Hospital address:

William M
c/o Ward 8
Birmingham Children's Hospital
Steelhouse Lane
Birmingham
West Midlands
B4 6NH

Usual address and post for Hope and Ellie:

C/O 75 Warwick Road
Thornton Heath
Croydon
Surrey
CR7 7NN
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

William M's Parents/Guardians

Sarah and Paul

William M's Siblings

Hope 21/6/96 likes to play violin and sings in the church choir. She likes books, especially historical stories, using her laptop for social networking, games and videos, reading teen mags, collecting and using novelty pens, pencils and stationary, writing stories and diaries, cooking, knitting, hair, make-up, fashion, family days out, muscials - especially 'Wicked', likes Twilight, anything vampire, and hanging out with her friends. Ellie 29/7/99 likes playing violin and ukulele and sings in the church choir, enjoys swimming, art and craft, knitting, sewing, girlie magazines and books, writing diaries and stories, clothes, hair and accesories, cooking, all types of games, watching DVDs, singing, musicals - especially High School Musical, 'Joseph' and Lee Mead, family days out and playing outside with her friends. Also likes fashion design.

William M's Interests

Playing with his Thomas the Tank Engine engines, reading picture books and sharing stories, craft activities and making things, painting, stickers, puzzles, board games, play dough, cooking - pretend and real, icing and decorating cakes and biscuits, playing with and watching novelty lights and torches, lego, dressing up, singing and listening to CDs and playing musical instruments. He loves school and Sunday School. Likes Horrid Henry, Ben 10 and superheroes.

William M's Favourite Colour

Blue and Red

Is William M able to read?

Yes

Is William M able to use hands?

Yes

Is William M visually/hearing impaired?

No

Does William M suffer from any developmental delay?

No

Story written 2008

William was born prematurely and went home with chronic lung disease, requiring oxygen 24 hours a day. His condition worsened rather than showing signs of improvement and he was diagnosed with 'presumed cystic fibrosis' (CF). He underwent vigorous treatment for this, including frequent hospital stays for IV antibiotics and an operation to insert a port-a-cath. His health was deteriorating more rapidly than expected for a baby with CF.

He had his first birthday in hospital and was back just a few weeks later. During this admission he had several tests. These revealed that he had very severe reflux and problems swallowing so a tube was inserted through his nose, through his stomach and straight into his intestines. We waited in hospital for an emergency Nissen Fundoplication, a procedure to prevent stomach contents from escaping up into the gullet and lungs, and a gastrostomy so William could be fed straight into his stomach until he was old enough to learn to co-ordinate his swallow. William spent time in PICU following the operation and was then transferred to the high dependency unit before going back onto the ward. We were expecting to be home within a few weeks of the surgery but things did not progress well. It became clear that William's main problems were to do with his stomach and intestines rather than his lungs. He was in intestinal failure. Nothing was moving along or being absorbed so it was flowing back into his stomach and refluxing into his lungs, causing damage and frequent infections.

After three months in The Royal Brompton Hospital, William was transferred down the road to Chelsea and Westminster Hospital where they have a specialist gastroenterology team. They diagnosed that he has intestinal failure and is unable to tolerate any feed or drink. Instead, he is fed by an intravenous feed called TPN (total parenteral nutrition) given direct into his blood stream, through a Hickman Line in his chest. He is on his drip 20 hours a day. William continues to have frequent hospital stays due to very sudden and life threatening infections in his line. He can be playing happily and critically ill with septicemia within five minutes as the bugs in his intestines leak into his blood stream and infect his line. To help with this, he had further surgery this year to create an illeostomy so the fluid that accumulates in his intestines can drain out through his stomach into a bag. However, he has continued to have frequent and dangerous infections and is now showing early signs of liver disease. His future is very uncertain and his condition is considered to be life limiting with immediate threat to life because of the infections. We are currently waiting to go to Birmingham Children’s Hospital so William can be assessed for a small bowel transplant.

William needs a lot of care at home. We have appointments most weeks and William can be admitted to hospital in a life threatening condition very suddenly. Hospital stays often stretch from days to months. All this puts a huge amount of pressure on the family, especially for Hope and Ellie.

William also has cerebral palsy, affecting his legs, and uses a wheelchair when out and about. He is about to get a powered chair to help him gain independence as he grows older.

