital Appeal. There are lots of videos on their website and You Tube showing what they are doing now with the children in their respite centre, their clinics and their work with the earthquake injured. I wanted to go right back to the beginning, in 2006, to when two amazing 21 year olds arrived at Haiti and saw first hand what healthcare is like there. The video we watched is here We watched in silence, amazed at what we were seeing - not only the level of deprivation, the grief for Julia and her family, but also the inspirational response shown by two young men. I will come back to the Haiti Hospital Appeal again soon to talk more about these amazing guys.

We could have sat and watched all the videos the Appeal have on You Tube and I'm sure will be doing over the coming days. I hope you will too. If you do, please go here afterwards and do your bit to help them.

The Haiti Hospital Appeal are a partner of the White Ribbon Alliance, and having watched such a moving piece of film, we decided we wanted to do something to support them. We decided to do a 'fashion swap" - exchanging bits and pieces we no longer wear and paying £1 for each item we took. It took us a while after the film to want to do anything other than just sit, think and talk about what we'd seen but, when we did, we had a lot of fun looking at each other's bits and bobs and picking out what took our fancy.

International Women's Day is over but we don't have to stop thinking about women all over the world who live, work and bring their families up in the face of challenges we could never really imagine. Three women who wanted to be with us, but couldn't are women who are bringing up children with very complex and life threatening conditions and another for whom, every day she wakes and breathes, she's defying all medical expectation. We all face huge challenges to get through the day but we know we have a home, food, heating, clothes and health care to enable us to get there. There is always space in our lives to remember and do something, no matter small, to help those who face the same challenges as we do but without all the things we have in the UK, the things we hardly even notice sometimes because we take them so much for granted.

Strength and Inspiration

2010-03-02T23:54:00.005Z

Imogin, aged 7

I have so many things I want to blog about, so much is happening in life right now and there is lots to muse over.

I'm sitting up tonight, waiting for the right time to switch off William's feed and swap if for water, and then to switch off the water. It's going to be a long night and a very early start, leaving at 6 to get to hospital for 7 so he can have a minor operation on his feet. The procedure is minor but poor Wills has been through so much in his life so far and is terrified of 'special sleeps'. He hates the way the gas makes him feel and the sore throat he always wakes up with.

Our children are so brave. I have met a lot of children and families in hospital over the last 5 years. A few years ago we met Imogin and her Mum, Sheila. Imogin had just been diagnosed with Leukaemia and Sheila was in a state of shock and disbelief. We bumped into Sheila and Imogin from time to time when both children were in our local hospital and at a christmas party at out local hospital. I hadn't seen them for a while, but often wondered how Imogin got on. I assumed she'd have been treated and was well again. Over the last 6 months they started appearing in our local paper, appealing for bone marrow donors and then, in January, Sheila was in the paper breaking the heartbreaking news that Imogin had passed away. She was 7. I was planning to write to Sheila via the hospital.

On Saturday, I had arranged to meet with the lovely L for coffee. Shortly before leaving, I read on twitter that there was a street theatre team out in Croydon. Only 1% of those on the organ donor register are from Southern Asia, meaning many have to wait twice as long as white people for a transplant that depends on tissue match, such as kidneys. There is a vibrant campaign on at the moment to address this, using street plays and faith road shows to promote organ donation among the Asian community. You can read more about the campaign, and find out if it's coming near you here . I suggested L and I met to watch the play. It was really entertaining and effective in addressing the myths about organ donation. I think real life stories are incredibly powerful but will be looking to incorporate some of the ideas in talks I plan to do. It was really refreshing to see a different approach to things I've seen and taken part in so far.

L was surprised where the event was taking place as she had heard it was somewhere else in the shopping centre. As we wandered around, we found out why. At the other end was the event she had been told about, a pop up shop raising awareness and registering people to donate bone marrow and enabling people to give blood on the spot. It was being run by aclt, a charity highlighting the lack of bone marrow donors in the Afro-Carribean community. L and I went along and there I saw a familiar face - Sheila was out, just 10 days after burying her daughter, to raise awareness of the lack of bone marrow donors and encourage people to sign up to save the lives of other children. It was lovely to be able to give her a hug and share some memories. She is so strong, a truly amazing and inspirational woman!! She is determined to raise awareness of the fact that children from the Black community have a 1 in 250 000 chance of getting a match from a registered donor should they need a bone marrow transplant. White children have a 1 in 5 chance! What a huge disparity! I promised to do what I can to help them in their campaign.

L and I came away feeling incredibly refreshed and energised from what I'd seen both sets of campaigners do. We are still talking about Sheila and the other amazing people we met in just a couple of short hours.

Now, as I'm preparing myself for another day of procedures with Wills, thinking about how brave he and I will need to be again, I am drawn to a poem Imogin wrote just a month before she died. This, and the image of Imogin above, comes from the aclt website here and the words are written in exactly the same way as Imogin wrote them.

'Help me Heel me'

Dear Lord

Heel me I pray make me sing, dance and be fine.

Help me eat I will help mummy be strong and I will get out of bed and not be depressed.

And on monday the 4th I will ‘whoshame’ (Ghanaian term which means ‘I will show them’) the hospital and my mouth will be open.

And I will go out with mummy to show's!

and go to school.

I WILL NOT DIE!! I WILL NOT DIE!!

I WILL LIVE FOREVER!!!

I WILL DIE NEVER

AND I WILL BE SUCCESSFUL WITH MY LIFE.

Ritten by Imogin

age 7

Cancer fighter

A Year Home Together

2010-02-23T09:19:00.004Z

Wills has been home after transplant for a year now! It's been a year since we've had any of those terrifying days, juggling a blue and gasping child, a phone call to 999, another to a friend to arrange for the girls to be picked up immediately and another to Mum asking her to get in the car and get the girls from whoever was holding them for me. It's been a year since we've had to step over the sets of bags in the hall, ready for any emergency - and one packed for transplant. Strangely, the post-it note, holding the check list of all the things that had be taken to the hospital, fell off the front door last week. I gave it one last glance and threw it away. We've had a few close calls over the year, two in recent weeks, but we've (so far) managed to cope at home when Wills has been ill with the inevitable colds and bugs that can be so dangerous for a child whose immune system is suppressed by drugs to prevent their body from rejecting their transplanted organ

So, one year on, where are we all? Wills is thriving. The main focus of care and therapy is his physical disabilities and Asperger's Syndrome at the moment. From time to time, I do get nervous. I wonder when the bubble will burst because it will. One day, we'll wake up to a major post transplant complication that will send us tumbling back, hopefully temporarily, to the world of Hickman lines, TPN and long term hospitalisation. It could be rejection or a big infection or even a (treatable) type of cancer that is quite common in transplant recipients. Even after a year of relative stability, it's hard not to go into a tailspin at the first symptom of something. During the last week of term, William's school bus escort arrived at the door telling me to bring a buggy up because Wills was asleep and they couldn't wake him. My mind was immediately transported to those 999 days. He was poorly but only really like any 5 year old can be and nothing that a dose of Calpol and a few cuddles couldn't sort.

You don't snap out of what's gone before overnight. We've just had a fantastic half-term break - the best we've ever had. We went out as a family several times and had lots of fun and laughs. Hope, Ellie and I went out together on a day Paul had William. We ate out several times and were all very relaxed with each other and with life in general. I think it's taken us a year to reach that state. It's taken that long for our minds to settle from living on the knife edge when life and death emergencies could happen suddenly, without warning at any moment, and so often did. That, coupled with the gradual decline in William's overall health was difficult for us all to live with. I've said it before and I'll say it again and again - William's wonderful donor and her brave family did so much more for us than save his life, they saved our family. They saved us all really.

The girls are settled at school and we're all looking towards their futures and what they will be. Hope takes her GCSE options this year. Her interests are in subjects like geography and history and we've been wondering what she'll do with her life. Following the earthquake and the writing I've been doing about the Haiti Hospital Appeal she's now decided to look towards a career in third world development. That will be a stark contrast to Ellie's dreams of becoming a fashion designer. We made a pact to support each other in all we want to be and help each other realise our ambitions - including mine. It's what we'd be doing anyway but we made an extra special promise to each other. The Milne girls, all three of us, mean business.

I'm still at the stage of rebuilding my career. There are still a lot of bits and pieces that need to be bought together to form a clear plan. Right now, I feel my career needs some strategic thought, planning and self-imposed deadlines etc. I need to be more business like about things. To have a 'mission statement' and make decisions on what I do and don't do based upon that, as well as helping to pay the mortgage and feed my children of course! The first step in 'branding myself' I guess is that I've revamped my website to give it more focus and will put clippings to my work on there as and when I can.

I was going to talk about the whole love and dating issue here too. In fact, that is what this blog was going to be about. There's no new big news, I'm still very much single! It was just going to be some musings about how it works, (or rather doesn't) when you're working at home, doing something as isolating as writing and have three children, including one with complex needs, to look after, not to mention approaching a delicate age!! How does one find that special person again? Sometimes I wonder if I really want to. Some days I feel really lonely and want someone who is there for me, that special person you tell as soon as something big happens in your life. Other times, I think I'm best off on my own and don't need or want a man in my life again. I'm certainly more creative and productive when single. For now, it's family first and career second. My next blog will be about existing in the social world again after so long away from the 'real world' existing in hospitals. I'm sure I'll touch on love and the dating game....

Thomas and the travelling milkshake!

2010-02-18T22:31:00.005Z

I've mentioned it and skirted around it in previous blogs and today, I'm addressing it straight on the nose - Asperger's Syndrome!

William is a very clever little boy who was reading fluently at the age of 4. It's easy for him as he has a photographic memory for words. He's fascinated with facts, he stores them and recites his treasured collections over and over again. He can appear someone obsessed, especially with Thomas the Tank Engine and his current interests - natural disasters, planets and 'A Christmas Carol' (still in February!) People often say he's like a mini adult. He talks in adult sentences with a rich vocabulary. Not surprising for someone who has spent his early childhood in hospitals, isolated from the other children, with only adults to converse with. He can be anxious in social situations, especially with other children who have a tendency to be unpredictable. He likes routines and likes things to be ordered. Anyone who has found this blog because of today's title will recognise him, perhaps in their own child. Wills hasn't yet been formally diagnosed but everyone involved in his care believes he has 'High Functioning Autism or Aperger's Syndrome. We have known he is 'different' for a while but it's hard to tease out what is just down to a very challenging start to life and what is a biological difficulty in its own right.

When people first started using words like 'Asperger's' and 'Autism' I refused to listen. I refused to accept it. After all, Wills is charming, funny. He loves cuddles (OK, not always but several times a day). He does understand emotions and has some level of emotional empathy, although, I am learning that he doesn't really understand quite how another person got to be in the emotional state they're in or quite what he should do about it. In many ways, I initially found the idea that he has Asperger's more difficult to cope with than the fact he had intestinal failure and needed a transplant. This is all down to society and the way people who are 'different' are viewed and accepted. Wills is 'different' too. He's not less able than other children. In many ways, he's more able. In others, it will take him longer to get there but he will, eventually. He can adapt, especially if people adapt to him as well.

We're having a great half term holiday. One of the key reasons to this is that we are all learning to adapt to the way Wills is and the way he sees the world. He, in response, is adapting to the world he lives in. This equates to much better harmony among us all, less stress and more fun together. We are learning to read the signs that tell us William is over stimulated and needs a time out. We know that shouting at him, no matter how cross, is pointless at best and distressing at worse. Thanks to his fantastic teacher, who has a particular interest in Asperger's Syndrome, we're also learning to use resources to help William. One of the things that is particularly difficult for him is disengaging from something, be that a task, play time or an obsession. On Tuesday, Wills and I sat down and made a visual timetable with pictures of all the things he does in a day on velcro. At the start of the day, we talk about what we're doing and stick everything on the chart. As something is finished, he takes it off. This really helps him to move onto the next activity but, if he's still a bit stuck and upset, we pull out something else in our 'toolkit'. We have 5, 10, 15 and 30 minute sand timers. They are fantastic. If William isn't keen to move on we negotiate which to use and allow him until the sand is gone before having to stop. These can also be used in anticipation that he won't want to move on from and activity and are great for 'timeout'. In fact, earlier today in a very fraught moment, Wills spontaneously took his timeout picture, stuck it on the chart, took his 5 minute timer and sat in the corner of the room on his big cuddly giraffe! He was lovely and calm afterwards. Children with Asperger's struggle when plans have to change and we've found the chart great for this. He simply moves the pictures around and has been happy to rearrange his day that way.

One of my tasks for the weekend is learning to write 'social stories' where you write an individualised story around something the child finds difficult and needs help with. There is a prescriptive method and the stories have to be entertaining enough to read over and over again. Thankfully (in this instance at least) William likes the same stories again and again.

Tomorrow, we're all off bowling and having lunch out. This means confronting one of William's biggest challenges. He hates drinking his milkshake anywhere other than home and school. This is special, nutritional scandishake and his only nutrition and fluid during the day so not an option! You know, sometimes you can miss the obvious, the simple things. I was thinking all the deep and psychological things he may struggle with drinking his drinks out and about. Is it the over stimulation, the unpredictable environment, the smell.... Last week I asked him, why I didn't before I don't know! Every time we go somewhere like McDonalds, I pick up handfuls of their wrapped straws for William's shakes on the move. At home, we have red, yellow, green or blue bendy straws. He doesn't drink his shakes out and about because he doesn't like the straws to be different or to have it from the tupperware cup! So, tomorrow, we'll take his straws and his cup. With summer on the way, the first one where we are really able to get out and about and, hopefully, away somewhere, I really hope this works. If not, one of my first social stories will have to be all about Thomas and the travelling milkshake!

Hope

2010-02-12T17:37:00.006Z

I really intend to blog more often this year and I will so please so check in more regularly now. I promise at least a blog a week and will aim for more.

This time last month I was anxiously waiting for news about Jess. I knew things had got a lot worse. I knew she was dying but I still hoped. I still hoped she would defy the experts and show some signs of improvement, even when all looked so bleak. I hoped right up until I received the text from her Mum telling me she had passed away.

I whiled away my time waiting news about Jess switching between facebook and twitter, keeping in touch with mutual friends, all equally unsettled and sad. My attention was caught by 'Haiti' in the twitter trending topics. In September, I photographed a 10K run a friend of mine organised to raise money The Haiti Hospital Appeal and, while there, chatted with one of the trustees about writing a feature about their work sometime. I clicked to find out why Haiti was trending and, finding tweets about the quake, switched on BBC News 24 to watch it unfold. About 15 minutes later, I received the news about Jess and my attention was diverted.

I'm currently halfway through a piece about the Haiti Hospital Appeal and it's the most humbling piece I've ever written. I've heard some amazing stories and it's something I can't just leave alone. I'll be following Haiti and the work of the appeal through the years to come and supporting and highlighting their work and the plight of that little country that was already broken before the quake struck. One in five children already died before the age of five due to birth defects caused by the fact that 75% of their mothers give birth alone with no access to healthcare. Thousands of children are disabled from birth, many of whom end up abandoned by parents who are unable to juggle their needs with the daily task of finding work to earn enough money to get food and water for another day. This was what Haiti was like before the quake. Haitians are used to injustice. They are used to having to get on and find food and water alone because aid from the rest of the world is scarce. This was life for them before the quake and this has made them a resilient nation. I have been told stories about individuals who lost several members of their family, their home and belongings and still came to work the next day. They did that because they had to. If they didn't, they wouldn't eat or drink. It's as simple as that. Just was I was clinging onto hope the night Jess died, so the Haitians live in hope that more aid will come and that the world will walk alongside them and will stay with them as they rebuild their country. The Haiti Hospital Appeal is bringing that hope to many. I'll bring you more stories over the coming weeks.

The Hospital the appeal funds is supposed to be a maternity hospital with a special care baby unit and paediatric ward. At the moment, the facilities are being put to use for all who need it but, in the long term, the hospital will focus on maternal and paediatric care. This is something that is very close to my heart as a mum who struggled with difficult pregnancies, resulting in 3 premature babies. Hope is all you have when your tiny, two pound, baby is born with lungs too immature to breath. Hope and trust that the medical team can offer the support until the infant matures enough to cope without high tech machines and specialist drugs. I find it so sad to think of the thousands of women all over the world who give birth to a fragile baby without any hope at all for their survival.

Today, I read the very moving piece in The Guardian outlining Gordon Brown's interview with Piers Morgan about losing he and Sarah's precious little Jennifer Jane. I read the piece with tears in my eyes. I have been so, so lucky. I was told about the danger of cerebral bleeds for premature infants. Twice a week, until they reached 34 weeks gestation, Hope, Ellie and William had head scans looking for any sign of bleeding. These were among the most stressful days for me when they were tiny. I remember vividly the anxiety waiting for the result and the huge sense of relief another week had taken us closer the the magic 34 without a bleed that could result in severe brain damage or death. For Ellie, this was even more of a worry as she had to have a drug to close a valve in her heart that had failed to close as she was born. The side effect was to drastically increase the risk of bleeding. Gordon's re-telling of the day he realised Jennifer was not going to survive struck a cord with me. I remember watching William get weaker and his need for more support from oxygen grow each day and just feeling this huge sense of intuition that he was in real trouble and wouldn't make it. I wasn't brave enough to question staff but was soon told of their own concern when he was transferred back into intensive care and onto breathing support. We were lucky that he was able to fight back. We were lucky that we live in a country that was able to provide specialist medical care and nutrition to carry him through the years before his transplant. We were lucky that our wonderful donor family said yes on another of the several days in his life that we have come terrifyingly close to losing him. So, so lucky. I hug my children every day and remember that. My heart goes out to Sarah and Gordon and others, among whom are many of my friends, who have lost a child.

It's not enough for me to just sit here feeling lucky though. I have to do something to help those that are not so fortunate. After William was born I went to work at BLISS, the premature baby charity because I wanted to make a difference for mums who had premature and sick babies and may not have been as lucky as I'd been with my three children. As he became sicker, I had to give up this job to look after him and live in hospital with him. Since his transplant, I have been campaigning for more organ donors and I know we are making a difference and saving lives and I will continue to do this. This work helps others to be able to enjoy the successful transplant story we have to tell but, as I have said in this blog before, our story didn't start there. It's fantastic that I'm now using my writing and journalism to highlight stories of mums and children who are not lucky simply because they were born in a country where there are no specialist medical teams, drugs and machinery to help them. It's a little contribution but it is something.

The more I research this, the more involved I want to be. Hope is also becoming very interested in this. She is about to take her GCSE options and thinking about a career based around her favourite subjects - geography and history, and her desire to work to make a difference for people. Today, we talked about working in third world development and she was really taken with the idea. She's hoping to do her work experience next year with a relevant charity or aid agency. If she does go down this route, how fitting that a little girl who is only alive because she was able to be placed on a ventilator as soon as she was born could one day be working to help other babies have the right to the same.

Time To Say Goodbye

2010-01-28T13:08:00.006Z

Yesterday, we all said goodbye to 'Our Jess'. It was always going to be a hard day. Hope decided she wanted to come and pay her respects to someone who has so greatly inspired her during her years turning from a child to a young woman. Hope had never been to a funeral before and I wasn't sure about her coming but Jess has been a big inspiration to her in formative years and that will last a lifetime. In the end, I decided she needed the closure a funeral brings as much as any of us who felt similarly about 'our Jess'.

Funerals are tough and you need your friends around you. For that reason, I was really pleased when the lovely Oli and Kati offered to pick us up from a station where their journey from Milton Keynes could intercept with one in easy reach of East Croydon. We met at Oxted, having passed some lovely country areas which Hope and I both said we should come back to one weekend day in the coming weeks, just to get away from it all and have a walk in the woods. We all really need that right now and I hope we get the weather for a day like that very soon.

Oli and Kati were perfect company for the day. We spent the journey to Westgate chatting about all sorts. Oli is a fellow writer and we've both recently read each other's work so enjoyed the chance to chat about a few issues that arose from comments we'd made. Hope was quiet, not quite sure what she should be anticipating when we got there. As we drove into Westgate, we were silenced by the sight of Jess's beautiful glass carriage pulled by two white horses with pink plumes getting ready outside the undertakers. We had a good journey in and had arrived early. I had been called and asked to do a quick interview/tribute to Jess for Meridian TV and, after being reassured the family knew that they were filming Jess's arrival at the church and were happy for them to talk to people, I agreed. Anticipating tears, I had no make up on and, despite Hope's strong suggestion it was a silly idea as I didn't have any waterproof mascara on me, decided to put a bit on when we were on the train. In a moment of parent-child role reversal, she did have the 'I told you so' as Jess came into church and my mascara leaked into black rivers down my cheeks. Future note to self - don't bother with make up at a funeral again.

Even with the interview to do, we were a bit early so went for a drink in a little tea and beach shop on a deserted and cold looking sea front. Hope and I thought it would be nice to come back in the summer. What was so lovely, and important about the day was that we found little things to laugh about and things our memories of Jess told us she would have giggled at. She will be remembered for laughing herself into coughing fits so often. I chose a hot choc and realised it was made of milk so a full big mug of milk, not sensible as I'm a tad allergic. I also fancied battenburg cake, just like Grandma would have had on a sea front, probably in similar weather. There was something comforting about that and we also shared a few laughs.

I was worried I'd get through the little interview but managed to stay composed and say what I wanted to about Jess. We met with Emily, Matt, Holly and her parents, Richard, Aunty P and others I knew from Facebook, outside the church. We were all muted but pleased to offer support to each other. Then we went into church and waited for Jess to arrive. The anticipation built and I felt sorry for those who came in at all later than most as everyone turned round. The door was really clunky, something else we found amusement in.

Jess was beautiful when she came in. She had a sky pink coffin with white heart with her name in pink on each end. A beautiful spray of pink flowers covered the whole coffin. My emotion bubbled over as soon as I saw her, as did Hope. I don't think you can ever prepare yourself for that first glimpse of the coffin. Her Mum, and then her Dad, met my eye and took my hand as they passed and I was pleased to be able to give them a bit of support. The service was lovely. Jess came into her favourite song "Truly, Madly, Deeply' by Savage Garden. She chose everything herself and her hymns were "Make me a Channel of Your Peace" and "Be Thou My Vision"

This Poem "What Matters" was read

What will matter is not what you bought, but what you built; not what you got, but what you gave.
What will matter is not your success, but your significance.
What will matter is not what you learned, but what you taught.
What will matter is every act of integrity, compassion, courage or sacrifice that enriched, empowered or encouraged others to emulate your example.

What will matter is not your competence, but your character.
What will matter is not how many people you knew, but how many will feel a lasting loss when you're gone.
What will matter is not your memories, but the memories that live in those who loved you.
What will matter is how long you will be remembered, by whom and for what.

What will matter is not your memories, but the memories that live in those that loved you.

It's not a matter of circumstance, but of choice

In the face of adversity you chose to live a life that matters

And Jess really did didn't she!

Jess left to "Time to Say Goodbye" sung by Katherine Jenkins. I'll never hear that song in the same way and seeing it on You Tube now brings back those tears that still come too easily. Gosh, Jess would be telling us all off for the number of tears that have been shed for her and the words that have been written about her over the last few weeks.

It was a hard funeral for everyone and watching Jess set off in her carriage on her final journey to the cemetery was heart breaking. The journey also led to a few of those moments that Jess would have chuckled at. We had no idea where the cemetery was and 'Sean' Oli's TomTom was not too helpful either. Luckily we caught up with the cortege and enjoyed watching the plumes jiggle about ahead of us, knowing we were with Jess on that last trip. A journey where she was surrounded, not by machines and tubes as she had be the last time I saw her arrive somewhere, at Kings Hospital just before Christmas, but by beautiful pink flowers. It was so sad yet beautiful and free. The horses turned into the cemetery road, straight through red lights which made us all giggle, especially as the huge, long line of cars behind it followed and did the same. I'm sure Jess would have approved with us finding some funny moments, even if the humour was a little black. It all added to our memories of the day. We really felt her giggling at us when all of us who'd worn high heels and funky shoes in her honour (as she had a thing for shoes) had them sink into the wet grass at the cemetery and covered in mud. Oli, Kati and Hope had awesome shoes on which got really mucky and were not best comfy either. In fact, Hope donated hers to me as soon as she took them off to reveal the blisters.

I warned Hope that the burial was the hardest but she found it OK. In fact, she said she felt very peaceful watching Jess be put to rest. She's such an amazing girl that Hope and I was so proud of her. I found it hard, not least finally having the opportunity to give Jackie, Jess's Mum a big hug. She held me so tightly and told me not to cry because Jess was strong. I'm sorry for crying again now Jess, you were so strong and we are trying to be but we loved and miss you so much. I told Jackie to keep in touch and she said she has to because she needs me now. She needs me to help her do some things for Jess. I promised Jess in my toast the day she died that I will do anything for her, even now, so feel less helpless knowing there are still things I can do to help her to do the work she began before she was taken so young.

Oli, Kati, Hope and I went 'secret roading' after the burial. This is where Oli and Kati explore unknown roads in search of places of interest, in this case a pub for one final toast to Jess. We found a quirky little place with some interesting regulars, so more opportunities for some amusement. Hope had her first shandy in a pub, she more than deserved it.

The journey home saw day turn into evening and we were a lot quieter. No doubt, reliving our memories and all feeling pretty tired. In fact, I was absolutely drained for the evening. More drained than I can remember feeling in a long time. It's been a long month. It started with so much hope for Jess and then went so wrong. Work has been busy with the media interest and, as I have blogged before, I found it very hard dealing with media in such tragic circumstances about someone I had become close to, but I did it and I know Jess would have been proud in that. Paul and his parents were with Wills and I wasn't really feeling very sociable so had a bath and then, later, Hope and I relaxed with a take away (Ellie had tea already but shared some). For a rare evening, I did nothing. I didn't even switch on the computer. I just watched mindless TV, dosed a bit and then chatted on the phone with someone who cheered me up no end.

Last night was restless. At the start of the year I wrote this entry as I was working out where this year would take me. The next entry was about Jess and we've had the snow disruption and, for me, a pretty nasty cold that gave me a muggy and useless head for a while. January 2010 has been an interesting month. There's been a lot of change, good and bad. I'm now sitting here going back to where I was before it all went so strange and thinking about where 2010 will take me, especially in terms of my work and where I'm going with it. I know I've taken on a bit too much and some projects have developed well, others not really getting off the ground. It's time to prioritise and, in some cases, take some tough decisions. My priorities I think have to be the organ donation awareness work and writing. In my writing, I need to diversify more. I have my novel well on the go and some interesting things to write about transplants but also need to get away from all of that sometimes. I'm really enjoying the work I'm doing about the Haiti Hospital Appeal.. that will be the subject of a whole blog entry of it's own over the next few days.

For now, it's time to snap out of the sorrow and move on. Jess has inspired us and we'll have that inside us, with memories of her, forever but we owe it to her and others whose passing came too early to live our own lives to the full. I found this song earlier on today. A good one for taking me from a tricky January into what, I hope, will be a happy and settled February. It's time to say goodbye to Jess, goodbye to January 2010 and goodbye to all that should be left behind to make space and energy to embrace all that the rest of the year has in store.

Jess, Haiti and God

2010-01-17T10:56:00.005Z

I'm still struggling to put my feelings about Jess into words so bear with me.

Right now, I should be at Church. Hope and Ellie are there but I am feeling a bit lousy with a cold and Wills is coming down with the same. That's the reason we're home but I would have struggled there today anyway. We've been through lots with Wills and I've never once questioned my faith as a Christian or really been angry with God for putting us through it. I trusted him that he was in control. On Tuesday night, I, like many others who knew and loved Jess, was in a total pickle! I spent a lot of time chatting on MSN to others and really felt unable to sleep. At about 3, I realised that I had to get up and do William's medicines in 3 and half hours and had to calm down and sleep soI did 'as Grandma would have' and poured a cup of tea and a tot of brandy left over from the Christmas cooking. While I was in the kitchen, my upset turned to anger and I found myself shouting "It's not fair!" a couple of times (which Hope heard and through was part of a dream). Part of this was venting but I was also shouting that to God.

It's not fair that Jess did so much to fight for people on transplant lists. It's not fair that she loved life and was so determined to hang on to it that she defied the odds and lived on the lung capacity of a coke can for the last 2 years of her 4 and half year wait for transplant. It's not fair that she waited that long. It's not fair that she got her gift right at the least minute and began recovering well only to have it snatched away again. None of this is fair and I am pretty angry with God about it. It makes no sense at all. I'm not having faith crisis, my faith is too strong for that but, it it wasn't for our colds, I would have felt a bit like "I'm none too happy with you right now God and today I'm not quite ready to come and visit you. Let's try again next week!"

Jess cared so much about other people, in fact a text that got in tears during the SaveJess twittering, was one that simply said "Thank you so much, if it's too late for me at least you're saving others." Jess was never that comfortable with the attention all being on her, she didn't see herself as important enough. She liked being the face of a campaign that would help others but didn't want it to be just about her. She would have been very moved and humbled by the impact her passing is having on us all but there would have come a point very quickly on when she would have wanted us to keep her in our thoughts but channel our energies into helping others.

I had some great meetings at the end of last week about how I can do more to help those waiting for organ transplants and will blog about those soon but, on Friday, something else came up where I can used my skills, some of which were gained in the Save Jess campaign.

A good friend of mine did a trek last year for the Haiti Hospital This is a Christian organisation who run a hospital in Haiti to help women and children. Even before the earthquake, 75% of Haiti women give birth at home alone. I in 5 of their children died before the age of 5. I met the trustees at a sponsored run organised to raise money for the trek. I was there photographing the event but we spoke about writing some features about their work and getting them some media coverage. I didn't hear anything else until Friday when a trustee called me to ask if I could write about their work following the quake. They are still standing in the North of the country but are expecting refugees this week, many of whom will beed medical help, many of whom will be pregnant women and children. They also plan to send some extra teams out to the worst affected areas of the country. This morning, I got a call asking me to come to an emergency trustee meeting this afternoon to discuss the plans further, how they manage the media response to the crisis and how I can help with with this and write some features for them.

I imagined what Jess would have said - something along the lines of 'pull yourself together girl, you can make a real difference here, just as you are with the organ donation awareness work, stop thinking about me so much and get on with it!' I have a lot of work to do with Live Life then Give Life this week which is fantastic and I have time also to do some work with Haiti Hospital, but not if I keep brooding about things I can't change. They'll be some tearful moments this week I'm sure. Jess's funeral is not until the following week so it will be a while before we feel the closure to move on with her memory. Life goes on though and one thing Jess taught us all is to make the most of every opportunity and every minute. This won't be the last you hear of Jess here but I am doing that now.

And as for God and church this morning, well, had I gone, by the time I'd picked up a message about the meeting this afternoon it would have been a lot more difficult to arrange to be there. So, God, maybe there is some sense in all this somewhere and you are in control and have a plan for me. Right now, I still think life is very unfair and I am cross with you. I'm still listening to you though, communication hasn't broken down.

To Jess!

2010-01-15T11:36:00.007Z

Jess - how I will remember her

I made a New Year's resolution to keep this blog updated at least every few days. So far, I have failed. The truth is, I may be a writer, but this week I've been finding it hard to find the words.

On 28th December, just 3 weeks ago, I wrote this

Jess's call really was magic, something I was beginning to think wouldn't happen. The magic continued and each day bought news of a slow and steady recovery. I was beginning to look forward to the day she'd be well enough for visitors so I could give her and her Mum a huge hug. I was beginning to look forward to watching her mature into the amazing woman I knew she'd be. Jess took those wonderful breaths with her new lungs and she and her family will have been making plans for a wonderful future. Then, on Tuesday night, all this was snatched away from them. Jess had waited so long her body just couldn't cope. It's just so unfair and I' struggling to come to terms with it. To get the call, to receive the gift, to take those breaths and have it all taken away again. I'm devastated and can't begin to imagine how her family are feeling right now.

All I do know is that I, and those others involved in Save Jess and live life then give life did all we could, we really did. I've been going over it and over it and we did. I will continue to do all I can. I'm redoubling my efforts, trippling them!

Wednesday was one of the most horrific days of my life. We embraced media with savejess and save jess-tival. We made it high impact so, naturally, the media wanted to share how this story ended. I can't begin to explain how horrible it is to confirm over and over again that your friend has died when you're only trying to come to terms with something that happened the day before. I had prepared myself for it. I even told someone earlier the same day that I had steeled myself and was ready, could cope. How wrong I was. I don't think anything could have prepared me for that day in all honesty. It was a very long day and I'm still pretty exhausted. I'm just glad that, by doing that, I was able to spare her family having to face such calls. I must say, the media were fantastic, sympathetic and understanding. Most had been following her story and she had touched their lives too. Here are some of the tributes they paid her:

Stuart Linnell on BBC Northampton (33 mins in)

BBC Kent

KMFM

Sky News

and here, Jess tells her own story:

Jess touched so many lives. I had to email, call and text all sorts of people from the media and celebrity world on Tuesday. I even had a conversation with Sarah Brown, who was wonderful and so supportive. In fact Sarah, it you're reading, you were so calming and made me feel so much better.

I'm honoured to be able to call her my friend. Just before Christmas, her Mum told me she saw my family and I as her family. I see Jess and hers in the same way. This is agonising but I will keep her memory and her legacy alive and keep on working and fighting for a day when people don't wait too long for transplants.

Now my tears are back and I'm in Starbucks and don't want to look a numpty so I'm leaving this entry with the toast I made to Jess when we all raised a glass on Wednesday:

To Jess! To your fight, your spirit, your smile, your love for life, your tenacity, your passion and to everything you should have been with them in the future you never had. I promise I will fight to make that future possible for all those waiting for transplant you cared so much about. God bless you. Fly High beautiful angel. Heaven is a better place for you being there and earth is sadder x x x

2009 becomes 2010

2010-01-01T01:01:00.004Z

It's 1.ooam on January 1st. Mum and Dad have gone to bed. I have a left over glass of bubbly, a few nuts, some chocs and rubbish on the TV and am full of hope for a wonderful 2010. I'm really enjoying the feeling, one of those moments to hold onto. This is the first time in 4 years that I can really see a new year in and wonder what excitement and opportunities it will hold for the children and I, rather than just wonder if Wills will make it though the year, how much time we'll be away from the girls in hospital, how many days we'll be home together.. Of course, there will likely be some health scares for Wills this year but, overall, things are good. This time last year, we were still in Birmingham recovering from his transplant and it was the end of February before we were home. The year before, Wills was really ill in Chelsea and Westminster and, again, we weren't home until February (and then home very little throughout the whole of 2008). A lot of people are reflecting back on the whole decade today but, for me, the years before Wills is like another lifetime. I have memories, good and bad. There are things to look back on and learn from but I am such a different person now. It's not until you see first hand how fragile life can suddenly become that you really learn to appreciate what you have and make the best of it. While 2009 has been a journey for Wills back to health, or I should say really to a health that he had never had before, for me it's been a journey to work out what I will do with the rest of mine. With 3 years out of life looking after William in hospital, I have had to rebuild everything; my career, social life, even family life and it's still very much work in progress.

At the end of 2009, I have three amazing children who I am so proud of and who have a lot going for them in 2010. I have fantastic friends, many of them people I have met and come to love since William's transplants, some old friends who have been with me through the thick of it all and some old friends I had lost contact with and am getting to know again. I am looking forward to having more time for my family friends in 2010.

Career wise, 2009 has been an exciting journey of discovery. I have always wanted to write and my ambitions there are being realised. I've had several features published in magazines and am about to send my first novel to a scout to have a look at and, hopefully, work towards finding a publisher. A big surprise to me in 2009 was photography and how that took off. The Gifts of Life exhibition may have postponed for 2010 but the images are there and many have been used in local and national papers. The other huge development career wise has been the PR and media work, with Live Life The Give Life, promoting organ donation. This is all something that just developed and snow balled. Save Jess grew from just a few tweets and resulted in loads of celebrity support, over 5 million people reached through twitter, loads of media coverage, a text to Natalie Imbruglia that resulted in her, Ed Byrne, The Yeah You's and Glen Wool playing a gig to help us raise awareness and, ultimately, an invitation from Sarah Brown to the Downing Tweet Christmas Party. This time last year, I would never have dreamt any of that would happen.

One of the best things about the PR work is getting to hear all the inspirational stories people share with me. People waiting for transplants, people who have new lives because of their gifts and people that were brave enough to say yes when their loved ones were put in the position to become organ donors. It's all incredibly humbling. I am so passionate about these stories and get such a buzz when an editor wants to run them because I know how much that means to those whose stories they are. Several people have told me how this work keeps them going while waiting and gives them hope to cling to. This means the world to me. To be able to really make a difference to other people's lives like that is a real privilege. A report has just come out to show that organ donor awareness campaigns are leading to sharp increases in people signing the organ donor register and that the percentage of people on the register has risen from 27% to 28%. That's great but it's a baby step. There is still so much more to so.

So, what are my goals for 2010? Above all else, I want to to be there for my family and friends. There is still a lot of lost time to make up.

Other than that, well there is a lot to build on from the things I've achieved in 2009. It has been a bit of a whirlwind and, with a Christmas and New Year media campaign, there hasn't been space to reflect back on it all yet. Save Jess will continue and will be used to highlight other stories of people waiting for a transplant who are desperate and running out of time. Save Jess-tival was organised in 2 weeks!! If that can be achieved in 2 weeks, I am wondering what can be achieved in a year and have my thinking cap on...I am now working with Live Life Then Give life on specific projects, which is fantastic, and I will explain more about that later in the month. I'm meeting the transplant tsar, Chris Rudge, in a couple of weeks to discuss the work I've been doing and some of his plans. I'm sure that will result in more ideas for things I can do to help see the day when the 96% of the population who support organ donation are on the register and no-one has to die waiting because a suitable donor can't be found. I've seen that happen to too many people now, and most of them children. Children's organ donation is something I particularly want to discuss with Chris. Campaigns at the moment are all about signing the register for yourself and it's a very different thing to think about what you would do if your child were to die suddenly. I as told that only 25 children donate organs a year and that William had only 4 chances a year to get his transplant, and would be in competition for those chances with anyone else with the same match. Thankfully, he did get his chance but others I know were not so lucky.

Outside the campaigning, I want to build on the writing by doing more features, getting a publisher for the novel and getting more established as a novelist and feature writer. Holly and I are about to start a new project, documenting the year in the life of the Shooting Star Children's Hospice in Hampton. This will involve photography and writing and I'm really looking forward to getting started next week. I'll blog more about that in the coming days.

All in all, 2010 promises to be an amazing year. I'll carry on discovering more about my new skills and experiences and how they can be put to good use. At the moment, I'm freelancing on things which is great as it gives plenty of opportunities to do lots of things and I can work around William's health and hospital appointments etc. I hope I'll keep getting enough work to pay the mortgage and bills and feed, clothe and entertain the children. Maybe 2010 will bring me a big break, who know. What I do know is that William's donor not only saved his life but has given me a whole new one that I'm only just beginning to explore.

Christmas Magic

2009-12-28T21:27:00.005Z

Jess and Natalie Imbruglia at Save Jess-tival

Jess's Magical Grotto

On Boxing Day, I blogged how I amazing our first healthy Christmas has been and how I hoped those friends I have who are waiting for their transplants can experience the same next year. My Christmas wish was for them to get their call, not least Jess, the inspiration behind the savejess campaign. I saw Jess on Monday when myself and some of her other friends went into her room at Kings Hospital, London ahead of her on an emergency transfer to transform the room we all feared she would spend her last Christmas into a magical grotto. I have never seen anyone fight for their life so hard. Both Emily (the friend I was with) and I went away feeling we had seen her for the last time. We all hoped a little of the magic would be real enough for her to get the only Christmas present she wanted this year, a pair of new lungs and a chance to see in the New Year.

Jess is an incredible fighter and, over Christmas, although on a non-invasive ventilator 24 hours and day and very unwell, she seemed to be regaining a little strength. Therefore, I was surprised and upset when Emily called me yesterday to tell me Jess had taken a big turn for the worse and that we needed to prepare ourselves for the very strong possibility she wasn't going to make it through the night. At around midnight this morning, I received a text from Jess's Mum and hardly dared to open it. It said one sentence "Jess is having her transplant NOW". I had to read it several times. Right at the very 11th hour, someone somewhere had said thought about someone else at a time of immense tragedy and said yes to donating their loved one's organs. Although she was very ill and very close to death, Jess's team allowed her to travel to the hospital where the transplant would take place, knowing that there was absolutely nothing to lose. Jess has had 9 false alarms and, should this prove to be another one, the stress of the journey could have been too much for her but there was the chance this was the real thing. And it was! Once the news went out that Jess really was now so very very ill, we had all been praying really hard and sending positive vibes that Jess's call would come. She had fought so hard for so long, it couldn't just end this way. It really wasn't fair. Those prayers and vibes were being sent out all over the country and my facebook homepage had nothing else one it.

Prayers are answered, wishes can come true, miracles can happen, maybe there really was some magic in that room because, just hours after it looked like it was too late for Jess, the call came. The nature of Jess's call reminded me very much of William's call, that also came when he was experiencing a medical drama with his own damaged bowel (you can read about that in my blog entries from November 20th 2008). Readers who have followed our story will know that we had a real bumpy ride of a recovery with Wills after his transplant. I called it a game of snakes and ladders and I know Jess and her family are just on their first square. But like I said for us, they are on the board at last and the final square is there waiting for them. My thoughts and prayers are with them all, as well as with the wonderful donor family who made it possible for them to rejoin the game of life. My thoughts are also with those who are still waiting for their chance to play.

Please, if you are not already, do think about joining the organ donor register. Organ donation saves lives. Please call 0300 123 23 23 now or visit www.uktransplant.org.uk.

The Christmas That's Been 5 Years Coming

2009-12-26T15:30:00.002Z

One happy, healthy little boy

Relieved big sis

Playing with the new toys - Planet Protectors

Waking up together to see what Santa's bought - for the first time in 5 years

For the first time in 5 years, we've spent Christmas at home together with the family. No hospitals, no painful treatments, no drips, no anguish that this could be the last Christmas fro William. It has been wonderful. William was as excited as any 5 year old and had the energy to be able to feel and express it. We spent Christmas in Stoke-on-Trent with Mum and Dad, the first time ever they've been able to see William over Christmas. I could say more, but the pictures say it all.

Of course, my thoughts and prayers have been with our donor family, with those I know who died waiting for their gift of life this year, for friends we have lost over the last 5 years and for those who, like us in previous years, spent yesterday trying their best to enjoy the day, knowing that this could be the last their loved ones will see if their gift of life doesn't come soon. My Christmas wish is that those I know who are waiting for their transplants get that call very soon so that they can spend a Christmas full of happiness and peace next year like we have this year.

It has, once again been a while since my last blog and blogging much more regularly is on my list of New Year's resolutions I promise. I will blog over the coming days about what has been going on to distract me but, for now, I want to hold the memories of a truly special day and I hope you have memories of the same.