Update 23rd June 2010

Wills is going on TPN on Friday and we'll be here at least 6 weeks. I think the hospital address could go up as the main one on his page for a while sadly. Wills is very upset and frustrated so would love some post, especially making sets and Thomas things.

Update 18th June 2010

William is feeling very poorly and down now. We are going to be in Birmingham Hospital for a while so please can post come here. He is doing a World Cup project and collecting the Panini stickers (in pretty much every shop at the moment) so they would be great and cheap little things to send. He also loves sticking and making things and Thomas of course. We're just hoping he won't have to go back on TPN!

William M
c/o Ward 8
Birmingham Children's Hospital
Steelhouse Lane
Birmingham
West Midlands
B4 6NH

Update 11th June 2010

William has been in hospital since Wednesday and will be in at least all of next week. He caught Rotavirus - a common tummy bug for most, but dangerous for bowel transplant children. He's currently being treated to try and prevent rejection as this often triggers it and is off feed. We won't be introducing feed again until next week and may have to go back to the beginning and do it slowly. Wills is very fed up!

Update 26th May 2010

I'm sorry for the lack of updates lately. Things have been hectic with juggling tight deadlines at work and a lot of hospital visits.

Wills is still doing very well after his transplant but we have had a few small setbacks. William's illeostomy had been prolapsed for a while but, in April, the team decided it needed to be re-done. This meant having his bowel re-sectioned and a new stoma formed. Ten centimetres were removed from his bowel, which isn't much, but it seems to have made a difference to his bowel function. It's all still fine but William is having higher output and we're back to measuring and replacing his losses. He's very well in himself so we're not too worried but will have to keep an eye out for signs of infection or rejection. We're hoping his bowel will settle back down again. It can take time after bowel surgery and Wills always seems to do OK but take his time after these things.

The biggest news is that we're nearly there with getting a diagnosis for William's Asperger Syndrome. The sad thing is that we have found that he has a big problem with the sensory side of autism and that will have felt more intense pain from all the operations and procedures he's been through. We've often noticed he needs more pain relief than they expect and William's team at Birmingham are fantastic at keeping him well monitored and comfortable. Now we know, we can make sure this continues. We're slowly learning how to cope with his 'meltdowns' and make sure his autism has the least impact on his life possible. It has its moments though!

William's serial casting and operations for his feet deformities were successful which is fantastic.

We are working harder with his physiotherapy and OT at the moment to help him make the best of his abilities.

Overall, we're having a few challenges but he's happy, the girls are happy, and that makes Mummy happy.

William loved his space sticker book - space is one of his fascinations. Thanks so much. He really appreciates everything people send him and loves getting post. All the children do.

Update 27th February 2010

Wills is having an operation on both feet on Wednesday and is really upset about it. He will probably only be in hospital for a day but he is terrified about 'special sleeps' and is really unsettled because of it. His Asperger's Syndrome makes it really hard for him to understand and come to terms with the idea of medical procedures coming up.

He is back in plaster casts on both legs now and will be in casts at least 6 weeks after the surgery. It is likely he won't be allowed to walk on them initially.

We're going to Birmingham on March 18th and may be told then that he'll need a big operation to re do his stoma. It is prolapsed and it's a matter of time before this has to be done but he's very anaemic at the moment and this may signify that the bleeding caused by the prolapse is causing problems. I'm really hoping we can get away without the stoma operation for a while with him having to have the feet operation next week.

Other than some coughs, colds and flu over winter, he's had a good run over recent months, but could do with some smiles over the next few weeks.

Update 3rd February 2010

Wills continues to do very well after his transplant. We have had a difficult winter in terms of how often he's been unwell with colds and a possible bout of flu but, thankfully, this has only led to him being miserable and grotty. We have been able to manage it all at home.

We still have the uncertainty as to whether or not he'll need his illeostomy re-forming because it is prolapsed and covered in sores. Each time we go to clinic in Birmingham the decision is put back to next time as it will be a major op and could unsettle what is currently going so well. It will have to be done eventually. Wills is working hard with his physio. We are still exploring the diagnosis of asperger syndrome - something that makes it difficult for him to cope with the change in routine being unwell brings and can cause a lot of upset. The girls find it hard too. Wills is fantastic though and the little 'quirks' this syndrome gives him only really help to make him the little boy he is.