I can't believe I was there! Downing Tweet Christmas Party Pt 2

2009-12-06T20:39:00.006Z

I've said numerous times in this blog that it wasn't just William who got a new life when he had his transplant. It has been an incredible year for him. It has been an incredible year for Hope and Ellie who have been able to settle back at school with their friends and live the kind of life a 10 and 13 year old should live without waking up every morning the fear that their brother may die today. My own journey this year has been somewhat challenging and, at times, surreal. Like most Mums of a sick child. William and his care has dominated my life. I had to give up my work and completely fell off the social radar. There was no getting life back to normal for me after William's transplant because the life I lived before he got so sick had gone for good - my career, my partner (although he is still a good friend) and some of my other friends too. There was no picking up where I left off - I needed to start again and it isn't easy. I think this year for me can be summed up well in the chorus of Duran Duran's classic "Ordinary World" Even such a fantastic change as a life saving transplant can leave you searching where you go next. Life is certainly unrecognisable from that it was before William was born or to what it was when I lived in hospital with him month after month. I am still trying to find my way back into the 'Ordinary World' but I don't think I'm doing too badly. I look back on this year and see a near finished novel, several magazine features published, The 'Gifts of Life' images - the exhibition is postponed but the project has already had a huge impact, The 'Save Jess Campaign and Save Jess-tival and all the organ donor awareness that came out of that. I am now running the Christmas media campaign for Live Life Then Give Life with great success so far. It has been an exciting year, a whirlwind. I recently updated my website so please do have a look to see what I have been up to and what I will be getting up to in the future. It tells a very different story to that it would have done a year ago.

I am a single Mum and so can't always get out and about easily. A lot of this has been possible through social networking on Facebook and Twitter and, through those, I have made some connections with some amazing and inspiring people. Twitter, in particular, is fantastic in enabling you to connect with people who share your interests and passions. It also breaks down barriers and I have had many a conversation on Twitter with people I could never dream of connecting directly with in any other way. The Save Jess campaign utilised this by asking celebrity tweeters to forward messages about organ donation to their thousands, sometimes millions, of followers. One of the people it has been amazing to connect with on Twitter is Sarah Brown. Through Twitter, she has given us valuable support and personal encouragement towards our organ donation awareness campaigning and I have learned about many, many other campaigns and charities, including the Million Mums campaign I blogged about yesterday. If you didn't read yesterday's blog then please do now before reading onto. The message is important.

Sarah Brown has sent me messages of support and encouragement in the past but a week or two ago, I got a message from her asking for my postal address. A few days later, I received an invitation to the 'Downing Tweet Christmas Party' I had no idea what to expect. It is a very long time since I received an invitation to any party, let alone one from the Prime Minister's Wife to a party at Downing Street. Thankfully, I managed to arrange for Paul's Mum and Dad to look after William and the girls so, off I went to Downing Street. Emily Thackray and Holly Shaw were also invited and Emily and I exchanged several excited and nervous phone calls on the way. We were both grateful that we had arranged to meet and go in together and felt more confident feeling our way and networking as a pair.

That famous door, together with the Christmas tree and special road sign for the occasion.

I met some amazing people and so enjoyed hearing about them and their own passions and interests. With some of them, I shared a particular connection and hope that we will get to know each other better through twitter, following blogs and meeting up again. I'm not going to mention all those inspirational twitterers I met because I'm sure I would miss someone out and feel terrible about it but they were; people who have a disabled child or who lost a child and now run charities to support other families; people who have rebuilt their lives after a difficult break up and now help others to do the same; people who support and help Mums and families through the daily stresses and beyond; people who work in PR and have a particular interest in social networking; some young labour party supporters and political bloggers (a future PM?); writers; broadcasters; choreographers...and, of course Sarah Brown and Gordon.

I can't believe I chatted about William to the PM and his wife

Emily and I had a chat with Sarah about organ donation, cystic fibrosis and parenting a child with a medical condition. She was so down to earth it was incredible. I wasn't at all nervous, it felt just like chatting to another Mum about our children. Later, we went along to introduce Holly and found Gordon Brown there as well. Sarah introduced us to him and I had a chat with him about William and organ donation. He told me about a friend of his who had a heart transplant many years ago and assured me he "is doing everything he can" Like Sarah, he was very down to earth, easy to talk to and very genuine in his interest about William and organ donation.

Beverley Knight performing absolutely unplugged - no mic

One of the biggest supporters during the Save Jess Twitter campaign, and who often 're-tweeted' our messages, was Beverley Knight. She is a very warm and open blogger and someone who you really feel you get to know a little through her tweets. We were really happy to hear Sarah announce she was here and would be performing a couple of songs. Emily and I took the opportunity to thank her for all her support. She greeted us like friends and chatted for ages. You often think that the more famous tweeters won't remember your tweets in the way you remember theirs to you but she certainly remembered some of the exchanges I'd had with her.

She was also down to earth and absolutely lovely. She sang 'Shoulda Woulda Coulda" and "Gold", which she dedicated to all of us there. Both songs are great affirmational songs and have been made really special to me for being played by someone who has been so integral to the twittering that bought me to such an occasion on such an amazing night.

"Tweetipies" - mini mince pies with Twitter birds on them

Other celebrity twitters I chatted with included Brian Friedman from X-Factor who was very friendly and open. I told him how much William loved John and Edward and how gutted he was when they went out. I had a bit of exclusive news about them and when they may make an appearance again and was told he would see what he could do to arrange a hello for Wills, especially because we are supported by CHASE Hospice Care for Children, whom Simon Cowell is associated with. I'm not expecting anything to come out of that but we'll see. It would be an amazing and much deserved special treat for Wills, Hope and Ellie if anything does happen.

We felt quite bad because we would start chatting to people who were feeling upbeat and in a light hearted mood and would then move them with our stories about organ donation and the happy and tragic endings we have seen. The '3 people die every day' line was never far from my lips. Kirsy Allsop, from 'Location Location Location' was wonderful and moved enough to take an organ donor leaflet and form from me. We spoke at length to Margaret Vaughn, wife of Alistair Darling, who had popped next door from No. 11. She also has a dear friend who was one of the first to receive a lung transplant and is very supportive of organ donation. I did get a strong feeling how committed our Government are to improving the outcome for those waiting on transplant lists and I so hope they win the next election to continue the good work (for that, among many other reasons). The comedian, Peter Serafinowicz was also very moved. Sorry we bought the tone down right at the end of your evening Peter! To everyone I met and chatted with, every single one of you was inspiring in a different way and I am so glad to have met you. Please do stay in touch on twitter and, who knows, out paths may cross again in the real world again.

I'm sure there is more I want to say about the night. It was amazing and showed me how far I have come this year. From living a life pretty much entirely in isolation rooms in hospital and, if I am open and honest, pretty low in self confidence - to this, not just standing in No 10 with all these amazing people but everything that has happened on the way to that. It is, as I said earlier, surreal but incredible and something that I just hope I can build on now.

I'll just leave you with a link to the equivalent Friday a year ago so you can see what I mean.

Photo credits: All official No 10 Downing Street, Courtesy of @ SarahBrown (through Twitter)

Million Mums - Downing Tweet Christmas Party pt 1

2009-12-05T17:27:00.004Z

I am having a wonderful, although very emotional time at the moment. It has been many years since I have felt so Christmassy. This year, I am able to relax and enjoy advent and the Christmas preparations, the Christmas concerts and sitting round the table with glitter and glue because, for the for the first time in 5 years, William, Hope, Ellie and I are home together and, barring any sudden emergencies, we will be for the foreseeable future.

William had his annual review in Birmingham last week and the transplant team are really happy with him. It is becoming clear that he has "High Functioning Asperger's Syndrome". Most children with complex 'syndromes' involving numerous health and physical aspects seem to have some characteristics that place them on the autistic spectrum. This is something I will come back to in a day or two as it is interesting and deserves a blog of it's own. A quick update was needed but today's blog is really all about one very exciting thing.

I have said on a few blogs that I am a big twitter fan (where I am @Sarah_E_Milne). So much has happened for me and for the work I do to promote organ donation because of twitter. The Save Jess campaign was born out of twitter and I have met some amazing people by exchanging 'tweets'. One of those people is Sarah Brown, who tweets under the name of @SarahBrown10. I have been privileged enough to receive tweets and messages of support from her on twitter. Last week, I got a message from her asking for my address. A couple of days later I received an invitation to the 'Downing Tweet Christmas Party', a reception in support of the Million Mums Campaign. Before I go on to tell you about what an awesome time I had and all the amazing people I met, I want to take you right back to the very beginning of William's story, in fact Hope and Ellie's story too, the very beginning of my journey into Motherhood.

I have severe asthma. On the whole, this is just a pain. It makes me cough and wheeze when I walk around and can stop me doing some of the things I want to do, some days more than others. When I am pregnant, it becomes much more of an issue and actually made me critically ill and needing intensive care. I was in hospital from 26 weeks with Hope, desperately trying to get her to 32 weeks gestation when it was felt her delivery would be safe for her. I made it to 30 and for 3 days, she and I were in intensive care, our lives in the balance and my poor family not knowing which end of the hospital to be in. Thankfully, we both did amazingly well. This could have been a one off so I ventured into a second pregnancy. With Ellie, I was in hospital a bit earlier and spent time in intensive care before her birth as well as after it. She was smaller and sicker than her sister and had a few more 'premmie issues' to get through. We even had one of those horrible moments, and one I will never forget, when a doctor calls you into a counselling room and utters those sickening words "We are doing everything we can but...." Thankfully, they did everything they could and, by the end of one of the most terrifying days of my life, there was no but. William's conception was not planned but he was very much wanted from the minute I knew he was there. With Wills, I was in hospital from 24 weeks and in and out of intensive care for several long weeks. There was talk of putting me to sleep and ventilating me until he reached a viable age. There were suggestions that I should terminate - suggestions I couldn't hear of. In the end, I used a non-invasive ventilator (NIV) that delivered a full breath as I breathed in and helped me get enough oxygen to support him. On better days I managed with high flow oxygen. Again, he and I were in intensive care for several days after the birth. William needed a lot more support than his sisters as he had 'Chronic Lung Disease of Prematurity' and was on oxygen 24 hours a day for the first 15 months of his life. He has continued to need a huge amount of medical, educational and physical support since his birth. Some of these problems are likely to be because of my state in pregnancy and his premature birth, others could have happened anyway.

I, and my three children, are incredibly lucky. We had modern medicine and intensive care units with skilled staff. Without them, I wouldn't be blogging now and there would be no Hope, Ellie or William. Yesterday, I had a long chat with Jo Cox, the Director of the Maternal Mortality Campaign. She told me that 50% of the world's Mums have given birth on the floor, alone. Half of all Mums. That is an incredible statistic. Every minute of every day, a woman is dying in childbirth. 99% of these deaths happen in developing countries and almost all could have been prevented, often by an easy and inexpensive intervention. The Million Mums Campaign is working on changing this. Please visit the site and register your support. If you can, give them just a little money too. If you can afford it, give them more. I work hard to promote organ donation because, without our wonderful donor, William would not be here but, without the care I had and the children had in pregnancy and birth, our story would not have begun at all and that is why I want to do all I can to help the Million Mum's Campaign.

I was going to move on to all the exciting things that happened yesterday but, you know what. I think I'll leave you with these thoughts and come back tomorrow with the story of the reception itself. Before I tell my next story, please go here that site and help women in developing countries to have a story of Motherhood to tell.

Reflection and Celebration

2009-11-21T00:18:00.004Z

Remember this?

November 20th 2008

Someone told me a couple of weeks ago that we would get our call for William's transplant when we least expected it. Well, yesterday was quite a day!!! I will post properly later with the whole story but for now, the big news is that William is in theatre having his new tummy. He went in at 7am this morning and we are expecting an update at about 12.00pm when they will be half way through the op. I am excited, happy, relieved, worried...and very sad and thankful to the donor family. My thoughts are with them.

Can you believe that was a year ago?? It has been an incredible year. I am feeling very reflective and, I'm sure, will be blogging more about our transplant story over the coming days. It is surprising how much you just deal with on auto pilot at the time you are going through it and it comes back raw some time later. It's a good thing I think. Some things can't be comprehended fully when you're experiencing as thinking about it all too much. You just go on autopilot and get on with the practicalities of the situation. If you have been following this blog, you will remember that we had our ups and downs during William's transplant recovery. I called it a rollercoaster - and it was for 3 months. William was well enough to come home at the end of February and the journey to that day contained a good few times when things were very worrying. Things just took their time with Wills though and since then he has never looked back - 9 months of excellent health, something we could never have dreamed for before his transplant. Here's to many more! We have our donor and her wonderful family to thank for that and we do that very day.

Today, we remembered them by lighting a candle while we shared our thoughts and said a prayer. We were hoping to let of a chinese lantern but it is a tad too wet and windy so we'll do that over Christmas instead. Reflection was an important part of today but so was celebration. Celebration of William's gift and celebration of how far he has come this year. He is now off tube feed in the day and drinking strawberry milkshake instead, supplemented with a tube feed overnight. Today, we celebrated strawberry style with strawberries and strawberry fluff for breakfast and a strawberry birthday cake at home and at school. I gave the children a new breakfast set each so they all have a lovely Cath Kitson cup, bowl, plate and egg cup to commemorate this special milestone. Wills chose a birthday tea at MacDonalds - a happy meal to play with (not quite eating that yet). It has been an amazing day, an emotional day, weird at times but amazing.

Dropping back home out of the whirlwind

2009-10-28T20:39:00.003Z

Hello...is anyone there? I wouldn't be surprised if not. I am so sorry it has been such a while since I last blogged. I have been incredibly busy and working flat out until the wee small hours every night then crashing. I have been meaning to blog but haven't been able to squeeze it out of myself. Well, today, I have come here before getting stuck into the evening's work.

So, what have I been up to? Before I explain, let's just revisit my first blog of November 2008.

MONDAY, NOVEMBER 03, 2008

Bugs, bugs and more bugs!

We are not home! William got more bugs in his line so we are here for a while longer. His blood tests are not too stable and he is needing more potassium and is back on TPN for 22 hours a day. We need things to be a bit more stable before we can think of home. The main thing the doctor had to say was that we need his transplant and we need it ASAP!

Things were so unstable for William this time last year. Every day, all I could do was pray that his transplant call would come and, if it didn't, that he would still be there in the morning for me to pray the same again.

We were so, so lucky and William's call came when he was at his very sickest. It really came at the 11th hour. In three weeks, we will be celebrating the huge milestone of reaching a year after transplant. We were told the first 2 years after a small bowel transplant are the most critical and we are almost half-way there. Of course, we will be remembering our wonderful donor and her family who made this possible for us as we give thanks for the William we have today with all his energy and love of life.

We were the lucky ones. Others are not so lucky. If you have been following the gifts of life project, you may remember Oliver. Have a look here if you can't remember. Isn't he the cheekiest chappy? Very sadly, Oliver died 3 weeks ago. His little body just couldn't wait any longer for his new kidney. I got to know Oli and his Mum, Lucy, very well since meeting them in April and often popped into see them when I was near the Evelina Hospital where they had been staying since Oli fell ill the afternoon after the photo shoot. I feel so sad whenever I pass now, knowing Oli isn't there anymore.

You may also remember Jess. Jess is still waiting for her double lung transplant and has been critically ill several times since I last blogged and this is why I haven't blogged. Myself, and many of Jess's friends started posting about Jess on twitter and I had the idea of turning it into a media campaign. I sent an email suggesting this as an idea on Sunday morning, a week after my last blog post here. I had no idea where that mail would lead. If I explained all here you would still be reading at Christmas so, suffice to say, I have been on an incredibly steep learning curve, managing a campaign savejess, doing lots of PR and media work and persuading the likes of Natalie Imbruglia, Ed Byrne and the Yeah You's to play a gig for Jess and to raise awareness of organ donation, oh, and organising said gig in 2 weeks! It has been a whirlwind and I am only just winding down and getting back to normal. It has been exhausting but Jess doesn't have time to wait. Oli was struggling so much and I thought he would just keep on having close shaves but coming out the other side. I just hope Jess gets her call (the right one, she has had 9 calls that didn't result in a transplant, either because the donor lungs were too damaged or because Jess was not well enough.

There is a lot to tell about all this and it has had a huge impact on me and what I am doing now. I am aware I have missed a huge chunk out of the blog. I am now going back over the last few weeks and collating it all so I may well throw in a couple of catch up blogs. I will certainly be blogging about where this all takes me next. At the moment, your guess is as good as mine. For starters, I suggest you get hold of a copy of The Sun tomorrow as they should (and I say should as you never know in media) be running an exciting story about what happened at the 'Save Jess-tival' gig (another reason why I haven't blogged in the last 2 weeks as I had to stop myself blowing the exclusivity).

Meanwhile, the novel is coming along very nicely and I hope to try and get a publisher early in the new year. My other writing is also going well and I have a feature in 'Yours' magazine out next week. Writing is developing faster than photography at the moment. It is nice to have the two things because sometimes the door opens for one and others for the other. I also really enjoyed the PR side of Save Jess-tival and managed to get some great media coverage. This is something else I would like to do more of. As ever, I have lots of ideas and wish there were more hours in the day and days in the week. Some of my ideas are big but, after what has been achieved over the last month, I will no longer think that an idea is too big for me. If you have the passion and the belief that you can do it, you can do it!

I know I keep saying this but I really do promise to blog regularly again now so do get back to the habit of dropping by... I WILL see you soon...

Back to School

2009-09-13T12:15:00.000+01:00

Gosh, it has been a long time since I last blogged. So much has happened since that it would be a very long blog indeed if I listed it all and I'm sure I would loose you long before I finished. I am on Facebook (Sarah Milne) and on Twitter as Sarah__Milne (the line is a double underscore) and do 'tweet' several times a day so, if you want to see what is keeping me away from this blog, you can follow me here . Now all three children are back at school, I hope to have time to keep this blog updated more regularly.I have been crazily busy over the last few weeks, perhaps it wasn't my most sensible plan to decide to go self employed and launch a new career in the Summer Holidays, with the children home. I'm not known to be the most sensible about these things though. Getting things started and entertaining William all day was a challenge, but one I think I rose to.

Over the Summer, I have submitted articles to magazines, provided photographs for several charities, a number of events, four local newspapers, national newspapers and magazines. I have also started portrait photo shoots. I will sit down this week and list everything in order to update my CV. It is a good start and I am very happy with how things are going. I have now done enough writing and photography to see where my strenths lie and where I should specialise. After some analysis, thought and some suggestions from those close to me and some of those I have worked with, I will be specialising my feature writing on child health and illness, transplants and organ donation and and family issues around chronically ill and special needs children, although I will write more widely as well. As a photogapher, I will specialise on documentary and public relations, PR, work (which I will approach as a documentary project of a day or event). Work is developing nicely but I do need to work out a marketing strategy to sustain it. I hope to finish a draft of my novel by the end of the year and, of course, have the hospice artist in residence project to plan. There is something else that I will soon be able to tell you about as well :).

There is a lot going on but it does now hinge together.Most of my work is still at home but I am beginning to get out more to meetings and photo shoots. It is lovely to work with people and not have to worry that a meeting will almost certainly have to be cancelled or moved because of a crisis for William. For the last year, I have lived pretty much in jeans and converse boots. This was perfect for hospital and is great for sitting at my desk at home and for informal shoots. Apart from the odd thing I bought for a specific occasion, this is pretty much my wardrobe. Having sorted the children with new uniform for school over the last couple of weeks, Hope and I went into town today to buy a few bits for my new term. I needed some things that can be worn for meetings and more formal photo shoots. While we were out we talked about how things have changed for us as well as William since the transplant. Both of us are feeling more free and self-confident and enjoying being able to make plans. Even short-term plans were impossible to make before William's transplant. We are all enjoying the stability and the security that is enabling us to develop our own lives. William's transplant bought new life for the whole family and we are all making the best of it. September has always been a time of year that energises me. I love the 'back to term' feeling, the new start, clean sheets of paper and new pens. This September is bringing about the biggest and best fresh start of them all

The power of art..

2009-08-22T22:58:00.007+01:00

Some samples of my photography. You'll see why they are here as you read on..

I must apologise for the long period of time between this and my last post but you will see why as you read on. I am always pretty busy but have been uber so over the last couple of weeks and it has all been pretty big, life changing stuff.

The title of this blog is 'My Journey with William' yet, regular readers will notice that the 'My' is often somewhat neglected as 'William' takes over my life. He has done. He has dominated it and I don't blame him or the situation nor do I think I could have done anything different over the last few years when he and I spent 80% of our time living in hospital. However, thanks to our wonderful donor and her family. He is home, well and, although he still needs a lot of care, it is care that others can learn to do. So, I have been thinking about my future and how I can use what we have all been through to shape it and how I can use the lessons we have learned the hard way, often too late, to help others cope with similar situations. I have been thinking hard, and praying too, to work out what I can do and, last week, my thoughts and plans came together.

During the months leading up to William's transplant, while we were facing losing him, there were times when life was unbearable. I was trapped in out 'Chelsea Pad' with a poorly and fractious child, often in isolation in a world that I found myself being rapidly absorbed into while losing contact with life outside. The girls were away with Mum and Dad in Stoke-on-Trent. I knew my relationship with Paul was crumbing and all I could find the energy to do was to look after William. I didn't really know what I was thinking and feeling and certainly had no strength to deal with it. Afterall, what did I matter. I just willed myself to get up in the morning and hold the thinning strings that kept our family and our lives together. I have always been a writer and was working on projects in hospital. But then, I discovered photography and, with it, my creativity was re-awakened. Suddenly, I had a means to explore and express the way I felt. I photographed everything, I journalled avidly, I scribbled, I collected pictures from magazines that expressed how life felt and how I wanted it to be. That became my lifeline. I turned our experiences into art and it saved my sanity. Suddenly, within my confines, I had a reason, other than looking after my Son, to get up in the morning. Something that was just for me and I had a means to understand myself.

This continued throughout William's transplant journey and I now have boxes of material from which I am writing stories, poetry and a novel and creating photo books and a small art 'installation'. From that the Gifts of Life project was born. I will be forever committed to using the talents I have been developing in promoting organ donation. I will be continuing with Gifts of Life next year and will be doing other projects to raise organ donation awareness too.

There is something else I want to do. I want others to be able to unlock their own creativity to help them cope with their journeys, particularly other mums of sick and life limited children. So, another very exciting project has now been born. Throughout 2010 I wil be working as an artist in residence at a children's hospice, which I will name when the families have been told in their newsletter in the coming weeks. I will be photographing a year in the life of the hospice and a year in the lives of some of the families during their every day activities. Through this, I will document the challenges these families face; the poverty, the relationship strains, the impact on siblings, the anguish of knowing you will bury your child. I will also document the joys that such a child brings, those special moments when you get a smile or a chuckle from a child who generally has very little obvious interaction with the world. I will write articles, poems and books and, as in Gifts of Life, raise awareness but I will also be doing something to help more directly. My artisit in residence programme will include workshops to help others use art and creativity in their own lives. I am really looking forward to what they come up with. I am so excited about this.

My next job is to find funding for this, although I will do it regardless but it would be nice to do it comfortably. I am hoping to get it from Arts Council funding but am also thinking more creatively too. Any ideas, please do let me know.

In addition, I need to find a way to fund my own family. So, here is where you find out the relevance of the pictures at the top of this entry. This week, I also launched my own potrait photography business. I have a passion for taking images of people and, while I have a drive to document and raise awareness through the medium of photography, I love just capturing people. So, I am hoping I can make a sucess of a business as well to earn the income that is very hard to earn through documentary work.

It is a big leap and a big risk but all of this feels right. It is certainly a new road on my journey and this time it is mine. I had such a good feeling yesterday as I sat back and thought of all I had created and that is what I have done too. No-one handed me these projects, no-one wrote me a job description on how to be an artist in residence and come up with the business. It is all created from scratch by me and I am really proud of it.

The British Transplant Games

2009-08-10T17:51:00.002+01:00

We have been very busy since my last post. We had a few more wet but lovely days at Mum and Dad's AKA Grandma and Grandad's and then we were off the the British Translant Games. The games opened on William's 5th birthday, a birthday I am pretty certain we may not have seen were it not for his transplant coming when it did. The games were amazing, emotional, inspiring... I will blog properly about them but it has all be crazy busy since. I took photos and have been writing, hoping to get an article out about the wonderful children in the Birmingham Children's Hospital team who have now won the children's trophy at the games for 14 years in a row! You can see my pictures here I hope they show something about what a fantastic weekend the games are and how much everyone takes from them.

William certainly took a lot from the games, especially seeing other children who have had transplants like him. He loves Aaron and calls him his 'transplant brother'. We are going to participate in the UK Transplant Sports activities as much as possible as we all had a really great time. William enjoyed meeting people but was somewhat reluctant when it came to running. Quickly realising that his physical limitations were going to mean he came last by a long way, he decided to come last in style and go as slowly as he could, much to the amusement of the crowd who had been urged by the announcer to support the youngest competitors. William enjoyed the ball throw more and did very well to come 4th, nearly getting the bronze medal. He did get participators medals in the sportshall for the obstacle course and in the tug of war. He was featured in our local paper, where they made a bit more about the medals that his did get than I just did. You can read the article here accompanied by one of my photos. A few from the games have made it into print which is really exciting. I learned a huge amount form the seasoned pros who were there covering the event and aim to build on this straight away...watch this space.

I am hugely proud of William and of the whole Birmingham team and the fantastic staff that give up their own time to manage them right from the application process through the games themselves. If the games ever come near you, do go along and see it for yourself. It is easy to forget that all those 2000+ adults and children taking part are only alive because of the kindness of their donor families. When you do remember for a second, it is impossible to stop the tears from coming.

William's 'Favourite Day Ever'!!

2009-07-27T22:06:00.005+01:00

Well, it had to be something to do with Thomas...

When Wills was in Birmingham, recovering from transplant, he saw Thomas Land at Drayton Manor being advertised on TV. He asked over and over if he could go there when he was better and 'could mix again'. Today was the day. Grandma, William, Ellie and I went off to Thomas Land, leaving Hope and home with Grandad. In fact, Hope had an ideal teenage day - in PJs all day long and the day shared between the TV and Computer!! We had loads of fun in Thomas Land and Wills was a real daredevil - going on all the rides he was able to go on. I was a bit less care free as, due to his cerebral palsy, he has limited core strength and is a bit wobbly at the pelvis. While he was screaming with delight, I, or Mum, were holding him tightly to stop him falling. We had to draw the line at 'Trevor's driving school' as they were bumber cars in the shape of the tractor with no belt or way of holding him in and he would have to sit on his own. Cranky was also out as he would have to sit on his own and be dropped up and down at a great height! He went on everything else though. Maybe there is no fear left for fairground rides when you have been so poorly, had such huge operations, including a transplant and had so much to go through in recovery. I was almost relieved when he showed a little fear on the 'troublesome trucks rollercoaster'.

William declared the day his 'favourite day ever' and he was still singing Thomas songs in bed and studying his map of Thomas land at 10pm this evening! This was another day where I constantly felt so lucky we still have William and so thankful to his donor family.

School Holidays Day 2

2009-07-21T21:50:00.002+01:00

I am not going to blog like this every day of the school holidays - I promise you!

But, today was also rather eventful:

For the first time in months, William's blood tests are a bit out, particularly his blood counts. He is fine in himself though so I am hoping it is an inaccuracy. Still, until they have been repeated and we know we have a little hint at something to be concerned about. We have had a good run with not a single worry so it is overdue really. Hopefully, it is all something and nothing. I am waiting to hear back from Birmingham.

I got my first proper professional photography booking :) The first of many I hope.

I was live on Radio 4 -You and Yours you can listen here I am on in the first 10 minutes, second caller. I started listening but had to switch off a few seconds after hearing myself but others say it came across well.

Ellie and I stumbled into what looked like a huge police arrest in The Whitgift Centre only to discover it was filming for The Bill, complete with all the big stars (most of whom we recognised from Eastenders rather than The Bill)

I got my long awaited for Canon 5D camera - afterall, if I am a pro, I had better have pro kit. Have played with it already and you can see the difference even when just playing. I had been saving up and then, when I was ready to jump, no-one had any and I promised myself the next one I saw would be mine. I went into Jessops today for a memory card and there it was...

I wrote an article highlighting the number of people who die waiting for transplants to send out to all those publications currently obsessed with mortality statistics.

Hope did not dye her hair as I am photographing the children as part of a magazine educational shoot with a pro tomorrow. However, she did buy it ready to do the next day.

All in all, a very productive day with lots more little signs that things are coming together and plans I am making are beginning to come into fruition. I need a master plan to tie them all together though. That is my next job.

School Holidays Day 1

2009-07-20T20:18:00.004+01:00

William, who has been out of nappies for three months now (a pleasant surprise to us all as we didn't know if he had control or not) had so many 'accidents' I actually lost count.

Hope and Ellie went into town on their own to watch Harry Potter - and managed to loose each other on the way home.

Ellie and William chanted incessantly that they wanted their birthday presents today.

Getting up an hour later resulted in the feeling I was playing 'catch up' all day - so alarm set for 6.30 tomorrow.

Hope has now gone to the aid of a best friend who tried to dye her hair 'chocolate' and it is now 'ginger'. Hope plans to dye her own hair tomorrow!!

Please all you pandemic planners, do not keep the schools closed in September. Swine flu has got to be better than insanity!!

BUT

This is the first school holiday that we have been together for in three years!! Ellie and William will have their birthdays together next week. William has been in hospital for all but one if his so far. I am enjoying collapsing on the sofa with the remnants of the chaos all around me and reaching for a very full glass of red wine. This is the stress that every other Mum experiences and is much better than the stress I was under this time last year when we were in hospital awaiting transfer to Birmingham for an urgent transplant assessment.

Increasing Efforts

2009-07-18T21:26:00.002+01:00

There is a lot I want to blog about right now. There were three subjects fighting in my mind to be the subject of today's entry but, then, something happened that blew them all to the back of the queue to be blogged about later in the week.

The children and I spent today at the seaside today with a fantastic lady and her beautiful daughter, incorporating a Gifts of Life photo shoot. I checked in on Facebook and my emails while I was downloading the photos and there was some absolutely awesome news waiting for me to hear. Gabrysia is out of intensive care and recovering well from her heart transplant last week. There was an email from someone who has become a great friend and who I am really fond of with some really amazing personal news - you know who you are and YAY :) :)!!!! But the very best thing of all was that, there right on the top of my Facebook home page, was an update from the very special Jess saying that she had arrived at Harefield Hospital having been called for the double lung transplant she so desperately, desperately needs. I could not have been more pleased, excited and nervous that this was going to be THE call for Jess. This is a girl who knows the routine very well. She has been waiting for her transplant for four years now and has had seven false alarms. When I met Jess, three months ago, she had just had her last falsea alarm. She has been very unwell several times since then and has been very close to dying more than once. Jess has a lung capacity so low that the best breath out she can muster has less than the power of the fizz when you open a coke can! So, this HAD to be the call for Jess. Inbetween getting William ready for bed and sorted out, I kept checking Facebook for the latest news. I was totally gutted when, there it was, this was Jess's eighth false alarm!! The donor had deteriorated too fast so, despite being already brain dead and on the life support, no organs could be saved before the heart stopped beating. My thoughts and prayers are with this family tonight who did make that choice to save lives in their moment of tragedy and then lost even that chance to hold onto something positive in their day. My thoughts and prayers are with Jess and her family too. Jess will be the first to admit that her time is running out. She is 20 years old and it is unlikely that she could wait a further three months for another transplant call. Please join me in either praying or sending some very positive thoughts that she doesn't have to wait that long.

I made a promise to Jess today that I will work harder than ever before to make sure I do all I can to raise awareness and get her those new lungs. I know there are many others doing the same. So, I am now thinking of more ways 'Gifts of Life' more effective than ever and other things I can do to help people like Jess. I have to think quickly though, Jess doesn't have much time.

Swine Flu

2009-07-15T23:36:00.001+01:00

One of the most fantastic things that has happened since William's transplant is that we don't have to worry constantly about the sudden life threatening episodes that were happening so frequently, and almost continually this time last year. We now have swine flu and most parents are concerned about the their children contracting the disease. Thankfully, for most children, swine flu results in 3 or 4 days, a week at most, being unwell before making a complete recovery. I am concerned for Hope and Ellie but really just that they will be feeling yukky for a while and it will be unpleasant for them. I don't have any concerns at all that anything more than that will happen if or when they get it. William is, of course, different in that he is a transplant recipient and is kept alive by a balance of drugs to supress his immune system to stop him rejecting his new bowel but not too much so as he is overcome by infection that his body has no ability to fight. This is explained to parents at great length at the time of transplant assessment and we are fully aware of the life long implications when we consent to the operation. This is why transplants are only offered when there is no alternative and the child will not survive much longer without one. William is amazingly healthy these days. I have had several colds lasting days, even weeks and he has had a sniffle of sore throat for less than a day, if anything at all. So, I hope that he will be able to overcome swine flu if her were to get it. Afterall, he has overcome a very severe pneumonia not long after his transplant when he was on a lot more immunosupression and was still very weak, nothing like his is now. Then, he was really ill and nearly in intensive care but bounced back in days, amazing the doctors. I am sure he will bounce back from swine flu too but you just never know do you. He is immunosupressed and, if he were very unwell, the level of his medications could be reduced to allow him to fight an infection, but then he may reject his bowel.

I was terrified about swine flu initially. I stocked up on face masks and tins of food and was ready to seal the children off from the world until it was over. Then, I chilled a bit and was not worried at all, until today. It seems William could well have been very closely exposed to it over the last few days and, once again, I feel a bit like we are haivng to keep a close watch and hope and pray he doesn't suddenly get sick and end up in hospital again. On the other hand, I could well have had swine flu myself last week and he is fine. At the very least, I had a really rotten cold and he didn't catch that so he is obviously pretty strong.

I'm not sure where I am going with this entry really. It is late night musing and venting to a large degree but I guess the main thing is we all want to be able to predict who will get swine flu, who will get very sick and who will die. The media is going crazy trying to predict these things and, in doing so, terrifying us poor parents, especially us who have more vulnerable children. It isn't helpful. I saw a poor official being grilled on BBC Breakfast this morning and he was doing his very best but he just doesn't know.

I am not going to closet William away. Life is for living and we don't know what is around the corner. We just have to make the best of the present moment. I was talking to someone today about a prayer my Grandma told me to adopt when I was a teenager. It is the serenity prayer:

'God grant me the serenity to accept the things I cannot change; courage to change the things I can and wisdom to know the difference...'

There is nothing I can do to take away the threat of swine flu so there is absolutely nothing to be gained from worrying about it and, as my Grandma would have said again 'dwelling on it'. So, instead of going to bed playing out all the possible scenarios I am going to go to bed with a good book and forget about it.

Having worked all that out for myself, I could delete this post but maybe I will leave it just in case it helps anyone else to try and stop worrying about it too.

National Transplant Week

2009-07-09T09:38:00.004+01:00

It is National Transplant Week this week - a week where people are urged to think about organ donation. I could blog on for ages about this but there is one main message really. Today, I woke up, cuddled, got ready and sent three very happy and healthy children to school. If it were not for William's wonderful donor and her family, one of those children would be missing from our lives.

The more I meet donor families and also meet people who lost a loved one but didn't donate organs and wish they did, the more it becomes clear that talking about organ donation is as important, if not more so than signing the register. Your loved ones need to know your feelings about it so that your wishes can be known if they have to make such a decision.

This week, think about it, talk about it and sign up here

Thank-you

A Lovely But Emotional Weekend

2009-07-06T23:39:00.004+01:00

William's new special friend

And another special friend

The lovely Holly, making butterflies with Hope and William

And Ellie hard at work with hers

Planting the Memory Rose

Hope, Ellie, William and I travelled back up to Birmingham over the weekend to go to the Donor Family Network gathering and Thanksgiving Service. We had a wonderful and emotional weekend.

We stayed with a lovely family and made some great new friends. We felt so relaxed with them and had lots of laughs and fun. The children were all up playing and watching DVDs until midnight on Friday, with William asleep on the sofa between them. The adults were sipping wine and chatting and the rest of our time with them followed on in the same way. It was hard to believe we had only just met. William was particularly taken with the family dog. He was somewhat worried at first and declared that he wanted to go home as soon but would not leave her by the end of breakfast time the next morning. The children haven't yet stopped talking about their new friends, the fun we had with them and their hope that it won't be the last time they see them.

The Donor Family Network meet was an emotional day. I felt very privledged to be there with all these wonderful people who have donated organs. I spent a lot of the morning with the children, settling them into their craft workshops but did find time to catch up with the lovely Holly and Oli. I also managed to catch part of a workshop led by recipient donor co-ordinators which I found really interesting. It was a fascinating, emotional, of course, insight into what happens on the other side of the gift on transplant day. We had a very nice lunch, during which we were asked by 'Aunty P' to speak about our experiences as transplant recipients as part of the next session, which was in the main hall and involved everyone. This was the first time I have spoken about William's transplant journey. I followed Holly reading a very beautiful poem and Oli speaking with great confidence about his own transplant. I was very nervous and emotional and nearly got overcome a couple of times. I didn't have anything prepared and was conscious not to say the same things as I was planning to in the address that I had prepared for the service the next day. I think I managed to get our story across in a sensitive way. It is especially hard to talk to donor families as you feel conscious that your story is happy where their's ended in tragedy. It was clear that these families really wanted to hear our storied though and drew strength and encouragement from them. This is the way of the transplant community. We are one big family that are always there for each other. We are so lucky to have each other. My transplant family grew a whole lot bigger over the weekend with new friends that we are looking foreward to meeting again at the transplant games in July. Some of the donor families will be there, cheering on the participants and awarding medals.

After the recipient talks, the really moving part of the day came with families being awarded certificates and angels to commemorate their loved ones. This was done against a back drop of a slide show of photos and accompanied by music. I doubt a single adult in the room had dry eyes. After the ceremony we planted a rose. The families wrote tributes to be planted in with compost with the rose. I wrote a short and simple thank-you to our donor. William was presented with his own angel to remember his donor by. It is now hanging over a frame of photos depicting his transplant journey.

In the evening, I had the opportunity to go out for a meal with Aunty P, Holly and the Donor Family Netork Trustees but opted to stay 'home' with the children and our host family. We had another lovely evening. The children played hide and seek and bounced on the trampoline and the adults chatted some more. We had an earlier night though as adults and children alike were tired after Friday.

On Sunday, we went to church with Aunty P and then met with Holly who treated us all to a greasy cafe brunch sandwich. Thanks Holly, my shout next time! It was then time for the 'Giving for Living' Thanksgiving Service. I was giving the address so pretty nervous. The service began with welcomes and then the wife of a donor lit the Paschal (Easter) candle. Holly, Holly's parents, Hope, Ellie, William and I lit seven candles from it to represent the seven main organs given for transplant (including the small bowel) and the main candle was extinguished to represent that the donor's life is over once the organs are given. It was very moving. The lady who lit the candle gave a really interesting and moving reflection on her experiences. She described being asked about organ donation as a glimmer of hope and light on the day she lost her husband. Nothing could be done for him but this was something positive that could come out of their tragedy. I gave my address and got through it OK after a small wobble at the start, where I thought I may have got overcome, but managed to hold on and recover. William's transplant consultant was there for the service which was lovely and meant a lot to me when I was giving my talk. He said afterwards that he likes to get to it to give thanks for those children he is able to save through transplant. The service was led by the chaplain who has a special responsibility for the liver until where William had his transplant so it really was lovely to be able to share this act of thanksgiving and remembrance with these two members of our transplant team. I won't describe my address on here but I will send a copy to anyone who would like to read it. Holly followed me with a very brave and moving account of her transplant story.

After a buffet and some long goodbyes to some very special people whom we had got to go over the weekend, we were on our way home. We will certainly get to that special service as often as we can do. It is an honour to be able join with donor families in the act of thanksgiving for their loved ones.

Closing doors and looking for open windows

2009-06-29T14:36:00.004+01:00

Wow, I hadn't realised how long it has been since I last blogged here. Is anyone still there? I really am going to get back to blogging here more regularly.

We have gone through a strange stage in our adaptation to life after William's transplant recently. For the last few weeks, we have been approaching something that resembles a 'normal family' routine. William is back at school and, at the moment at least, is really very, very well. At the beginning of June, we went to Birmingham for his scopes and biopsies due at 6 months post transplant. All seems to be going well. His stoma is a bit of a mess as it is prolapsed and coverd in sores where it takes a bashing as he runs around enjoying his new found energy. It does need to be 're-fashioned' but it is not urgent and Wills was in such a state over his 'special sleep' for the scopes that the team want him to work with a psychologist to get a bit of control over his phobia before hand. This will be a fairly major op and will necessitate a few weeks in hospital and some more painful and unpleasant experiences for him. There is also no guarentee it won't prolapse again. As William's colon was removed at transplant, his stoma is for life so this is just something we will have to learn to live with if that is the case.

The girls, William and I are really enjoying getting out and about and enjoying the summer. This is the first time we have been home for any decent time in the summer and so we have never seen Croydon in the hot sun or had the chance to enjoy trips to London and further afield. We are certainly making up for lost time. We also have plans for a trip to Mum and Dad's - the first time William has been able to stay there so that will be really special, the British Transplant Games and some 'mini breaks' to combine Gifts of Life photo shoots and seeing a bit more of the country.

Most of all this adapting to life free from the constant threat of a lengthy time living in hospital is very exciting. There are some aspects that have been hard though. The children and I have spent so long out of our social circles that, in some cases, it sometimes feels very difficult to see where we fit back in. William and I returned to our church for the first time in nearly a year yesterday and everything has moved on so far without us, and so much has happened to us and within me that I hardly felt like anyone really knew me anymore. It will take time to see where the 'new me' that has been changed so much through this journey can slot back in. On the flip side, I have so many wonderful new friends who I have met along the way who are just terrific and I love them very much. There is the journey itself too. Now we are eight months after transplant, I am now able to look back on it all and using it as inspiration for new projects. So, there are some great things and some more tricky things that we are dealing with at this phase in the journey. I guess we have reached that stage of reflection where we are processing it all and how it has changed us, mostly for the better and I certainly have that feeling that I have so much to share and to give to others as a result that it is a real need to find how I can go about doing so. A transplant in the family is a real life changing event but it isn't just the transplant itself, it is the three years previously where we spent 80% of the time in hospital. This has had a huge impact and I can't just go back to where I was before, in some cases it is impossible to, even where I would want to.

Very sadly, the main casualty of the life we have led over the last few years is my relationship with Paul. I am not going to blog about the details but for a variety of reasons, Paul has found it very difficult to fit into the family. There are, of course, other things that have happened to our relationship during these last very stressful years. This kind of journey either makes you or breaks you and, unfortunately, it broke us. It is sad as we did have something really special once upon a time in a world before our vocabulary was dominated by medical terminology and the expressions we shared became limited to anguish and stress. This next chapter of my journey with Willam, Hope and Ellie really started a long time ago . It does, inevitably, bring about some tough times but I know I can turn to friends and my wonderful parents for support. I have three wonderful children and we have lots of fun things planned for the summer. On the whole, life is very good.

Long overdue catchup!!

2009-06-09T20:44:00.002+01:00

Sorry it has been such a long time with no catch up on here! If you have been following my Gifts of Life blog here you will know that I have been very busy with that. With catching up at work now things are more stable at home, the Gifts of Life project, getting going with my writing and making plans for the future...I have been very busy in the evening when the children have gone to bed. No excuse not to keep things updated here though and I will try harder.