It's been a hard start to the year because we lost a close friend who died after transplant. This has unsettled William and made him realise that a transplant comes with complications that are not always conquered. A lot of children we know who had small bowel transplants several years ago are struggling now, some needing another transplant. This reminds us to enjoy every precious day we have with William.

We are looking forward to spring now and hoping we, and other Pals, have a settled and stable time ahead.

Thanks for all the smiles the children have had these last couple of months. I think our December update was lost in transit and I don't want to repeat everything but will say again thanks so much to the children's elves, especially the lovely ones who put in a few pampering bits for Mummy, much appreciated. The children had some very kind and thoughtful gifts and we are so grateful for everything.

Thanks so much Maria and Michael for the smile box. It came when we were all very sad after losing a close friend and cheered the children up no end (and so me too). Thanks to Milly and Alice P for the fab face paint kit. The children have been very creative, especially transforming William into a super hero, and we'll send you some pictures with some bits we are sorting for you. 

Update 30th November 2009

We celebrated William's first transplant anniversary on November 20th. Our thoughts were with our donor and her family while we thought how well Wills has done this year and how far he has come. He is doing really well. The hardest thing for me to cope with this month is that, as his health is less of a worry (at the moment at least as I always have to say that as things can change very quickly for transplant patients) attention is turning to his other problems. One of William's hugest achievements this month is that he is drinking fortified strawberry milkshakes (scandishakes) in the day time and is not attached to any tubes in the day for the first time ever in his life.

I was hoping William would be able to start main stream school now but had a difficult parents evening when it became clear to me that his physical disabilities, caused by his cerebral palsy, still need a lot of input and that it is becoming clear that he has high functioning Asperger's Syndrome. The Asperger's explains how distressed he can become at times and means that we will have to work harder to prepare him for hospital admissions and procedures. On balance, William is best remaining in the school he is in for now and we are lucky we have such a fantastic school for him.

The girls have found it difficult to accept his wider problems as they feel it is all so unfair. They could do with some smiles. I always knew he had a syndrome and this is all part of it. We are just so happy and thankful that we have him, he is alive and he is incredibly bright, intelligent, sociable and charming. Asperger's Syndrome is very much misunderstood and doesn't deserve the somewhat 'taboo' reputation it has.

We are looking forward to our first Christmas at home together in four years and hoping William stays well. I hope all Post Pals children, families, pals, staff and supporters stay as well as they possibly can over Christmas and everyone has a very merry one.

Thanks this month to Post Pals for the lovely first transplant birthday card. As always, we love hearing what people are up to and it is always lovely to hear the news from Maria and Michael.

Update 4th November 2009

I am sorry we haven't updated for a while. I thought we had last month. I have been crazy busy with a campaign to raise awareness of organ donation to save the life of a 20 year old girl who will die without a transplant. It snowballed and I haven't really had much time to think about anything else. As always though, we really do appreciate the cards, letters and gifts that so many wonderfully kind people send the children.

William is doing really well at the moment. He has just had his legs in casts for 5 weeks to help soften up a deformity in his feet. He was a little star throughout the process and can now walk with his heels down. We are waiting to see what happens over the coming weeks and whether or not he will need a little operation to release the tendons in his feet.

It is hard to believe that it is nearly a year since his transplant. He has been really well but we are not yet out of the woods. They don't relax until 2 years after a bowel transplant so we are half way there. He may need further surgery on his stoma in the coming months. He'll have a surgical review at his annual review in a few weeks time. This will be the first winter he has been home after his transplant. As he is very immunosupressed, I hope he doesn't struggle with the bugs that love this time of the year. 

Family life is the most settled it has ever been. I just hope it lasts for a nice long time. The best news is that William is beginning to relax and enjoy food for the first time in his life. For now, it is just strawberry fromage frais, milk shake and lollipops, but it is a huge start as he wouldn't put anything in his mouth until recently and, as he was nil by mouth, never learned the skills as a baby.

Thanks for the lovely Halloween cards this month. We also always love hearing what people are up to and William loves hearing all about Michael. Thanks so much for the Halloween things and for William's lovely red scarf. It looks great and will certainly keep him warm.

Update 3rd July 2009

William is continuing to do really well following his transplant. His stoma is a bit of a mess and he will need further surgery over the coming months. He is very traumatised by 'special sleeps' so we are waiting until he has had time to work on his fears with a psychologist. Now William's health has settled, working to reduce his minor disabilities from his cerebral palsy has become a priority. We are waiting for him to see an orthopeadic doctor to start the process of serial castings and tendon release to help his walking. This will be painful and unpleasant but worth it in the long run. William has complex issues so there will always be things on the horizon for him but he is so happy to be well after his transplant and it enjoying life to the full. It is transplant awareness week on July 5th. Please do think about joining the donor register and tell your family and friends about children like William whose lives are saved by that special gift.

Thank you for our post and for Hope's birthday cards and the cards to wish William well as he re-starts school. Special thanks to Maria and Micheal who write to us so often and for Hope's lovely birthday present. It means a lot and we love hearing about what you are up to.

Update 19th May 2009

It has been another great month for William. There are a few blips though. The main concern is William's stoma that is pretty badly prolapsed. The better he feels, the more knocked around it is getting and there are now a lot of sores on it that can bleed. It may be that Wills will need another operation to re-do the stoma. We are hoping not but expecting that this will be on the cards in the coming weeks and months.

William is on fantastic form and is better than we had ever dreamed he would be after his transplant. He does have the odd day when we being to wonder what is going on and these serve to remind us that a transplant is not a cure but a new condition really. It is still fantastic because I am not sure William would still be here if it were not for the wonderful gift his donor and the family gave to us. The anti-rejection drugs are causing William to have diabetes and that is generally stable on two insulin injections a day but can prove to be a bit tricky from time to time and he may need to have more injections with feeds.

Wills has begun to eat which is fantastic!! He eats fromage frais but only when he is being gently bribed at the moment.

All in all, things are great and it is so nice to be a stable family at the moment. We know there will be a few more ups and downs yet though, but we were told to expect them over the first couple of years after transplant.

Thanks for all the lovely Easter cards. They were very much appreciated. Thanks for the notelets for Hope and Ellie, the magic eggs and all the lovely Easter gifts and craft sets the children received. They were very much appreciated as we enjoyed our first celebration time together after William's transplant.

Update 8th April 2009

I think this is the first time I have ever written this in an update - William has been well all month! He has had a fantastic month and is doing really well at the moment following his transplant. The only slight concern is that he had to increase his insulin injections for diabetes to twice daily and may need to begin having additional injections with feeds. He is really brave for all his injections and blood tests though. He is putting on weight so well that we had to decrease his feeds. He really is doing so so well. We are now working hard to increase organ donor awareness in the hope that others may get the transplants they so desperately need as soon as possible.

It is still early days for William and I have to try not to get too carried away with how things are going now as we have been told to expect ups and downs in the first two years. 

William is still in isolation at home and so is really enjoying the craft packs and things to do. The children are loving their Easter post. We were hoping to go away to our hospice for Easter but had to cancel as someone there has chickenpox - something very dangerous for William. With three children having to stay away from civilisation for two weeks, we are really grateful for the Easter make sets, colouring sheets and for the notelets Hope and Ellie have received. You can expect some rather classy thank-you letters coming your way.

William will remain in isolation until the end of May and will continue to have weekly blood tests. He will have a short admission in Birmingham at the end of May and, if there is no rejection, he will then be able to take his new tummy into the big wide world again.

Update 23rd February 2009

William is now home again after a nasty time with pneumonia and subsequent complications with his new bowel. All is going very well at the moment. We have a lot of hospital appointments and blood tests but, in between, William is enjoying a life free from intravenous drugs and being attached to a drip nearly all day. The next two years will have their worries and emergencies but we finally have a chance for some stability and normality in between.

William is drinking water but not yet eating. He has to learn all the skills and gain confidence so this will take a long time and involve a lot of hard work and input from speech and language therapists and psychologists.

Thank-you so so much to all those who sent cards, letters and gifts to William. Hope, Ellie and myself during the last three months since his transplant. We have been amazed by people's generosity. I can't begin to tell you what a huge difference it made for us all. It helped us to feel so very supported and cared about. The post has been the highlight of William's day. We are writing to those of you whose addresses we have but have a lot to do in catching up with work and school work so it will take us some time. All William's cards and letters are being put into a special scrap book that will be part of his transplant memory box.