William went into Birmingham Children's Hospital last week for his 6 month review endoscopes and biopsies. I was relieved to be going in as we had been having some strange, sudden high stoma gushes after feeds and we were worried he may have some problems or a bit of rejection. He was fine in himself though so we were all a bit confused. Everything looks good inside, we are still waiting for his biopsy results. His prolapsed stoma does need re-doing and it will be another fairly major operation. William was very, very traumatised by the 'special sleep' needed for his scopes so we are not rushing into this surgery. There is no need as it is all working fine. It just can't stay that way for life and he does have some nasty sores on it from where it receives trauma as he plays. We have been asked to arrange some psychological and play specialist help for William to over come his terror of surgeons and anaesthetics first. The good news for him is that, because of the trauma that everyone witnessed and because things are looking so good, we are missing the scopes and biopsies that he should have in three months time and going straight to his annual review ones in November. Hopefully, he will stay well with no major complications over the next 6 months and we will stay home. We have been home now for over 3 months - a huge record in recent years!! He really is doing better than we could have dreamed. This is one of the main reasons why I am so committed to the Gifts of Life project and raising the awareness or organ donation. I want to see more outcomes like ours.

The girls are loving the stability of us all being at home together, although they are away on holiday in Wales at the moment. William's hospital admission clashed with Mum and Dad's holiday and, with no other childcare options for the girls, they just had to go along - I'm sure you can imagine how gutted they were...not!! William should be re-starting school next week and so the children will be enjoying the end of term and we are all looking forward to an action packed summer holiday to make up for lost time.

An incredible 6 months!!

2009-05-21T11:52:00.002+01:00

Yesterday was 6 months since William's transplant!! What an incredible 6 months it has been and what a huge difference it has made to his life and to all of us.

I have blogged on the 'Gifts of Life' blog here a lot of what I would say here, and there are some pictures too, so please do hop over and have a read.

Just to add here, thanks so much to Jessica for 'Emily' the wonderful balloon William received through Postpals yesterday, on his half transplant birthday. Perfect timing. He absolutely adores 'her' and plays with 'her' nonstop. He always loves balloons but is having even more fun with it being a little person, whom he has named Emily.

Two Huge Thank-Yous

2009-05-18T18:25:00.004+01:00

I have lots, as ever, to tell you all but today's blog is all about thank-yous. I have two massive thank-yous. William received a special parcel today, a wonderful quilt of Thomas and his friends, characters and the ones in the real world today from Love Quilts. It is a fantastic quilt, made of cross stitched panels from all over England and from Northern Ireland, Majorca and the USA. Thank-you Katherine, Karen, Stephanie, Sandy, Jan, Jan, Gilly, Victoria, Sue, Debi and Patricia. William is a very happy little boy and I know he will love it and treasure it always. It will be a family heirloom and will be used as it is meant to be but equally well looked after and cared for.

I have another huge thank-you which I have been waiting for a good time to make. Well, we are on the subject of thanks and these thank-yous are linked too. A huge, huge thank-you to David and Jacqui. David and Jacqui are cousins of Paul and Paul once sung at David's wedding, a good few years before I met him. We received a very amusing letter about this and David wanting to return the favour but not really being a singer himself. David decided to return the favour by training for and running the Edinburgh Half Marathon on 5th April which he completed in an impressive 2 hours and 4 minutes. In doing this, he raised some money for us to help William and the family. This was a total surprise to us and we were amazed by the generosity of David's sponsors, especially the Staff at Support Services and The University of Edinburgh. Thank-you so, so much.

We have been thinking hard about how to spend the money. Now, here is where this is linked to the quilt. William's bedroom resembles a hospital room. He has a hospital cot that was to enable us to access his line easily when he was on TPN. He has no bedroom furniture but has a drip stand and a trolley to prepare intravenous medicines and his TPN and, in place of toy shelves, he has a set of drawers full of medical bits and pieces. Some of this he still needs as he has his feeds and his stoma bags and things we need to change them. Sometime over the next year, William will be having a brand new bedroom. We are having a downstairs extension as his physical limitations mean he can't go upstairs without a lot of help. Our house is due to be adapted for his needs. We still don't know if he will eventually need to use a wheelchair in the house as a lot depends on how he copes with his body as it grows. With this in mind, we are having major work to widen and move doors and open up extra ones, as well as a downstairs bedroom and wet room for William. We will have a huge job to re-floor and decorate the whole of downstairs after this (so be ready for a painting party anyone who lives near enough). We wanted to be able to make his room extra special as he has never had a little boys bedroom with medical care taking it over. With so much to do to the house, this would have been limited but we are going to spend most of the money on a really great room for Wills where his medical equipment can be hidden away and it will be a bedroom he can enjoy and play in and retreat from his sisters in. This will be something he will really enjoy as he grows up. The girls had to go into a room together when William came along and are going to have a room each again when he moves downstairs. The time I spent on all William's care meant that I have neglected their room and it has run down a fair bit (the whole house has really). So, they will each have some of the money to spend on personalising their rooms. They are really excited about it.

This will all be a fair way down the line as we are waiting for the work to be done and don't know when it will be. So, in the meantime, a little of the money will be spent on a few days by the sea - the first sea-side holiday we have had since William was born. We can only manage a few days away this year as William's care needs are still high and, as I don't drive and Paul is at Glyndebourne every single day of the summer, there is only so much feed and medicine I can carry. We will make it really special with the extra funds we can put into it and the children are really looking forward to it.

To help with this holiday and to make the best of our new lives having loads of great days out, I wanted a fold up special needs buggy for William as his electric chair and big frame buggy, although best for him for school and local trips, are very limiting on a day out. Last week, I bought one of these buggys from e-bay to put a little of the money to immediate use and we put it to the test on a day out on Saturday (blog on that to follow as this is long enough already!).

There is one last thing we will do with it (we are really making it work so I hope you will all be pleased and David will think those miles worthwhile!). While William was isolated in his cubicle for three months after transplant, the very best £20 we spent was on a cheap and cheerful freeview digibox to supplement the TV in the room and enable Wills to watch round-the-clock CBEEBIES, which was his lifeline really. We want to purchase a similarly cheap and cheerful box for the five cubicles to enable other children to be able to enjoy the same after their transplants. I will be sorting this out when William is in for his 6 month post transplant tests in a couple of weeks. It isn't a huge amount of the money but will bring a lot of joy and comfort to the children, and to the parents who sleep in there with them. Cheap boxes work well and are not too expensive to replace if they get stolen so, within reason, we will try and make sure there are always boxes in the rooms.

I really hope you are happy with our choices and will post photos when the bedrooms are done. We were totally amazed by this so thank-you so much again.

Oh, and David and Jacqui, you did include an invite to come and see you. I hope you meant that because we hope to combine a Gifts of Life photoshoot near Glasgow with taking you up on it sometime. We are really looking forward to meeting you

Hold the Front Blog Page!!!

2009-05-10T13:39:00.003+01:00

It has been another amazing week and there is a lot to tell you about. This was going to be another newsy, catch up blog but something so exciting has just happened that all that can wait for the next few days. Such a major milestone deserves it's own 'front page!!' William has eaten a whole fromage frais this morning!! It is the first time he has done anything more than lick something. He decided he was going to do this yesterday to earn the engine Paul has waiting for him for when he eats a whole pot of fromage frais.He has known about this for ages and held the 'one day' view but, all of a sudden, he decided for himself it was time. I fed him to make it easier and he enjoyed the first half pot. It became a bit of an ordeal after that but we made it eventually.

This is great news as it has broken William's aversion to put anything into his mouth and swallow it. So, now it is a case of weaning. William needs to learn all the skills he should have learned in his late babyhood. I have told him that I will be feeding him various soft foods and purees every day from now on and will be a little forceful if necessary to get him to the stage of eating enough in the day to be able to stop his daytime gastrostomy feeds. If he eats a little something every day this week he gets a present on Friday. The next challenge will be to eat a little something at every meal time, and then he will get another pressie. After that, he will be expected to eat because he wants to and because he needs to. He just needs a little push to get started.

There is lots more news but it can all wait for a couple of days. The only other thing that I will tell you for now is that Wills is also out of nappies. He has been a total superstar over the last couple of weeks and we are so proud of him.

Bye bye nappies

2009-05-02T22:32:00.004+01:00

It has been a lovely day today. Most of the day has been busy sorting out deliveries of feed and their giving sets and containers etc. I never have the space for it all when we are fully stocked so it is always a challenge. I still get a kick of seeing all those bottles of feed arrive and looking at them knowing they will be tolerated and absorbed. It is soooo much nicer than a delivery of TPN! Today was even more chaotic than usual as we had our delivery of 2 months supply of nappies yesterday. I have 18 packets of nappies in a big pile in the conservatory and they may be there for quite a while as....drum roll.... William was in pants and dry all day today!! What a star! I decided to have a go at potty training on Wednesday and he used it straight away so I put him straight into the Thomas pants I bought as an incentive reward. He had a few accidents on Thursday and Friday and today was the first dry day. He is still in nappies when we are out and about and at night but I think it will be night time only within a few weeks, although I may invest in a travel potty as he does tend to go little and often. He thinks it is all very funny at the moment and is drinking as much as he can to 'make more wee'.

Potty training is one of those things thay got put on the shelf while we dealt with the more life threatening things. This will not be too difficult to catch up with but there are other things that need addressing now we are coming up to 6 months post transplant and William's health has stabilised (for the time being, I always say this because you can never be complacent after a transplant). One of these things is his cerebral palsy and maximising his mobility. We have never really done a huge amount of physio with him as it was not the priority. Now Wills is so well, we are able to see what of his physical limitations were due to him being unwell and what needs attention. He has a foot deformity and some tightness in his legs. His foot deformity would normally have been addressed when he as a baby but it was not in his best interests to do it all then and was out of the question once he was waiting for a transplant. I had a long chat with his physio about it this week and the time has now come for action to be taken. We are waiting to see his orthapeadic consultant but it is likely that William will have something called the 'ponseti method' carried out on his feet. This entails around 6 weeks with his legs in plaster up to the knee. Each week, the angle of the plaster is varied slightly to correct the deformity and bring his feet to 90 degrees. After that, he will probably need to wear boot joined with a bar for a proportion of the day. He is going to hate it and it seems a bit cruel when he is enjoying running around without his TPN. However, he has a great chance now to be healthy for, I hope, a good few years, maybe more. So, it is also cruel not to correct the deformity as that would mean he would almost certainly loose the ability to walk in time. He will probably still tire easily and use a combination of walking around the house and wheelchair for longer distances but that is still a lot better than being unable to walk at all. So, we will do this and we will keep him going through the process. I will ask that we wait until after the summer though. He deserves the summer on his feet, having fun first.

Despite being busy most of the day, I did steel some time sitting in the garden with a coffee and the paper. It is so lovely feeling the beginning of the summer and knowing that there is a very good chance we actually will spend it home together this year. Moments like that over the last few years have been spent in the knowledge that enjoying being at home and enjoying the garden would not last for long and we would soon be back in hospital.

Why things have been a bit quiet on here in the last week...

2009-04-26T20:55:00.004+01:00

Gosh, it has been a while since I last blogged. People used to call me in worry that Wills was unwell when my blog went quiet. Hopefully, most people will now guess that it is due to thing being particularly busy and, this time at least, they would be right. Long may that last! William remains unbelievably well and things have been hectically busy. William is a new child, he really is. He is very healthy and things are really settling down. We are enjoying the stability and enjoying hanging out and being a family together. It is fantastic having all my children together. It is an amazing feeling being outside in the garden, feeling the beginnings of summer and believing that we could actually get the opportunity to enjoy it together this year and get out and do things. In the last two years, those summer garden days were generally numbered only a few, a week perhaps at least, before they were snatched away and we were back in hospital and separated from the girls again for many long weeks. I am loving the fact I can make plans and write things in my diary, knowing that it is more likely they will happen that not. The girls are having a great time going out with their friends, having fun with Wills and I and, generally, having some stability to grow up in and start to spread their wings - which they are both doing.

Having a more predictable life is critical at the moment as I have lots going on. I am getting back up to speed with work and catching up time lost with so much disruption over the last few months and years. In my 'spare time' I am working away at the 'Gifts of Life' project. Things are moving very fast and, if you see another gap of more than a few days with nothing new on here, you may want to check the Gifts of Life blog to see what has been taking up my time and keeping me away from blogging here. I am really excited to have Holly on board now. Holly had a living donor kidney transplant last year and is using her photography to explore the relationship between transplant recipients and their donors. Her images will form part of the 'Gifts of Life' exhibition which...drum roll please...is opening in a fantastic gallery in London. The Menier Gallery on Southwark Street near London Bridge Station. The exhibition will run from 14th-19th December so do put it in your diary and come and see us if you can.

We have some really exciting plans but, as ever with this kind of project, we are looking for funds to make it all happen. Among our many fundraising plans, we are offering the chance to sponsor one of my images in the main exhibition. The cost of each image, incorportating absolutely everthing from travelling to the photo shoot, printing and mounting the image, its share in the cost of the gallery hire, publicity...absolutely everything is £250. We are inviting individuals, families, businesses or groups the chance to sponsor an image or images. In return, we will acknowledge them with the image in the exhibiton and in the photo book. We will also invite them to the private viewing on December 14th and present them with a complimentary copy of the accompanying photo book. If you, or anyone else you know could help with this then please do get in touch.

If that were not enough, I am getting well and truly back into writing. I am back at the City Lit adult education college for a couple of hours on Wednesdays for a writing workshop. It is fantastic to be back with people after so long in isolation with William. Not surprisingly, there is an awful lot of material that has to be attended to before my brain has the space to work on anything new so I am writing mainly about my experiences over the last few years. One project is to compile all my thoughts, photos, letters and some of the art work I did with William (and some of his photos too!) in a journal style autobiography. Thanks to Holly for that idea and giving me a purpose for the huge box of stuff I have accumulated. I am also using my experiences as the foundation for a heavily autobiographic, yet fictional novel. This is great to be writing as it give me the chance to really explore some of the situations I found myself and some of the issues I was faced with.

Wow, now you can see why I have been quiet on here for a week - I promise not to be so quiet for so long again.

Chocolate has never tasted so good!

2009-04-16T20:59:00.004+01:00

We had a lovely Easter. It has been so lovely being at home together with William happy and healthy. We have spent most of the time at home as we can't go out to the park in the rain and can't go there on a really sunny day in the school holidays as it is too busy. We have enjoyed playing in the garden together and getting out as and when we can but the best thing has been just hanging out together. This afternoon saw me getting some work done whilst watching the girls play on The Sims on the Wii and William busying himself with his engines. It has been nice just doing our own things but doing it relaxing together at home.

Oh, and the best thing of all has been to see William licking chocolate and sweets and even a twiglet. More tiny baby steps towards eventually eating and getting off his gastrostomy feeds. He likes the taste of chocolate and has now stopped washing away his little tastes immediately with water. The girls and I managed to give up chocolate for the whole of Lent too. Chocolate has never tasted better as it does in this house right now!

Easter Holidays in Isolation

2009-04-08T19:30:00.003+01:00

Wills TPN and line free, off to investigate some trees

First daisy chain of the year

Back to the daisy chain

Wills enjoying some rough and tumble play with Hope (until his bag leaked in spectacular fashion!)

Showing William the daisies

Ellie frantically picking daisies to finish her chain when William's bag dictated we made a hasty retreat home

Today should have seen us off to CHASE Hospice for our first holiday together in four years. Unfortunately, another child arrived with chickenpox which is a huge deal for Wills post transplant so we had to cancel. We are all very disappointed as we had lots planned and Wills has a lot more space to enjoy in his isolation. Still, we are determined to make the best of the holidays and decided to make the most of the sun this afternoon and head for the park. There were too many children in the playground which was nice in a way as we were forced to make our own games. We are heading off to another park a bit further away tomorrow as we plan to be more organised and go as soon as one feed is finished (and with extra stoma bags with us in case!). If the sun shines warm enough, we may even have a picnic - looking at Ellie in her sundress you would think it was already hot but the rest of us had a couple of layers on today!

It is a challenge keeping them all happy. Thanks so so much to Postpals and to the wonderful people who have sent the children Easter activities to do. We will be making the most of them over the next few days. At least this year we have plenty of time for making hot cross buns and easter cakes. It is a while since I have done that. Hot cross buns is planned for tomorrow. In many ways, it is nice to have to simplify life so much. I am looking forward to the end of the isolation period though. Just another 5 weeks to go.

Thanks to all you heroes

2009-04-08T09:43:00.001+01:00

Thank you so much to those of you who signed the organ register yesterday and who donated their Facebook status or proflie pic and sent emails etc... It was an amazing day and early reports suggest that Holly's campaign has les to a massive three fold increase in people signing the register. That is amazing. So amazing that look what happened at the end of the day here Holly has been invited to meet the man himself to talk about the campaign and how he can help.I spent yesterday eveing at a drinks reception with people who have had a or are waiting for one transplant, donated a kidney or are part of a famiy who made that brave and incredible decision to donate organs. There was an amazing bond between us all. So many people there would not be alive anymore without that gift. We heard all about Holly's success and vowed to keep on figting until people are not having to die waiting for organs. My 'Gifts of Life' project is part of this fight. There is a lot of exciting things going on at the moment and it is all so inspirational. Thank you, thank you, thank you for your help and support in it

Take 2 minutes to be a hero

2009-04-07T08:58:00.004+01:00

You can be a hero today and it will only take you 2 minutes!

We are looking forward to a happy family summer this year and this is possible because William got his gift of life in November last year. Countless families are still living in the agonising uncertainty that is life on the transplant waiting list. Of these people still waiting, 1000 will not be here to celebrate the 2010 New Year because their gift simply will not come in time to save them. If it were not for our wonderful donor family, that could have included us.

Today is world health day and the lovely Holly, herself a recepient of a kidney transplant last year, is heading a campaign to celebrate world health day by making it Donor Day - a day where people are encouraged to think about organ donation and sign the donor register. You may have seen Holly on GMTV this morning and, if you are in London, have a look at the front page of a Metro - they have changed their banner to advertise Donor Day.

Please, please join the GMTV and Metro team be a hero today by visiting http://www.thegiftoflife.org.uk/ to read all about Holly and her project and sign the organ donor register. It will only take you 2 minutes, as long as it takes to boil your kettle for a cup of tea so go on, put the kettle on and drink your tea knowing that you have just become a hero.

Still need convincing?

Then watch this

http://www.onetruemedia.com/shared?p=871891da46b1c656e8a5ed&skin_id=801&utm_source=otm&utm_medium=text_url

New blog and website

2009-04-05T11:56:00.002+01:00

I have another new blog. I have started one to record my journey through the 'Gifts of Life project. You can find this new blog here I promise I will keep them all updated regularly.

Gifts of Life also now has its own website here

For now though, my attention is turning to Spring cleaning my kitchen cupboards and the girl's bedroom. Those who know what that will entail will know that will take a big part of today (and will involve a good few strong words between the two sisters).

Wills is still well. As we were told to expect, it is taking a while for him to get shot of the cold but he is well in himself. Couldn't ask for more.

Be a Hero On 7th April - Put The Kettle On

2009-04-04T18:16:00.002+01:00

Calpol and Cuddles

2009-04-02T00:18:00.003+01:00

William woke on Monday with a sore throat. He was totally bemused and troubled by it. Strange really as he must have had several sore throats in the past. Maybe he was feeling so unwell in general that a sore throat was barely noticed. The new healthy and energetic Wills noticed allright! He is so brave about big things but a sore throat or a snotty nose have him running around in circles asking me incessantly to 'help!' and 'do something!'.

He was not himself at all on Monday. No toys came out, not even his engines and the slightest sip of water was obviously painful, so much so that he stopped drinking all together and I had to give him water through his gastrostomy for the first time in several weeks. He was virtually silent all day as he refused to swallow his saliva and had a constant mouthful. I was concerned as last time he became unwell we ended up back in hospital with pneumonia. I called the transplant team who just told me to keep a watching brief.

He went to bed at 6 pm and, after an unsettled first half of the night, slept until I finally woke him at 10am the next morning. I knew the next day would be the make or break day and was relieved to find his sore throat gone. He was clingy, cuddly and very snotty so we spent most of the day cuddling on the sofa, watching Cbeebies. I hate him being ill but it was kind of cosy really once I had managed to reassure myself that he was OK and this was just a normal cold, made worse by his immunosupression. Calpol took the edge of his sore nose and kept his temperature down.

As for today, he was running around again, glugging water and more than making up for the lack of talking he did earlier in the week. He is certainly made of strong stuff!

Hope came back from her French exchange yesterday evening. She walked through the door looking a good few years older than she did when she left, thanks to a new style of make-up and some accesories purchased in Paris. She is growing up so fast. One of the sadest things of the last few years is how much of the closing years of her childhood I lost - she is quite the teenager now. I can make the most of that phase of her life with her but can't get some of those precious childhood moments back. She is not too old for cuddles yet though!

'Gifts of Life'

2009-03-26T00:29:00.003Z

Those who know me know that I never do things by halves. I had a bit of an idea a couple of weeks ago. After testing the water a bit, it has now grown into this...This is my project plan that is now out there in the world and people are already getting involved. It is hugely ambitious but, with a bit of help and support, I know I can pull it off. I am determined to. It could be really powerful and photography is the way I have been expressing our journey for quite some time now. It is time to take it wider. If you can help with any aspect then please let me know. It is going to be fun.

'Gifts of Life'

Aim

The aim of the project will be to capture people waiting for their gifts of life or who have received their gifts. I plan to spend a little time with participants, getting to know by having a cofee, a drink or some lunch or simply sharing a converstion before I get the camera. This is so I can capture the essense of their personality and the imact waiting for or having received their gift has on their life. The photos will be used in exhibitions and will form a photo book to create a piece of art aimed at raising awareness of organ donation. I hope to use this specifically to support and promote Live Life Then Give Life. All participants will be asked to sign a 'model release consent form' to give consent for their pictures to be used. The Photos The photos will consist of portraits, candid shots and shots of medical equipment, medications, treatment or hobbies and activities that are difficult pre-transplant and being enjoyed post. It will depend on what is important to capture to represent each individual. I will take a lot of pictures during each shoot to make sure I capture what is important (oh the joys of digital!)

Time Scales

Most of the photos will be taken during June and July 2009 (once William is out of isolation after his transplant and back at school enabling Mummy to get out and about again ) I may be able to take some pictures with people local to me (London) before then. I want to be able to include people all over the UK but this is being funded out of my own pocket and I don't drive so there will be limitations. Photos will be processed in August and September I hope to be able to hold some exhibitions in December to coincide with Christmas and the theme of a gift. Once the exhibtion has been created it can be put on wherever and whenever there is an opportunity.

Dissemination

The work will be compiled into an exhition that can be reused whenever there is an opportunity. There will also be a photo book that will be sold along side the exhibitions. The book will help offset costs and if there is any profit it will be donated to LLTGL. A facebook group to promote the project will be opened at the end of March 2009 and there will be a blog to enable people to follow the progress and see some of the work in progress.

How You Can Help and Get Involved

By being a participant and being photographed.

Helping promote the project among your networks

Helping organise an exhibition in your locality

If anyone knows of any body or company that may be able to sponsor any aspect of the project, please do let me know. I will make this as good as I can within my own finance but there are a lot of costs involved, especially in printing and framing pictures for an exhibition, potentially hiring a venue and in the up front cost of printing promotional materials and the photo books. Maybe you know of somewhere who would house and exhibition for free? Maybe you work for a company or firm who may be able to offer some sponsorship. I don't have any experience in this are of the project but just have a passion and a burn to create this and use it to promote awareness.

If anyone has any ideas please do let me know. I am not too proud to be helped in anyway or for someone to make any suggestions. Like I say, I just have a huge will to make it happen. It is hugely ambitious but I think it could be really powerful.

The Brightest of Mothering Sundays

2009-03-22T20:14:00.006Z

Mothering Sunday Dawn

You Know I Don't Like Nystatin

Pensive At The Dinner Table

Looking and Feeling Great

After Dinner Games

Today, I had all my three children with me celebrating Mothering Sunday. This time last year, I would never have dreamed we would have seen William looking like this. The first thing I saw when I got up was the sun streaming into his bedroom, bathing it in colour and his little hand and foot sticking up over the cot, pointing towards the drip stand where his TPN is now replaced by a feed that he is absorbing SO well he is putting weight on too fast. We had a roast at lunch time and a 'Grandma's tea' of home made bread and treacle scones with cakes from the Sunday School bake sale. The children really love these meal times (once William has been prized from his beloved CBEEBIES) and often sit playing games while I clear up. William even managed five tiny licks of yogurt.

Hope and I went to a church quiet day yesterday and lit a candle for our donor's family, especially thinking of her Mother. We dedicated Christmas tree lights and Christmas and a candle today. I think light is going to be central to the way we choose to remember William's donor on these special days. That gift filled him with light so it is very appropriate.

Moving up a couple more ladders

2009-03-20T20:19:00.008Z

It has been a crazy couple of days. Yesterday, we headed up the M40 to Birmingham for our first clinic appointment since William's transplant, having missed the first one as we were back on the ward following his pneumonia. All is going very well. We are now able to stop a few of the fourteen medicines he has been on every day and reduce the doses of a couple more. We have stopped an antifungal drug, the drug he was on to thin his blood, allowing it to flow more easily through his new blood vessels, and the drug he has been on for the last few years to protect his liver from the impact of TPN. We did stop this one immediately post transplant but his liver got a bit cross about it. For the first time in a year, his liver function tests are not normal so we can stop it. We have reduced the codeine that works with another drug to slow his intestines so they can absorb effectively and have reduced his dreaded 'nystatin', an antifungal he has to take, kicking and screaming, in his mouth.

As well as the meds, we have also reduced his feed as, after four years of struggling to get weight on him, he is now being over fed by his gastrostomy and putting it on too fast. He is down from 3 to 2 bolus feeds a day so I am hoping he will begin to develop some hunger and be tempted to try something to eat.

The only thing we have needed to increase is his insulin as his blood sugars are still a little too high. He now has to have two injections a day, rather than one, and may need to start another insulin with his feeds. His reaction to that was 'That is not a good change!" My feelings are that is is a very small price to pay for a transplant that has moved him along from lookingand feeling like this:

to this:

So pink and full of life. I still get excited about it every day. Everyone is so pleased with him that we don't have to go to Birmingham until his next admission for scopes and biopsies in April/May and only have to go to Chelsea once a month now. He will continue to have weekly blood tests and be weighed at home. He does still have to stay in isolation until the end of May but time is passing and we will soon be out and about again, not that I want to wish away a single moment of our lives together.

In my last entry, I shared that I was going to take the plunge and put some prints into the competition at the camera club I have just joined. Well, I did and managed to get the maximum marks of 12 for one of William running along the corridoor after a blood and only 1/2 mark short for a portrait of him, entitled 'waiting'. I got merit certificates to stick on the back of the mounts. I was really surprised and very happy. The judge spoke to me afterwards and told me I had an empathy with people when taking pictures and capturing them well and that I should keep going taking pictures of my children and other projects involving people. I am really interested in street photography and 'urban portraits' and hope to concentrate on these areas in my photography course. I also want to develop the work I have done in capturing our transplant journey and have an idea. All will be revealed soon in my 'arty farty blog' so watch this space. In the meantime, here are the two images I entered. I have posted them here before but, for anyone interested, is saves you scrolling through all my ramblings to find them. I love the portrait the more I look at it. A picture does say 1000 words. That was what it was like for William to be waiting. The high resolution version shows the sore lips and the tracks of dried tears. I have taken a lot of pictures of him post transplant but haven't quite captured what life is like for him now in that one single image that says it all. I hope I can soon as the comparison will be a powerful thing.

Busy times

2009-03-17T18:42:00.003Z

Gosh, it has been a week since I last posted! Well, as I said in the last post - we have been living life to the full! The last week has seen me beginning a mega work catch up. I have had a really productive time catching up and moving things forward for The Brompton Fountain I have also been working on my theology course and some photography.

I joined The Croydon Camera Club and am going to take the plunge and submit some of my photos into the print competition tommorrow. It works in rounds and is way in so the points won't count to anything but it will be great to get the feedback. That is what I need as I am developing my skills.

Talking of photos, I have had over 200 printed of all the various aspects of William's transplant journey to put together in an album, some frames and for diaries and work books for my various courses. When the children have gone to bed, I am going to spread them all over the floor and get them into order (why do they never stay in order when they are printed?!). Thankfully, I still have them in dated files on the computer.

Tommorrow will be another big Brompton Fountain work day but I will then start using my organised photo albums and this blog to begin telling our story. First I need to write the article I promised Live Life Then Give Life and, as anyone who has had a look at their website lately will have noticed, I need to re-write our story so that it can be moved from the 'waiting' to 'recipient' section. Then, along with other bits and pieces along the way, I aim to write a book of our story, together with some photos and poems. Oh, and I want to do a more reflective photo book..... now you can see why it has been a week since I last posted on here!!!

Hope, Ellie and I went to a lovely Christening on Sunday. It was so nice to be able to say yes to the invitation.

Almost forgot to say, William is still great. I guess it shows how great he is and how much life is settling down that I did almost forget to mention this. We are off to Birmingham for a check up on Thursday.

Living life to the full!

2009-03-10T20:51:00.006Z

The children having a lovely time at CHASE Hospice at the weekend, and William even licking his fingers after dipping them in yogurt.

I can't believe a week has almost passed since I last blogged. Wills continues to thrive. We can't believe how much life and energy he has not. It is wonderful to see. His personality was always comic and full of fun but he now has a new vibrancy. We spent the last weekend at our hospice and, as you can see, all the children (and their Mum) had a really happy time. I feel a lot lighter now. A lot of worry has gone from all of us. Whatever happens now, it was right for William to have the transplant. Of course, there will always be uncertainties for anyone after transplant but how ever many years he has now will be years of living life to the full. We all are. It feels a lot like life has begun again for us all. Before coming on my blog, I booked tickets to take Hope to see Moya Brennan in a couple of weeks time. I just would not have taken a risk on booking something like that during the last couple of years as it would have been so likely William would have been in hospital when the day came. (As soon as I had booked them I realised Hope is going to be in France on her French exchange 'Doh!' so this will now be a treat for Ellie.)
In my last blog I mentioned how I am trying to put all the pieces together and build my own life. Well, I had a really exciting meeting with my mentor for theological reflection and spirituality in my theology and vocation course. She was really excited by all the material I have collected over the last six months; the writing, photographs and other items. She gave me some fantastic guidelines on how to use it all to create the reflections I need for my course but also to use as the source and foundation for many more projects. I am going to re-start using my 'arty farty blog' - 'MyJourney With William, an Exploration' to share how this work develops so keep a look out over there if you are interested in the creative and spiritual elements of the journey.

Putting pieces together

2009-03-04T21:24:00.002Z

The last couple of days have been very productive for me in terms of work and writing. I have really struggled for the last few months to get things completed. I have been gathering experiences and writing chunks of things but these things were all in bits and pieces in my mind. What I have struggled with is bringing things together to form a complete piece of work or writing. I seem to flit between these chunks and do a bit of this and a bit of that but not really concentrate and bring it all together. I think a lot of it is the stress and intensity of life over the last couple of years and also the fact that snippits of time are all I had to work in whilst I was in hospital with William. I had to adapt to that. I have sat down with the Brompton Fountain 3 year strategy, which ends at the end of this year. I have actually done most of what I set out to do and the rest can be caught up with during this year. What is clear though is that the things I have managed to do lately have been things that could be done in bits and pieces. This week has been good as I have managed again to sit down and concentrate for long periods of time and complete fuller and more complete pieces of work.

Life feels the same. There are lots of bits and pieces that slowly need to be bought together. Some of them are clear where they fit but others not so. What is needed now is time to really reflect and to sit back and get some perspective. Lent is a time when Christians reflect on their lives and how they can be improved in terms of their relationship with God. Lent has never been so timely for me. I am using it to put the pieces of my spriritual life together. One of the books I am currently reading is 'The Day is Yours' by Ian Stackhouse. This is all about living each day at a time and using the natural rhythmns of the day to do so. This is something I am finding really helpful. One foot in front of the other, one step at a time, day by day and concentrating on the here and now. These things have been the biggest lessons I have taken from the last few months and years. I intend to live each day to the full and let those pieces fall into place naturally. The dust needs time to settle before the patterns it leaves behind can be seen.

Beginning to Feel Settled

2009-03-01T21:28:00.006Z

Still pink and happy!

Having fun with Hope - even letting her play engines

Making Thomas cakes

That smile again - meal times are such fun (even if you are not really eating just yet)

A walk in the railway park at the back of our house - we will be able to venture further soon

Hope and Ellie encouraging Wills to lick his fingers after he has dipped them in his yogurt - he did it a few times too!

Having fun building Thomas

It has been another busy and happy weekend. We have been home two weeks today - that is the longest Wills has been home for over a year. We used to get nervous after a couple of days of him being well as it never lasted more than that. Then, we would watch him slowly decline until he was too poorly to be at home, that was as long as he hadn't had a septic shock incident that caused us to dial 999 before then! I haven't quite got that out of my system and keep waiting to find him unwell. I know we will have some worries over the next few years but, right now I am celebrating the fact he has been full of beans for longer than he has ever been in his life. It is hard to relax and remember that there is no reason why he should suddenly get so very unwell so suddenly as he did with all the line infections and I find myself rushing in with the thermometer whenever the poor boy pauses a little too long or looks more tired than usual. I am beginning to feel more settled.

We are certainly getting into routine with the new medical regime and weekly schedules. William has the wonderful Sue, his school one to one health care assistant, during week days but I am only allowed to go out if I am in easy reach of home. So, for most of the time, Addiscombe is my world for the next three months. Well, we have a lovely coffee shop/cafe, a library, three parks, a supermarket, butcher, grocery shop, hairdresser and other local shops in a parade (sadly now minus Woolies - where do you go for that new CD/DVD or birthday pressie for a school friend these days???). I am getting back into my work and writing routine. I do miss other people. It is SO hard not going to church. I miss it so much, especially over Lent. I am hoping to meet up with some friends over the next week - for lunch in that cafe. Paul is around a bit more over the enxt few weeks so I will even get the chance to get into London with my camera to take some shots for my course, to attend some Brompton Fountain meetings and go to some galleries.

Emotionally, the enormity of the last few years has hit home quite hard now I can relax a bit. It was never safe to really get upset over things because, once you start how do you stop? Now, I find I sob at the smallest things. I feel really quite uncomfortable when I think of TPN and all we did and all William had to go through. I know we will have our ups and downs now but at least we have more ups than downs. I feel some guilt about those we have left behind on our journey. For those who never got that call in time, for those we have shared time in hospital with and who lost their fight, for David who shared something of William's journey and had a very special bond with him but lost his battle with cancer so suddenly... so many people. They will always be part of us and close to our hearts. On a happier note, there are also a lot of people who have helped us along on our journey. Many of whom were strangers of new friends at the start and have become close friends now. I am currently enjoying writing lots of letters and cards to those who were there with us, holding our hands, cheering us up and keeping us going. See, there I go again, getting all emotional and reflective... Well, it has been a crazy time and we are getting far away from the intensity now to be able to think about what we have been through and how it will shape our future.

I know I have to use this and I am spending Lent thinking and praying about what I should be doing now. More about that later in the week. I have waffled on long enough and medicines need doing now. Enjoy the photos...

Thoughts for The Camerons

2009-02-25T12:49:00.001Z

David Cameron and his family are in my thoughts and prayers. It is so sad. What a lovely, vibrant boy Ivan looked to have been.

I have actually run out of fingers to count the number of families I know who have lost a child. It comes from living the life we have led over the last few years and making the friends I have made. My thoughts are with all those angels and their families today.

If it were not for one family who lost their own little girl in November last year, we could, by now, have lost our little son and brother. That family are amazing. In their grief, they gave him back to us and , although unknown, we will carry them close to our hearts forever.

Spontaneous chocolate pancake party

2009-02-24T22:47:00.003Z

Yesterday, the girls and I decided to give up chocolate for Lent. We also decided to have a chocolate blow out today and eat lots of pancakes. We are doing the 'Love Life Live Lent' books and have a family book full of activities. One was to hold a pancake party. Before now this would have been a none starter but, why not I thought! At 7pm yesterday, we decided to go for it and each of them could have one friend (as a real party would be too many people around for William). It has been a long while before we did anything so spontaneous!

Hope and Ellie have not had too many friends round over the last couple of years as Wills, when home at all, was too unwell and tea times were dominated by TPN. It was lovely today to be able to properly entertain their friends and spend time cooking them pancakes whilst Wills busied around us all with his new found energy. We had savoury pancakes stuffed with tuna and cheese, pancakes smothered in chocolate and pancakes with lemon and sugar. Everyone was relaxed and happy and it was so lovely. Ellie is off to a friends house tomorrow and Hope has already spent most of the weekend with her friends so they are settling back well.

William did not fancy joining the four girls at the table for pancakes but did have a good few licks of a strawberry lolly this morning, even declaring it as 'delicious'. He is also now beginning to really enjoy having his teeth cleaned so these are very tiny steps towards eating.

Life is there for the taking

2009-02-22T21:41:00.006Z

Playing on the quiet side of the playground

Learning what to do with an egg

A walk in the park

Cuddle with Big Sis

Enjoying the winter sun in the garden

Singing and dancing to 'Mama Mia'
(with two sisters, you just have to join in with these things!)

Joining in with family meal times (even it not eating it yet)

Rediscovering long forgotton about toys

Once again, the story is in the pictures. This was our first weekend together as a family since September, and there were precious few of them before that. It has been lovely. For the first time since William was born we are able to sit down together at meal times. It was always a case before of doing the TPN and then rushing to try and get something cooked for the girls or giving them something already prepared whilst I was doing TPN. William's bed time routine, including the TPN and IV drugs used to take about an hour. Now, we can sit down at 6.30 and eat before I do William's feed and medicine and get him to bed. William has a small plate of whatever we are eating. He plays with it and is learning the skills of eating with a knife and fork. I am sure he will eventually begin to have a taste. He does fully join in with the social aspect of the meal and that is equally important.

We are not yet allowed to take William on public transport or anywhere that lots of people will be. As it was such a lovely day on Saturday, we did venture out for a walk in the park and even managed to find the quiet side of the playground. A couple of children did come on over to join in but I explained things to their parents so William could play for a little while. He didn't keep them from their game for too long. William was really nervous of falling. He does lack some of the confidence he used to have when playing on swings and being put on other toys in the park. It is not surprising really after all his body has been through.

William has been inseparable from his sisters this weekend. He has really missed them. We have all missed each other. The girls have grown up loads, especially Hope who will not leave her bedroom without a full face of make up anymore. I have missed so much of their lives and want to hold on to every minute now. They have been bought up by Mum and Dad as much as me over the last three years and I know that they will always have a special bond with them, beyond that of Grandma and Grandad now. I would never have been able to get through these years without knowing that the girls were safe, happy and being looked after with them. Much as I missed them, I knew they were OK and in the very best hands.

Hope, Ellie and I started to make up for lost time yesterday with a girle night complete with Chinese takeaway, chocolate and the sing-a-long version of 'Mama Mia'. We had a great time. I watched that film in our room in the hospital and found it a bit lame in the story line and more of a vehicle for the songs. I came away thinking I would rather have listed to an ABBA CD. I now know that the film comes alive when watching it with the girls you most care about and having a good old sing and laugh. It is our film of the moment and we have also downloaded the soundtrack. Even William joins in the singing and dancing and I am enjoying singing out loud whilst cleaning and tidying up - something I really missed in the hospital. It is so good to be doing the normal little things in life again.

We ended the weekend with a roast. The last two times I have tried to cook a roast, the food ended up being wasted as we ended up phoning ambulances before the chicken was cooked. Likewise, so many fridge loads of food have been thrown away after being admitted to hospital that I had begun to shop daily to avoid the waste. I am slowly beginning to relax and not feel like the next emergency must be due within the next few days. There will be ups and downs and William will have emergencies in the next couple of years but there is going to be a lot of stability and weekends like this in between. Life is there for the taking again.

The smiles tell it all...

2009-02-16T21:41:00.003Z

William four days before his transplant

And now!

Look at my rosey cheeks!

So much energy to play

There is lots to say about settling back home after the transplant and so many months away. I will blog about finding my floor (eventually!) under the layers of semi unpacked hospital bags, the struggles with getting William's complex medication regime prescribed, the emotional highs and lows of sorting though all the TPN bits and pieces and IV antibiotics that serve to remind how poorly William was before his transplant. I will get on to all of this but, for now, William's smiles say all that needs to be said!

We are home - an intend to stay here this time!!!

2009-02-15T22:56:00.002Z

We are home and William is on tip top form!!! This is a quick blog. The house is a tip - I had to put the bags on the piles and clutter that were the remains the unpacking and sorting last time that was cut short so suddenly when Wills became unwell. I have cleared the space to make his feeds and do his meds and that is about it. Paul cooked a curry and I have had a couple of glasses of wine so now I am pretty sleepy. Off to bed then tomorrow is a day of sorting ourselves out.

The last few days in hospital were very reflective and emotional ones for me - more to come but, for now, we are home. Hooray!!!!

No Mention of the H Word

2009-02-10T20:28:00.003Z

We are not going anywhere tomorrow as William's stoma output is too high. We are persevering with the feed for another day or two and have increased the medicine to slow down his gut. No more speculation. The next time I mention the H word on this blog will be to say we are already there!!

Meanwhile, we held a bake sale for Live Life The Give Life today and raised over £40. I have some lovely pics trapped on my phone. It was loads of fun and nurses, physios and other families made us cakes to sell and nearly everyone involved in the ward enjoyed the yummy goodies on offer. This is a transplant ward so awareness is high, at the moment there are five children in here recovering from recent transplants and at least two who have had transplants in the past. There are at least another two being assessed for transplants. It was great to be able to introduce Live Life The Give Life to people on both sides of the transplant experience.

The exclamation marks below should be question marks

2009-02-09T21:00:00.004Z

Two more sleeps???? William's stoma is pouring a bit since the feed was changed. Please, please stop!!! If it gets close to that litre we will NOT be going home in 2 more sleeps.

Two Sleeps!

2009-02-09T16:46:00.002Z

William's stoma output is just about borderline OK so we are pressing forward and trying the new feed. The plan is to go home on Wednesday. Two more sleeps! Hooray! We seem to be on the easy path for now and, as long as his output stays down and he grows, we will stay on it. Sure, there will be setbacks along the way but we are on our way now

You make some great friends among other parents here. We have seen a fair bit of a lovely family who are experiencing issues with their child who is 4 years on from her liver and bowel transplant. She had an op to clear a blockage on Saturday morning and was really poorly overnight. She ended up in respiratory distress this morning with crash team and everything. Everyone thought her bowel had burst and she was rushed into theatre. All seemed normal so no-one has any idea what caused her to be so critically unwell this morning. These children are enigmas. We all have to treasure each moment we have with them.

Crunch Time

2009-02-07T21:30:00.006Z

OK, lots of prayers and positive thoughts please. William is really well in himself but it is a crunch time. Since we took fat out of his feed his stoma output has been fine. We have now but it back in, but long chain fat rather than the medium chain fats in his previous feed. If he tolerates it, we can change to a 'ready to hang feed (nutrini) on Monday and we will be home by Wednesday, as long as his stoma output and blood sugars stay stable. If his stoma output gets too high (over a litre) we will have to take fat out again and go back to the drawing board. The solution to that scenario may be fat free feed with his fats delivered intravenously - i.e. parenteral nutrition one or two nights a week. This would still be hugely better than 20-24 hours parenteral nutrition a day but it would be such a shame if we had to go back to it at all. His new bowel should be able to absorb all his nutrients and it was until he got the pneumonia. His output is up since the fat has gone in and the next couple of days will be critical in seeing if he can cope with it or not. It really is a cross roads and I so, so hope we go down the easy street. It is about time! If we are forced down the harder one we could be here for weeks more and we all need to be at home together now. So, loads of prayers and positive vibes please....