Update 2nd February 2009

We had a great start to the year in that William had had his transplant and was doing well and we had a future to look forward to. We got home at the end of the first week of the month but things went downhill almost straight away. William was unwell at home and was back in hospital within 2 days with signs of a nasty infection. This turned out to be pneumonia and he had a very tricky time with it. He was on a lot of oxygen and there was talk of intensive care but, William being William, he fought hard and got better without any need for that. He picked up fast but, unfortunately, his new bowel struggled with him being so poorly and was beginning to look like it was rejecting. We were transferred back to Birmingham Children's hospital for tests. Thankfully, he does not have rejection but his bowel is not being as effective as it was before he became so ill. We are still in Birmingham where the team are trying to work out what has happened and what to do about it.

Wills is well in himself though and pretty bored and fed up. He had lots of post after his transplant and over Christmas and it cheered him up no end. He would really appreciate some letters and cards now to give him a bit of a boost. Hope and Ellie are thrilled that people have been thinking of them and sending them letters, cards and gifts. Thanks especially to Vikki for the lovely books and bracelets. I spent some time with the girls last week and they were shown to me within the first hour I was there. We are all hoping that we will, finally, be home together soon as we have been in hospital away from the girls since the end of September.

Update 14th January 2009

William did really well and got home following his transplant. Unfortunately, our time at home was short-lived. He didn't seem right from the very next day and spiked a temperature within two days. We are now back in hospital as Wills has pneumonia in both lungs. He is pretty poorly and requiring IV antibiotics, fluid drips and oxygen. We are hoping he will turn a corner quickly and are also concerned as infections can cause rejection, especially so soon after a transplant. Poor William has been through so much and deserves some good luck soon. Hope and Ellie are very upset as they were so looking forward to us all being together at home at last. We don't know how long it will take to get to that day at the moment.

Update 7th January 2009

December has been an eventful month for William. He received the special gift of a new tummy (small bowel transplant) on November 20th. He did very well initially and was quickly out of intensive care. However, he then had recurrent problems with blockages in his new bowel and had two further operations. His bowel was slow to get going and we spent many anxious days. Things took a big turn for the better towards Christmas and his bowel began working well. He was slowly weaned off the intravenous feed that has been keeping him alive for the last three years as he became able to tolerate a special feed delivered into his tummy through a tube. He is allowed to eat but has not learned the skills he needs to do so. That will take time. William has continued to do well and we are hoping to go home in the next few days. He has some problems with his stoma (where the bowel comes through the skin) and there is a chance he will need further surgery in the near future, but we are hoping things will sort themselves out naturally.

Due to the high amount of steroids and anti-rejection medications needed immediately following a small bowel transplant, William will not be allowed to mix socially, go to school, or go to shops or busy streets for another four months. He will have frequent hospital visits, blood tests, and short hospital stays over the next two years and may need readmission to hospital if he catches any infections or viruses or experiences any rejection. The fist two years post transplant are the most vulnerable. For now though, he is better than he has ever been in his life and, apart from three one hour bolus feeds a day and an overnight feed, he is finally free of lines to really get exploring his world. 

Thanks for all the lovely get well and Christmas cards William and the girls received. William looked forward to the post every day and the girls really appreciated being thought about.

Thank you so much to all those who were so kind and generous in sending presents to William, Hope and Ellie during his stay in hospital for his transplant and for Christmas. William had a really tough time during his first weeks following his transplant and his cards and parcels really cheered him up. Post time was a very welcome distraction. I don't like to mention people by name as I would feel terrible if I missed anyone, but thank you all so much for the books, colouring books, activity pads, stickers, Spencer engine, balloon, games and other bits and pieces.

I do want to say a few special thank yous. Thanks for William's fantastic Thomas night light and torch. It has never left his side and was the only thing he was interested in when he was really unwell. He even holds it in his sleep. Thanks for the Thomas DVDs sent for Christmas. I let him have them early as it was just what he needed when he was unwell. Miraculously, they were ones he hadn't got and some new Thomas episodes were a welcome escape from the constant medical attention he needed. Thanks to Becky for making him a fantastic Thomas pillow case. It has only been off for washing.  

I must also thank those who sent Mum a little something to cheer her up. Thank you for the parcel of washing things and chocolate. It was a lovely surprise during those early worrying days. Thank you for the beautiful candle for Christmas. I can't wait to light it when I get home. Thank you so much Munira for the wonderful flowers you sent at Christmas. The turned my bare hotel room into a home for myself, Hope and Ellie over the Christmas period and filled it with a lovely scent.  

Thanks to our wonderful Elves. The children were absolutely thrilled with their elf boxes. William loved all his Thomas things and I had very excited phone calls from the girls to tell me about their elf gifts. The children shared the other elf and opened the box together on Christmas Eve. That was a lovely time for them all to be doing it together and they were all chuffed to bits with the gifts.  

We have been totally astounded by the generosity of strangers during this time in our lives. William will be isolated at home for the next four months so all those books, colouring books, sticker, craft kits etc will be very much valued for the long weeks to come.

Update 29th November 2008

What an exciting end to November we had! William had his call for transplant on 19th. It all happened in a very dramatic way as he was on the operating table about to have another emergency procedure. He had his small bowel transplant on 20th November. Since then, we have had our ups and downs. Things seemed to be going very well at first but, over the last few days, William's new bowel has stopped working. We are not yet sure if he will need further surgery or if we will just have to be patient and hope it gets going again. These are early and anxious days. I am updating our blog at www.sarahmilne.blogspot.com each day so you can follow William's progress more closely there.

Thanks for all the post. It is certainly helping keep him going at the moment. They have a very organised post system here and William looks forward to post time with the hope he will have something. He loves reading his letters and cards and enjoys all his gifts. He really appreciates everything and, with the prospect of several months in isolation, Post Pals is really coming into it's own for him right now. Hope and Ellie appreciate all their cards, letters and gifts too. It is an anxious time for all of us.

Update 21st November 2008 (10pm)

Thanks for all the lovely comments and text messages. It is wonderful to know how much support we have. William is doing really well and is out of intensive care!! He is such a little fighter. He is still in a lot of pain but is nodding and shaking his head and saying the odd word here and there. He is sleeping most of the time but we have had a Thomas story and he has snoozed through a couple of videos. I will tell the whole story but I know people are anxious for the latest news for now. Wills is taking his nystatin medicine orally and loving how it tastes!! It is the first thing he has taken in his mouth for 3 years!!

Update 21st November 2008

All has gone well with William's transplant and he is out of intensive care! 

Post can now be sent direct to the hospital (address above) as he will be here for 3 months.

Update 19th November 2008

William got his ‘call’ at midnight and was transferred up to Birmingham Children’s hospital. He went into theatre at 8am and is getting his transplant!!

Update 1st November 2008

William has spent the whole of October in hospital. He has been battling with recurrent infections in his Hickman Line. Just as we were hoping to be home soon he started another infection so we will be in hospital for next few weeks at least. It is a very difficult time for us all as Hope and Ellie are away with their Grandparents. We are all missing each other very much.

William's post has really cheered him up. Thanks to everyone who has sent us lovely cards. They are brightening up the wall in William's room. He loves reading letters and hearing all about the people who write to him. Thanks for all the lovely presents too. It is great to have some new bits and pieces to entertain him with as he gets very fed up. Thanks Dylan and Seren for the lovely Thomas game. We have had loads of fun with that. Thanks Post Pals for the lovely books and parcels. A wind up nose made him laugh for ages. Thanks to everyone else for the colouring books and stickers. A jumping smiley face makes William laugh and laugh. I have been forwarding Hope and Ellie's letters, cards and gifts and I know they really appreciate them, especially during challenging times like now. I'm sorry for not thanking everyone by name. I am so scared I will miss someone but we do know who you are and will write thank-you letters to those whose addresses we have. Our mail helps keep us going.

I hope we will be able to report that William has had his transplant soon.

Update 30th September 2008

Further update - we are back in hospital with another line infection. We will be in at least 2 weeks.

Hope is missing her French exchange and is having an especially hard time.

Update 29th September 2008

William came home from hospital just in time for his first day school. He has made a really good start and progressed to full time days within the first week. He is learning to read quickly and has read through most of the first stage of the reading scheme already.

William's energy levels are noticeably down on how they were and we can see his health is deteriorating. However, it has been wonderful to be home together. We have made the best of it. Unfortunately, after only 3 weeks at home, William is a bit unwell at the moment and we are waiting to see if he has yet another infection in his Hickman line. We expect to be back in hospital tomorrow and my parents are on standby to collect the girls. This is especially devastating for Hope as she was due to have her partner in her school French exchange staying with us next week. It looks like she will now have to drop out of the programme. All her friends are doing it and she is bitterly disappointed. It is very hard for siblings. Their lives are forever being thrown into turmoil and they miss out on such a lot. We all hope William receives his transplant as soon as possible.