Thanks so much for the lovely post William has had. It has so cheered him up. I have addresses for most people who kindly sent him things to keep him busy and William is eve more busy now making thank-you cards. I must thank Ann and Steve for the lovely CDs as I don't seem to have your address. The CD a collection of old classic children's songs. Many of them bring back memories of singing them with my Grandparents and William is having a really good laugh to tracks such as 'Jake the Peg' and 'Right Said Fred'.

We did manage to escape on Thursday to play in the snow and make a snowman whom William named Cyril. This picture was taken by Paul. William hasn't been eating snow - it is the foamy saliva that he seems to like to hold in his mouth and refuse to swallow - nice! I do have lots more pictures but they are all trapped on my mobile phone (I can't work out how to send them to my computer by bluetooth). I didn't bring my camera as we thought this hospital stay was going to be a few days, not another month! Let's hope that things work out so as it will only be a few days more.

The date was with...

2009-02-05T08:16:00.001Z

The date, of course, was with Paul. Lee Mead would have been nice but I would have had to tell him that I was unavailable last night. Paul and I have spent very little time together over the last 3 years. I have been living in hospital for long periods, most of the time over the last 18 months and, even when home, most of our conversation has been that of anguished parents over our son. A lot of our own life, dreams and ambitions have gone along in parallel.I'm not sure even how well we know each other these days and, now William has had his transplant, we have to rebuild this part of our lives as well. We have to start at the beginning ans see where we go. So, yesterday was a 'hot date' - one rule - William was not to be the subject of the conversation. We learned things we had missed about each other over the last year as well as things we had misunderstood. It was an important thing to do.

Hot Date?

2009-02-04T18:27:00.002Z

Thank-you so much those who have sent William cards, letters and bits and bobs to do. He was particularly fed up with life this morning, particularly blood sugars tests, insulin injections and generally being poked and prodded. The post arrived with a big pile for William and it really put a smile back on his face. He is so touched that people care enough to write to thanks.

He is likely to be here another week. Having come to the conclusion that it is unlikely (they never say never) he is experiencing any rejection at the moment and doesn't seem to have any infection, we are not experiementing with his feed. We test his sugar absorption each day and that is fine, fine enough to send his blood sugars up too high as well! Protein is easy to absorb so the finger is pointing at the fat. He has had fat removed from his feed for the next 48 hours and, so far, his output is back to normal. If this remains the case, we will try a different sort of fat. He remains fine in himself but this tweaking takes time and is frustrating.

I have a hot date tonight so watch this space....

Asking a couple of favours...

2009-02-02T11:48:00.002Z

William's stoma output looked settled on Saturday and the consultant said we would go home if it stayed like that for a couple of days. William is very sensitive to such 'fate tempting' comments. One of the Chelsea consultants is famous for ending the Friday ward round with 'have a quiet weekend' to which William almost always did the exact opposite. The most such comment was the night we got the call when we had been discussing whether or not William should be suspended whilst in theatre having his perforated bowel fixed. Another of the Chelsea consultants ended that discussion with 'It doesn't matter anyway, you'll still be waiting in 6 months time.' We all know what happened just a couple of hours later!! Well, saying such a thing about the stoma output was just one of these occasions and William poured out more than ever in the last 24 hours. We are exhausting possible causes and William seems well in himself so we are beginning to reach the conclusion that it is just the way his bowel is at the moment and we need to adjust his protocol from hospitalisation and IV fluids above 1 litre output to 1.5 litres. First, we need to further observe his pattern and make sure it is a safe decision so we will be here a bit longer than a couple more days. It is likely to be the end of this week or beginning of next before we can go (of course, if his stoma output does settle it could be earlier).

There are a couple of things I would love it if you could do for us. The first is quick and easy. William had a lot of post after his transplant and then, of course, it was Christmas. The daily post really cheered him up and he is a bit fed up at the moment. He asked me for some letters at the end of last week but I was hoping we would be home quicker than post would reach us. Now we know we will be here a few more days it would be great if some of you could send him a card or a quick letter.

The address is
William M
Ward 8
Birmingham Children's Hospital
Steelhouse Lane
Birmingham
B4 6NH

The other thing will take a bit more time but will be lots of fun. The lovely people at Live Life Then Give Life are raising money to help them with their organ donation awareness work by asking people to hold a bake sale on Valentine's Day. Please visit their blog here for more info. I would do this but it may be tricky timing if we are only just home so I am hoping some of those who have been following our story here may do one instead.

Thank-you.

Time Out

2009-01-31T22:52:00.003Z

Following my meeting with the consultant on Wednesday, I have been sitting back and letting staff do William's meds and blood sugars etc. I am actually quite enjoying it and it does allow more time for cutting, sticking, painting and making pasta robots... (from the Mr Maker CBeebies web page). One of the key reasons he was keen for me to do this is to learn to trust the staff to...leave William for a while! This I have now done on a couple of occasions.

On Thursday (I think, days and dates run into each other a bit in here!) I left him to meet 'LB' and 'V' from 'Fetch'. I had a lovely meal that didn't come out of a plastic microwave packet and relaxed enjoying conversation that wasn't all about hospital life. It was so nice to talk to other adults and be in a family situation and away from the intensity of life on the ward.

Yesterday, I took an even deeper breath and left William overnight, returning this afternoon. The reason of course, to go and see the girls and Mum and Dad. I haven't seen Dad for ages and ages, haven't spent any real quality time with Mum and have not seen my other children since Christmas. It was hard leaving Wills but the looks on their faces made it totally worth while. We had a lovely time together and I enjoyed more home cooked food, especially today's brunch (yum yum). Mum and Dad have done a sterling job in looking after and parenting Hope and Ellie over the last couple of years when Wills has been in hospital, often for several months at a time. They are very relaxed and happy there but I do miss them so much. It was hard leaving Wills alone at the hospital but I needed to be with the girls for a while and chose a morning when I knew he was being looked after with a nurse he knows well and likes. She was looking forward to some fun with him but he has not been quite himself today. I hope he isn't brewing up anything else as he was coughing and wretching quite a lot. We are certainly not having the hardest but are not having the easiest time with William's transplant recovery. His stoma output is still high, despite increases in medication. Hopefully, it will settle tomorrow after the new regime kicks in a bit more. If so, I am guessing we will be home sometime next week. If not, it will be back to the drawing board.

I have recognised the need for more time off the ward and am now sleeping in the hotel, rather than chilling there a while and returning to sleep on the ward. It is good to leave it all behind for a while at the end of the day and I can be back in 5 minutes if William needed me.

Update before a break

2009-01-29T16:22:00.002Z

Quick update today as I am off for a night away from the hospital this evening with the lovely 'LB' and 'V' from Fetch.

William's stoma poured yesterday and this morning so he ended up back on IV fluids this morning. He will start on another drug today to try and slow it down. His blood sugars are settling but the diabetic team came to review him today and increased his insulin by a unit (while I was out buying him a baby doll to stop him playing with the rather mucky one he found in the corridor and adopted!).

William is bored and fed up as he is very well in himself. I have a room in the hotel from tonight though. My name had not been added on the list so it took a while to get. William sleeps till 8 at the moment and, with the nurses doing his morning meds, I am looking forward to enjoying the treat of sleeping at the hotel and having some 'me time' before we get home. I am hoping that will not be too much longer so we can all be together again. Mum and Dad have done a sterling job in taking care of the girls with their winter viruses and emotional ups and downs through the last few months but I do miss them and wish I was with them through all of this myself. You do miss so much of the siblings' years that can't be re-created when all has calmed down for the 'sick' child.

When you take that away I am....a Mummy!

2009-01-28T22:18:00.003Z

It doesn't look like we will be home this week. William'sblood sugars are settling nicely and he is such a star taking his insulin - he sat there really still for me this morning. He is getting involved in his blood sugar testing and scoops the blood up onto the test strip before watching for the numbers. His stoma output has not been so settled today, indicating that some more tweaking of medication is required.

I was called to meet with our consultant today. He oversees all the small bowel transplant children and meets with parents to keep us up to date. These meetings are often a lot more than just medical discussion. Having a transplant is a life saving but also a life altering event. The commitment is for life and the relationship that begins with the transplant team on the pre-assessment visit is also for life. Our consultant is as interested in sorting out any concerns, no matter how small, that may impact these commitments and relationships as soon as they arise. Everything seems to get back to him - he is all knowing and very perceptive! I have been looking stressed apparently. I have been stressed, I think anyone reading this blog would have picked this up. I have been disorientated from being home briefly, back in our Chelsea Pad and then back here. Coming back here unlocked a whole heap of emotions and it has been hard being away from Hope and Ellie when they have had some growing up issues and some nasty bugs themselve to deal with. The biggest thing has been that Paul is busy working at the moment so, apart from a quick dash for a sandwich or answering a few work emails when the teacher is working with William, I have not had any breaks from being with Wills over the last couple of weeks. I didn't think I particulary looked stressed though but, as I said, people are perceptive!

One of the things I find hard from being between the two hospitals is that I do everything for William, all his cares, meds, TPN in the past and, in our local hospital (not the Chelsea Pad) I usually end up doing most of the IV antibiotics too. Here is very different. All tests, such as blood sugar monitoring and urine testing is done by the nurses. When we came in, I was doing all the medicines but the nurses preferred to do them on some shifts. I find it really hard to sit back and have someone else do these things as they have become part of my parenting of William. It is like someone saying that they will dress him and change his nappies today. Today, the consultant asked me to let them do all the medicines as well and just view it as a break. I said it can feel like you are not trusted when you do them all at home and other hospitals, and had been doing them here initially but was assured it is not that or we would never have been allowed to take him home. When parents look tired and stressed, the team like them to take a break and hand the care over so they are refreshed when they get home and have to do it all. I have already enjoyed the fact the special feed is made for us here. Why should I view the meds any differently? I still physically give them to him but they arrive on a tray all drawn up for me! I was forced to consider that feeling that they are taking something away that is central to what I do for William, central to my role in life. When you take that away, what am I? A Mummy of course! I am not a nurse, although it feels that way a lot of the time. I am a Mummy and a break from the meds means a rest to do some of the things I want to do, like reading and writing but it also means more time to play games, colour in, kick balloons around the floor, blow bubbles....be a Mummy! It also helps to build the confidence in a team who will be closely involved in William's care I hope until he reaches the time to transfer into adult care. I can't be with him all the time. He has two sisters who also need me, I have a job to do and there are some coffee shops and an art gallery here in Birmingham that I would like to spend some time in during our visits here. I felt a range of emotions about this today but ended up with a feeling of relief that almost had me in tears in front of the consultant and the nurse who was with us. It is time for William to begin to learn that he can't have Mummy every second of every day when he is in hospital and there will be times, when he is well enough, when he will be left for a while with nurses he knows and trusts while I spend time with Hope and Ellie, go to a work meeting or just take a break to do something away from the hospital.

Here's to tomorrow morning when I get to enjoy a leisurely cup of tea with a book and radio 4 while the nurse draws up the morning set of ten medications!

Things are settling

2009-01-27T22:38:00.005Z

William is doing very well up in Birmingham. For some reason, his new bowel is moving a fair bit faster now than it was in the first few weeks after his transplant. This could be due to whatever bug or virus caused his pneumonia or any number of reasons I guess. We have been increasing the medication to slow it down and it looks like it has worked, fingers crossed!

Despite his bowel having been a little bit naughty, it has been absorbing enough glucose to send William's blood sugars up a bit too high. After two weeks of waiting for them to settle, we finally started on a tiny dose of slow release insulin this morning. It seems to have worked. His sugars were similar to yesterday all day but the last one an hour or so ago was 5 - spot on! We just need to wait a day or two while the insulin settles down with his own system as he is still producing insulin and just needs a little helping hand. It is rather tricky to inject insulin into a wriggling and protesing child. I wimped out today, opting to hold him on my knee while the diabetes nurse injected him. I will try again tomorrow and am planning to work his injection time to early morning so I can give it before he wakes up.

Once we are sure the insulin dose is OK, that his stoma output has settled and his tacrilimus (anti-rejection drug) levels are stable we will be able to go home. This could be the end of the week or start of next. William is as well as he has ever been and desperate to get home. He is playful and chatty to the staff and they are finally seeing the William we all know and love. He is being a bit too playful and has only just fallen asleep (it is 11 pm)! It was so lovely to see at first that I was a bit slack in clamping down on bed time. I have nowhere to go in the evening either so am here, preventing him from sleeping so I am sure he will settle back at home and in his own roo,.

I am at least as desperate as he is to be back in my own home and in control of life again and the girls are getting to the stage when they really do need to be back with their Mum and their friends. I am so looking forward to being able to be Mum to all my children. It is so hard having to try and sort out their growing pains and sooth away colds and upsets over the phone! I am hoping that we will be settling down as a family again by Saturday week. I have lovely visions of Wills in bed and enjoying a take away and a teeny chick flick with Hope and Ellie, in our PJs and enjoying some much needed girly bonding!

The end of today and the beginning of tomorrow

2009-01-24T20:12:00.003Z

I didn't get that restorative sleep last night so I am blogging early before curling up with a book and trying again tonight. William woke a couple of times in the night, sore after his endoscopy. We both got to sleep again but were woken at five as his feeding tube had come unattached and several hours of feed, together with the contents of his stomach were in puddles all over and under the bed. Wills is now in a deep and calm sleep so I am hoping for a better night tonight.

I am still very relieved that Wills hasn't any rejection but today has not been a good day for him. He has been struggling with thick, slimy saliva in his mouth all day and just won't swallow it. Needless to say, he has been very quiet! He has been out of sorts too. Not surprising really, as his blood sugars have been in the 20s at times, I would feel pretty lousy if mine were so high. An explanation for this hike came with today's tac (tacrilimus, an anti rejection drug) levels. William's are high enough to be toxic and, as this this drug is the likely culprit for the increase in his blood sugar levels, this could explain a lot about how he has been feeling and behaving today. I googled (naughty girl!) tacrilimus and blood sugars and have found that one study showed that 20% of kidney transplant patients needed insulin due to 'tacrilimus induced diabetes' and that the mean onset for this was 68 days post transplant. William's transplant was just over 2 months ago so I think there is a strong chance this is what he has, especially as me being type 1 diabetic puts him even more at risk. The team here are still watching and waiting and hoping I guess that it has been due to him being unwell and now the high tac levels but the pattern has been consistent with sugar levels steadily increasing (apart from today's jump) for the last two weeks, despite his recovery from the pneumonia and a week of tac levels that were too low to be of any clinical use. I just want to get things sorted so he can be made to feel better and we can all go home. The good news is that William's stoma outut appears to be settling a bit (although he does tend to pour a bit overnight at the moment so I hope I haven't spoken too soon).

I managed to escape for half an hour today to get Wills a Thomas DVD that I couldn't actually find - bring back Woolies - they were lined up in there!! I did buy a few bits and bobs to keep him occupied. Magic paper, crayons and paint are a real favourite at the moment. If you have children then I strongly recommend them. The paint and pens only work on the 'magic paper'. William was given a magic painting set just before Christmas and it is one thing he will pick up however he is feeling so I bought in reinforcements. I also bought in reinforcements for me in the shape of two more Jodie Picoult books (the author of 'My Sister's Keeper, something I gloriously managed not to mention yesterday). Her new book 'A Change of Heart' was half price and is about organ donation and transplant so that will be interesting. I also picked up Cecelia Ahern's 'Thanks for the Memories' as this is about received memories following a blood transfusion. The idea of taking on some aspect of a donor's memory is interesting. William has a total obsession for strawberry flavoured food, something he never displayed before his transplant. We thought it would be biscuits that he wanted as these were his obsession for 'smelling' but, no, strawberry yogurt is the real thing and the only thing he has dared to put in his mouth and actually swallow so far. I will be interested to see how this is treated in the book as it is something I would like to explore in a piece of fiction at some time.

Talking of my writing. This blog has been too busy since we came home for those two short days to have given me the space to celebrate my personal bit of news. Among the post that welcomed me home were two cheques for accepted short pieces and fillers I had submitted and a complimentary magazine containing a feature I sent in 'unsolicited' some months ago. The article is in this months 'Woman Alive', a Christian magazine that can be found in Christian bookshops and online. I am now well and truely a paid up, professional, published writer. Now I need to keep up the momentum, along side that I am slowly managing to regain in my main job. One of the key things that struck home in 'My Sisters Keeper' is the way the mother had totally lost all touch of what and who she was before she became Mum to a sick child. I will come back to this in a later blog but it has given me a wake up call to re-form and strengthen links with the woman I used to be and, where this is no longer possible, look for new avenues to be she that I want to be, she who exists outside the constraints I have found myself in. Of course, there are many other messages in the book about the impact on siblings and relationships etc and I will come back to that. I can't do much about those until we all get home but finding 'me' again has been a recurrent theme in this blog of late and something I can begin to work on right here and right now!

Big Sigh of Relief!

2009-01-23T22:52:00.003Z

William had his endoscope and biopsies today and all looks good - NO REJECTION!! I am hugely relieved. We have to get on top of his high stoma outut and the blood sugars but these are just a matter of tweaking. It looks like we will stay in Birmingham for a few more days at least to sort these things out. I will blog more tomorrow as I am about to get the best nights sleep in ages now we know all is well.

I would have blogged more earlier in the evening but have been stuck in one of those books you just can't put down until you have finished it. Have you read 'My Sister's Keeper'. If not, beg, borrow or buy a copy, especially if you are Mum to a child like William. You will see yourself and your family on every page and it will be a huge eye opener. I will blog more about this tomorrow as well but, if you stumble across a copy in the mean time I strongly recommend you pick it up.

Back up the M6!

2009-01-21T23:08:00.002Z

We are going back to Birmingham tomorrow (as long as there is a bed!). William has been consistently showing signs of rejection since Friday and so it is time to get some biopsies and see what is going on. This is another worrying time but very much something to expect from time to time, especially with bowel transplants as they seem to carry higher risks of rejection. We have to wait until Friday for the biopsies and should have some results by the end of the day so it will be another tense couple of days.

We will be closely monitoring William's blood sugar while he is away as his levels have been on the high side. At the moment, he has 'glucose tolerance impairment' - not 'yet' diabetes but it looks like he will need to be started on some insulin injections. This may be a transient thing or may be the beginning of diabetes bought on by his anti-rejection medication. He is being such a good and brave boy while we prick him to test his blood six times a day and every four hours over night. We were due to start insulin tomorrow but, given that we will then be in the back of an ambulance on the M6, we all agreed it is not the most sensible timing! His sugars are not dangerously high so a few days longer will be OK. They will either sort it in Birmingham or we will be back here in Chelsea after sorting out his bowel up there. We still have a bit of a way to go before we are back home with the girls again. Wills is great in himself though - the best he has been in a long time.

The Last Week

2009-01-18T21:49:00.005Z

It has been quite a week and I am feeling totally drained and exhausted. It is now 10pm and William is sleeping soundly and peacefully - that is a fantastic first in recent days and I am hoping to be able to follow him into some restorative dreaming very soon.

Well, my little fighter has done it again - he managed to get to the point where a trip to intensive care was being seriously considered and bounce right back up again. To the huge relief of all of us and all the doctors and nurses here, he is now off oxygen and back to his happy self (most of the time, he is growing more cross with anyone approaching him with a needle or to put painful drugs into his cannula but, after all he has been through, who can blame him!). He now has no central line - a great step forward in general but he still has difficult venous access and it has taken about 12 cannulas to get him better. His poor arms are black and blue, which must be due to the steroids and the drug given to keep his blood nice and thin to avoid clots in the vessels forming between his own 'native' bowel and his 'graft' or donated bowel. We are all heaving a huge sigh of relief but it has left me scarred and nervous when I consider what could have been and how quickly he became so ill, despite all the isolation and protection. It serves to show how vulnerable life post transplant can be and I am looking forward to enjoying life at home with my children so as to make the very best of every minute we have been given back together when William received the gift of his new bowel.

We may have to wait a little bit longer for that to come. I woke early (having been woken up by William's wordless protests at having his IV antibiotics given) on Friday morning to see William's stoma bag full to burst. There was about three times as much as usual for the night so I tested it to see if there was any sugar in the fluid. A little bit, although not ideal, is acceptable at this stage post transplant but more than 2% can indicate rejection as the bowel is no longer absorbing as effectively as it should. A rejecting organ will begin to fail and this is the first sign. The test involves mixing measured drops of the stoma stool fluid with water and dropping in a tablet. This fizzes about and then settles into a colour - blue being negative, bright orange indicating over 2% sugar with a scale of bottle green to orangey browns in between. So far, we had seen blue and the occasional shade of green. That morning, I watched in horror as it turned bright orange! I was conviced William was in rejection. Our shared care protocol sets out clearly what to do so the doctor was paged and a series of phone calls made to consulants here and in Birmingham. I do apologise for them being woken at 5.30am - if Wills hadn't woken me this would not have happened until 8.00! I was so frustrated that no-one was immediately ready with the strong IV steroid needed to hault any possible rejection. Phone calls continued during the day, our gastro SHO was a total star! The message from Birmingham was that they didn't think we needed to assume rejection at this stage and to watch and wait. I was so upset, worried and frustrated at this as I know how quickly damage could be done. I couldn't understand why we weren't acting when William had high stoma output and over 2% sugar - this was exactly what we were told to assume as rejection! I kept thinking why risk William's new bowel. I felt even more worried when we discovered that the level of William's anti-rejection drug in his blood had been way too low for the past few days.