Thank you to Julie for the postcard, letter and badge from Cornwall. Thanks to Maddie from Crafting Friends for the beautiful card. Thank you Post Pals and Moonpig for a lovely hello card. Thanks everyone for the lovely letters, we do love reading them. We’d also like to thank Viks and Post Pals for the fantastic bouncy castle. William has had a lot of fun on it. Thanks to those who sent William gifts this month. Thank you Maria and Michael, he loves his Thomas the Tank Engine story CD, it is on most nights as he goes to sleep. The girls loved their goodies too. Thank you everyone for the colouring books, stencil set and stickers. William loves them all. Thanks also for the chocolate buttons for Hope and Ellie. They were very much appreciated. Sorry for not mentioning everyone by name, I am so scared I'll miss someone who will then feel hurt! Thanks to you all though. William gets so excited when he gets letters, cards and parcels and is cheered up loads by them when he is having a bad day and so do Hope and Ellie.

Update 11th September 2008

William finally came home from hospital at the end of last week. It is great to be at home together and we hope we will be home for a few weeks at least. We are not so sure though as William is not all that great. He is in a lot of pain and discomfort and his poor little tummy is huge and gassy. He has very little energy these days and can only manage to play in short bursts with lots of frustration and cuddles in between. It is hard to watch as he has gone down hill a lot in the last year with all the infections he has had. We will stay home unless he becomes dangerously ill with another infection. In the meantime, we are waiting to get that call to say a new bowel or 'new tummy' as William calls it, has been found for him. Everyday I hope and pray it will be today.

The girls are also home and we are all enjoying being together. We still have our Post Pal Thorpe Park trip to look forward to and the girls and I will be going for some much needed girlie time. William starts school next week. He is going to a special needs school for children with physical disabilities and will have one-to-one support throughout the day. It has been a huge job to get all the arrangements in place and it has all come together just in time. He is really looking forward to it. The only difficult thing is that they don't want him to finish his TPN dose at school as flushing the line is an infection risk. This means we have had to adjust his TPN time to go up at 8.30pm and come down at 4.30pm. This means poor Wills is attached to his line right up until the end of the afternoon and only has a couple of hours free before bed. He is not very happy about this and it is taking a lot of energy and imagination to keep a tired, sore and frustrated small child tied to a line happy and busy all day.

Update 31st August 2008

William spent the whole of August in hospital with recurrent infections in his Hickman line. This is because his intestines are now leaking all the bugs into his blood and they are breeding in the line. This is a very dangerous situation and, because of this, William was assessed for his transplant at the start of this month and we received the recommendation that he be accepted for the waiting list for a small bowel transplant. We are now waiting for a suitable organ to be donated. We are starting September still in hospital where William is now recovering from his infections and has had a new Hickman line. We are hoping to be home soon and that we will be able to stay at home long enough for William to start his first year at school. He is really looking forward to going.

Thanks to everyone who sent cards and postcards. William really loved opening his post and was very much cheered up by it all. The cards and postcards brightened up William’s room in hospital. William loved all his cards, especially ones with Thomas. He loved the colouring in too. Hope and Ellie also loved their cards. Thank you all so much. We will try and write back to those who sent their address. Thanks also for all the letters. Special mention must go to ‘Percy the dog’. William laughed and laughed at your letter and still asks for it to be read and re-read over and over again. Thanks so much for the little clock work dinosaur. It cheered William up on a very down day. Thanks also for the stickers, bubbles and magic drawing slate. Every little gift William received was immediately put to great use and played with over and over again.

This is our first hospital admission since being a pal and all the posty made such a huge difference to William.

Update 24th July 2008

William currently has gall stones, caused by TPN related liver disease and failure of his intestines to clear the bile. He is a bit jaundiced, sore and uncomfortable from this, but still smiling as ever. He will need another operation to remove his gall bladder but his team wants to assess him for transplant first.

We are going to Birmingham Children’s Hospital for 2 weeks from the beginning of August for William to be assessed for a small bowel transplant. This will be an intense fortnight for us all with lots of invasive tests for Wills and difficult counselling sessions for Mum and Dad.