Saturday was a similar day but our lovely consultant was on duty in Birmingham and called the team here himself. The nurses were most impressed with him as it was them he wanted to speak to to ask how they felt William was in himself as this is the key indicator as to why they were not instantly assuming rejction. He called back later to talk to me and, although I am still concerned, he did put my mind at rest as to why they are taking the actions they are doing. On balance, it is not sensible to give William a big dose of steroids to dampen down in immune system even further than it is while he is recovering from such a nasty bout of pneumonia. In this kind of situation, he would be bought to Birmingham for an endoscopy and biopsies from his bowel. This would involve a 'special sleep' and this is also not ideal when his lungs have taken such a battering. Given that he is well in himself and has no fever, it is most likely the sugar and increased output is due to him having been so unwell and, on balance, it is best to watch and wait. He did share my concerns that this could lead to some damage if it is rejection. It is one of those tricky balances of pros and cons. If things don't settle with an increase in the drugs William takes to slow his gut down to enable maximum time for absorption, we will go up to Birmingham in the next few days to further explore what is going on. I did feel much better after my chat on the phone but I am still concerned about rejection, although less so. I will be relieved when the tablet turns blue again.

Sugar is a bit of a theme at the moment as William's blood sugars have been high at times after his bolus feeds during the day. His anti-rejection medicine can cause diabetes so that is a concern. He is now being monitored by the relevant specialists - probably the only team here who haven't yet been involved with him so I reckon he just wanted the chance to say hello! He may need a little bit of insulin but I think the plan is to first tweak his feed regime to fewer, smaller bolus feeds and change the recipie to reduce the amount of sugar in it. It may be that he is also getting rid of unwanted sugar in his stoma stool, after all, he must be absorbing enough to enable his blood sugar levels to increase like that.

So, William is over his nasty chest and we are over a big scare but there are a few things now that need exploring and tweaking. We may be transferred back to Birmingham or may stay here with the local team acting on the transplant team's advice. Either way, we all need a bit more of that patience, especially the girls who were so looking forward to coming home. I miss them so much. I hope we can sort things things out quickly and get home together but I want to make sure he is really well and won't bounce back in this time.

Now, for that rest and early (ish now) night!

Not the best start to life post transplant!

2009-01-14T21:42:00.002Z

This is not the start to our post-transplant lives we had hoped for! William has pneumonia in both lungs and has been really quite poorly. We thought for a while he may have needed support from some form of mechanical ventilation but, so far, he has held his own with the help of a fair whack of oxygen. Things are settling now and we are keeping everything crossed that he doesn't get any secondary infection or rejection.

Rejection is a big risk as the immune response he mounted to fight the infection is exactly what we are trying to suppress. There is a real threat that he could attack his new bowel as a 'side effect' from attacking his infection. One sign of this is to find sugar in his stoma fluid, as a result of the bowel not working and absorbing so effectively. William usually has no sugar or 1/4 percent. He is up to 1 percent today and 2 percent is indicative of rejection. I am hoping this is due to him being unwell rather than the start of rejection. Most small bowel transplant recipients experience some level of rejection in the first couple of years and I am confident we will get on top of any such opportunistic rejection if it does occur. What concerns me more is the fact he has some fluid in his abdominal cavity (ascites), something he has not had before. The team here feel it is secondary to the pneumonia and the fact he had poor renal function when he first got to the hospital. This has settled in his blood tests now but he was really thirsty and dehydrated in his bloods yet overloaded in terms of his fluid intake and has put on 2kgs of weight in 2 days (from 15-17 kg) This fluid had to go somewhere and can end up in places such as the abdominal cavity. This is very painful for him, as is the pneumonia, so the poor thing is in a bit of a state. He so deserves some happy and healthy times to enjoy his new tummy. I hope they are just around the corner and will be here to stay for a while.

Shortlived!

2009-01-12T00:04:00.002Z

We are no longer home! We are back in our 'Chelsea Pad' as William has 'sepsis', an infection and is pretty poorly. We don't yet know what it is. He hasn't been right since we were home. I will blog more later about the last few days. Right now I am exhausted, concerned and disapointed to be back. It is somewhat disorientating to be back here so soon.

We are home!!!

2009-01-08T21:49:00.002Z

I am excited, happy and terrified. We are home :-) Birmingham seems a long way away which is nice and scary. The house is chaos with a little organised area for making the feed and doing meds. We have been told to expect a few emergency admissions in the first year and have to go back for a routine admission in about 3 weeks time, but for now - we are home!

I had a lovely parcel of Nespresso coffee pods waiting for me. I don't know who sent them but am guessing it is because I mentioned them here. Whoever it was - thank-you so much. They will be (are being!) very much enjoyed. Thanks loads to to Paul's lovely Mum for cleaning, sorting and filling the fridge. I knew it was you as Paul would never have thought to make sure there is soya milk so I could have a cup of tea when I walked in. The cake is lovely.

We are going home...

2009-01-06T21:40:00.004Z

...on Thursday. I am so happy and also excited and just a teeny tiny bit nervous. I can't wait to have us all back as a family again. The discharge meeting was daunting. Everyone this end was sitting round a small table with a triangular microphone in the middle. The Chelsea and Westminter and local Croydon teams joined in on conference calls. At the start, our consultant here said he had no date in mind. Then, out of the blue and to the surprise of his colleagues as much as everyone else, he announced we were going home on Thursday!! We will be seen once a week, alternating between Birmingham and Chelsea initially so we will be back here next week. In three weeks time, he will be back in for an overnight stay for endoscopy and biopsies and this will be repeated every 3 months. This means 'special sleep' every 3 months which will not be at all appreciated by Wills! We have been told to expect emergency admissions as the first two years post transplant are vulnerable ones and problems can and do arise. We are going home though and we can take everything else in our stride. The only slight concern is that William's stoma is getting increasingly swollen and prolapsed. It is OK for now and we hope it will stay the same before pulling back in as he grows. If it gets much worse he may need another operation to re-fashion it. I am hoping this will not become necessary!

I am feeling very reflective about all that we have been through. It has been a tremendous journey and our arrival here seems an eternity ago. I want to remember everything about it and will be writing copious notes to record every detail over the next few weeks and months. I'm sure some of my musings will be shared on here. In the meantime, I am thinking about home and the things I have missed the most and am most looking forward to:

1. Is, of course, being with Hope and Ellie!!

(others, in no particular order)

having friends round
cooking
singing along to my i-tunes playlists outloud
space
wearing different clothes to the ones I have lived in for the last 3 months
my nespresso cofee machine
freedom, being able to go into the kitchen without waiting to be let back in again
being able to be spontaneous and do something else other than the books and things I have with me

I really miss being able to go to Church, go shopping and generally get out and about but they will all have to be worked around Wills for the next four months as he is unable to mix socially until six months after his transplant. I will have to be inventive and think of lots of ways to entertain (healthy) visitors at home so do let me know if you are planning to be in the Croydon area any time in the next few months.

More Than Just a New Year

2009-01-05T22:50:00.003Z

I have talked a lot on here about our very special Christmas. New Year was another amazing experience for me this year. Having spent three of the last four Christmasses in hospital, we have also seen three New Year's in during a long term hospital stay. Many people have spent a New Year celebration with the feeling that everyone else is having a party that they were not really invited to. New Year in hospital can really exacerbate that kind of emotion.

My first hospital New Year was during William's initial long stay when he first went onto TPN and we began to learn of the extent of his medical condition, including he fact that he would, ultimately, face the need of a transplant to stay alive. Paul was off to a party with some old friends and singers. I went along too. It was a great party but one of the worst evenings of my life. I had lost all the skills I needed to mix with this group of confident and charismatic strangers. I lurked in the corner, watching Paul and all his mates share fun and enjoyment that came so easily to them but that I seemed unable to raise within myself. Paul and I had a massive row on the way back and I ended up on a bus alone. One of the party games had been to ask questions to guess each other's favourite book, film etc. I had the feeling that I was just tagging on with Paul and no-one was really interested in mine. I was telling this to the nurses when I got back and one asked me what my favourite film was. This resulted in an animated discussion of films, books and actors. I remember how sad it made me feel that I had become more socially comfortable sitting at a nurses station on a children's ward than in a house party. I have never been that good in a room of strangers but would have usually managed a lot better than I had. I will never forget the emotions I experienced that night.

Last year, Paul and I tried to have a special New Year. Once again, William was pretty unwell and we were waiting for his illeostomy operation that would happen when the full surgical and gastro teams were reassembled after the Christmas and New Year break. We did OK, having a meal together and then walking down to watch the fireworks over the Thames. We were going through the motions a bit though and neither of us could say it was the best New Year, especially as we were worried about William at the time.

This year looked set to be another disaster. I didn't want to be alone and Paul didn't really fancy travelling up when neither of us had any plans of what we would do here. We would likely have ended up wandering aimlessly, once again watching everyone else have fun. My lovely Christmas Fairy, Aunty P, gave me a Parish Mag for her church. She had told me about this wonderful 'Candlelight Church' that takes place each week and I really wanted to go and experience it. Unfortunately, the timing would make it just a bit too early to have settled William and travelled there. Looking throught he mag, I saw there was to be a special Candlelight Church on New Year's Eve. I felt that this was the perfect way for me to see out this amazing year and look to the future. The reflective and religous mood would be just right for me and I felt I really had to be there. Paul was pleased as it gave him a free pink pass to spend his idea of a perfect New Year with his mates. I did get a bit sad that we were to be apart during the days leading up to it and did ask him to come here afterall, which went down like a ton of bricks! If he had of come, I wouldn't have experienced one of the most amazing New Year's ever.

I had met the girl who organised the evening when she came to visit me with Aunty P. Her husband very kindly picked me up. It was a misty and icy evening and I suddenly felt really vulnerable waiting outside the hospital. It has been such a long time, many years since I last went to a social event with strangers, probably that New Year's eve in 2005. I worried about being so far away from William, what if we crashed on ice or into a drunk driver.... I felt better as soon as I was on my way. The church was beautiful. Inside were Christmas trees on each window ledge, a large one at the front and candles everywhere. It was magic. I was given a coffee and asked if I would read in the Taize service that was to proceed the communion service to see in 2009. My reading from Isiah 43 could not have been more perfect. "Forget former things; do not dwell on the past. See, I am doing a new thing!" It is easy for those non-religious people reading this to say that, of course a New Year church service would focus on hope for the future and all things new but I was very aware of God talking to me, reassuring me and reaffirming that He wants me to look for how I should be using the experiences I have journeyed through in the coming year and those that follow. I felt an incredible sense hope, peace and calm.

Just as well I felt calm really as the next thing I was asked to do was sing...solo! I haven't sung alone in public for a very long time. I had 5 minutes to think of what to sing during the peace in the communion service to follow. There was no time to find something I could be accompanied in so I chose the Taize chant that says 'My peace I bring you, my peace I leave you. Trouble not your heart, be not afraid.' William's transplant has saved his life and our family. It has given us a future. However, with that will come enormous challenges and change. Our family has been fragmented for the last three years. We are about to come back together again which is fantastic and I just can't wait. All large change, even positive, brings stress and uncertainty. I also have to find my way in the world again. I have lost a lot of who and what I was before. I was thrown in the deep end on New Year's Eve, reading and singing in a group of brand new people. I don't believe that was an accident. That filled me with confidence for the coming year. Our family will learn to be together again. We will have our moments but we will get there. I will find my feet and build my own life again. I have talents and gifts that have been put away in storage and are a bit rusty but they will get the chance to be aired again this year. It isn't just a new year this year. It is a new start, a new life. I am excited and I am nervous. I know that I will be made into something new but I also know I need to take time to reflect and recover. I was delivering the messages to myself in the words of that reading and that song.

Feeling Magical

2009-01-04T23:31:00.004Z

William and I were both sad to see the end of 'Christmas on CBEEBIES' today. All the Christmas songs had been replaced by the usual ones about numbers and recycling. Couldn't they have given us one more day of the festive stuff today? They sing about the 12 days of Christmas so they could have kept the song going until they were all over. Outside out door, all the Christmas decorations were being taken down and the bedspace occupied by the tree reopened. Normal business has been resumed with planned admissions for surgery, assessments and routine biopsies. There has been a really homely atmosphere on the ward over the last couple of weeks. The main bay had a huge tree standing next to the TV with a table of nibbles beside it. It really did have the feel of a living room.

I always feel a bit sad at the end of Christmas. I have a tradition to take down the decorations (which go up on December 1st) on the evening of 12th Night. I have one final little Christmassy moment with a glass of sherry and a mince pie whilst I watch, listen to or read something festive. Then I take it all down. I was going to do the same tomorrow but William fancied watching 'The Snowman'. We switched off the lights and huddled together beside our little tree. I didn't have my sherry but did nibble a mince pie as we watched it. I read on the side of a packet of Marks and Spencers mini mince pies that tradition holds that it is lucky to eat a pie on each of the 12 days of Chrismas. What a great excuse! 'The Snowman' is my ultimate film to induce the feeling of Christmas magic. It never fails. I found myself reliving the amazing Christmas we have had this year.

When you are an adult, something of the magic goes out of Christmas. It is still a wonderful time of year and there is lots to enjoy but the enchantment is left behind. This year, I found that magic again. It was amazing to be together with all three children again and being together made it truely special for all of us. We were forced to strip Christmas down to what is really important. In fact, we have all rediscovered what is really important about life. I am sure that this magic wil remain with us. We felt like the luckiest family alive on Christmas day. It was wonderful and that is the feeling I was reminded of whilst I sat with William today. I wanted to capture every element of how I felt and how this Christmas has felt. I want to remember it, to hold onto it. I am sure I will.

Transplants change people in amazing ways and change those close to them. I remember an image at the 'Transplant' art installation I went to with Hope. It was of a pair of twins and it was the twin who had not been transplanted who had experienced the biggest emotional journey. We have all been changed in the last seven weeks. We have all grown and I know that I feel very different inside than I ever have before. It is more than just raw emotion that will only exist at this moment in time. This experience has shaped me, is shaping me. I am looking forward to seeing where this will take me in the next twelve months.

In the meantime, we took our decorations down after our 'Snowman moment'. That was more than sufficient to be my last moment of Christmas magic. The cards on our walls and notice board have been replaced with drug and fluid balance charts. This is the week where I begin to get really organised with all the elements of William's care. I am hoping all this will have fallen into my responsibility by the end of the week. I am hoping we will be at home.

Once again, the pictures tell the story

2009-01-01T23:09:00.007Z

16th November, four days before William's transplant and on a day good enough for us to escape from the hospital to a nearby playground for a while during his couple of hours off TPN and IV antibiotics

January 1st 2009, six weeks after transplant

Escaping isolation to make the most of a deserted hospital playground on a cold New Year afternoon.

HAPPY NEW YEAR!!! May 2009 be happy and healthy for all of us. I had a quiet, peaceful and reflective close to 2008 and beginning of 2009. Above all, I feel full of hope for this year and have not felt as relaxed, positive and confident about myself and the months to follow in many years. I will blog about that tomorrow but, for now, I don't want to detract from the power of these pictures.

Home Straight

2008-12-30T22:39:00.005Z

Wills is continuing to do really well. So well in fact, that we are now on the home straight. We have now entered the discharge planning stage. With something as complicated as a transplant, it is not a case of simply saying that you are fit to go home and off you go with a bag (a very large bag) of medicine. William's initial post-transplant care will be complex and involve a lot of people here in Birmingham and back home. A discharge planning phone conference will take place next week, at the earliest opportunity when everyone is back from Christmas and New Year leave. Feeding equipment, medicines and the components needed to make William's special 'MCT modular feed' need to be ordered and I need to be trained in making the feed, the 14 medications he will go home on and what to look out for and be concerned about when we are home. All this will take more than a couple of days but we are hoping to be home within a couple of weeks.

One issue that needs to be sorted first is the button gastrostomy in William's tummy. It is a special one with two ports that go into his stomach and just below into the bowel. He no longer needs the extra port but we were set to leave the tube in until it naturally needs changing. This time may have come sooner than planned. As his tummy is now not so distended as it was before transplant the tube doesn't seem to fit the hole in the stomach wall so well. It is fine during the day when he is upright but, in certain positions over night, the feed pours out through the gaps in the hole. His stoma is still swelling 3 time its size during the day and prolapses a bit. It all goes back to normal over night so we hope it will be fine. These are just gentle reminders of the exactly what his little body has been through. Although William is as well as possible and everyone is really pleased with him there remain just little bits and bobs to tweak.

Christmas Magic

2008-12-28T23:30:00.010Z

Ellie adding her prayer to the tree in the Chapel

A quiet moment watching the Christmas Charlie and Lola

Hope is really growing up

Enjoying opening a Postpal's Elf Box together on Christmas Eve

William's Christmas dinner - his first bolus feed leaving him free from being attached to medical equipment for the first time in his life

Special presents for two very special sisters

Tasty, not quite like you have at home but no washing up!

Christmas day in the morning, not all that unlike the scene would be at home

Ellie enjoying Christmas dinner

William having fun with his cracker

Christmas dinner is served

William's room resembling a toyshop

I am sorry the pictures are a bit jumbled up in order but I'm sure you can see what a fantastic Christmas we had. Ellie and Hope both said how strange they found it that their best Christmas ever was one spent in hospital. We were all together having fun and that means the world to us all now. This year, our minds were re-focused on the real meaning of Christmas and we all said that Christmas will never be quite the same again.

The girls and I woke at 6.30, delighted to see that Father Christmas had been. We picked up the stockings and went over to William, who was already awake and watching CBEEBIES. I was amazed that he hadn't already got stuck into his stocking, and the huge pile of extra presents Father Christmas had delivered to the children in hospital for Christmas. The children opened their stockings together and the day progressed much as Christmas day usually does. We were amazed at people's generosity in their presents to the children. I was really touched by a wonderful bunch of flowers that I received just before Christmas. Thank-you SO much. They have really brightened up my room in the parent's accomodation hotel and made it so much more homely for the girls and I over Christmas.

Christmas dinner was different, being eaten out of polysterene, but it was tasty and there was no washing up. William had his own Christmas dinner - his first bolus feed which he tolerated really well. Paul arrived in the afternoon and we opened the family presents. We then played together with toys and games before the girls and I left Paul to put William to bed and went back to the room for some festive TV and more games. Paul soon joined us as Wills was more than ready for bed and we relaxed with a drink or two and some nibbles. Although we are all looking forward to a home Christmas next year - it will be the first we have all had together at home for five years, we all agreed that this year was one of the most magical Christmasses we have ever had.

Our donor and family were in our thoughts and prayers. The girls and I discussed this, away from William but one incredible moment showed just how deep he can be for his age. I have talked to him about how his 'new tummy' was a special gift, like and early Christmas present. I didn't say any more about where it came from. Half way through the day, he toddled over and sat on my knee for a cuddle and said "What was the best Christmas present I got that Father Christmas didn't bring?" "I don't know", I answered, expecting him to be fishing for his Thomas and the Great Discovery play set with the new 'Stanley' engine that he was hoping we had got him (which we had but he hadn't been given it yet). His reply was very different

"It was my new tummy!" It wasn't just his best present - it was the best present for all of us.

Merry Christmas

2008-12-24T20:51:00.002Z

So happy with Hope and Ellie joining in his speech and language games

Outside the hospital for the first time - the huge Christmas tree was the first thing that caught his eye

This is the happiest photo of all - it wouldn't be possible without our fantastic donor family. They are in our thoughts and prayers tonight

The tree on which are lights dedicated to my three wonderful children and the donor who has enabled us to look forward to 2009 with hope in our hearts

MERRY CHRISTMAS

Life on the other side of the door

2008-12-23T22:30:00.003Z

'Hello World!'

Sorry for the lack of blog for the last couple of days. Mum and Dad's Ruby Wedding was lovely. I have some lovely photos and will blog more on that when I have sorted them out. We are now in school holidays so I have no slots in the day where I can escape for a while. This means, all the last minute running around getting ready for Christmas have to be done while William is asleep. I spent all yesterday evening wrapping and have just got back from Tesco after realising that I have nothing to offer Hope and Ellie to eat on Christmas Day evening. I am now ready and have a moment to share all our exciting news.

The biggest news is that William is now allowed out of his room, as long as he is away from people. He is no longer on any IV medications or fluid and is only attached to his feeding pump through the day with an extra feeding pump replacing the water lost through his stoma during the day attached over night. Over the next week, he will be weaned off continuous feed and onto 'bolus feeds' where a larger volume is given over a short period of time in the day and continous feed over night. When we reach three of four large bolus feeds we will reach the first day of his life when he is not attached to a plastic tube that restricts his freedom to fully explore his world. His 24 hour oxygen tube merges seamlessly into his TPN that was attached to him between 20 and 24 hours a day. Within a week, William should be able to enjoy his days able to play and move about without the restrictions of a 3 foot line attached to a heavy bag and without being continually tangled up. The impact this will have on him will be beyond measure.

His psychological well being has been lifted enormously already, just by being able to move around his room attached only to the feed and by being allowed out to explore the Chapel. He is back to his old chatty self. Now he is no longer on lots of IV drugs he is able to spend long periods of time without the need for nurses to come in and fiddle with lines etc. He was getting really cross with them. I was really worried about his mood and behaviour at the weekend but can already see him getting his confidence and personality back.

He is working really well with the speech and language therapists and has regained his interest in smelling and playing with food. He will now put spoons in his mouth that 'taste of food' e.g. have been placed in a bag of skips or had some chocolate rubbed on (but no larger smears). We have been playing a fantastic game where you have to do different things with your mouth and tongue. This has been teaching him some of the movements needed in eating and helping him gain the confidence to try them out. He still struggles with the saliva and getting him to take the gel he is using to protect his mouth from thrush is a huge trauma but he is learning manage these and they no longer dominate his day.

Hope and Ellie will arrive in the morning. I am so looking forward to us all being together. In many ways, this will be one of the most special Christmasses we have ever had. I could get all reflective on this now but that is best left for another day.