We're back!!!

Hi everyone! We are finally back from hospital and back online! It has been a hard couple of months. Once again, the girls have been away from home at Grandma and Grandads. It was great to have them back again on Friday. It has been a great stress on us all. Although we are home now, which is fantastic, we know that this year will bring further hospital stays. William's health has deteriorated over the winter. Of course, this may just be due a bad winter and he may bounce back. However, it has been decided that now is the time to start thinking about whether or not he may benefit from an intestinal transplant. He has now been referred to Birmingham Children's Hospital for assessment and for advice on the best surgical intervention, such as an illeostomy, to help make him more comfortable in the mean time. William is getting a lot of infections due to the stagment fluid that sits in his intestines. One such infection is pseudomonas aueriginosa, a nasty bug that used to colonise his lungs. Unfortunately, this bug has returned in his intestines, around his gastrostomy and, once again, in his lungs. He is on IV antibiotics at home at the moment and will start antibiotic (colomycin) nebulisers later in the week. We are also having to restart his chest physio. He is back on a lot of the treatment he used to have when his diagnosis was "probably cystic fibrosis" as well as the TPN and IV medications for his intestinal failure. We have calculated that all this will take about 3 hours a day.

With all the extra care, breaks like those we get at the hospice will be even more valued. We were there this weekend (where William enjoyed the swing). The main reason for our stay was to attend the reception for the marathon runners held at the nearby Losely House. It was a fantastic day. The girls had their face painted and enjoyed playing and painting with William. We had a fantastic three course meal and wine (Hope was most cross as she was given sausage, chips and beans with the other children) and many official photos were taken for local newspapers and for team shots etc. It was a really exciting day and the marathon seems so much more real now. I was relieved to share training stories with other first time runners and learn that I am ahead of most in my training mileage. I was asked to share a little about why I am running for CHASE with the other runners. With all that has been going on so far this year, I suddenly felt very emotional looking out to see all those people (54 runners plus familes and CHASE staff) and felt I was talking in a very squeaky voice with a huge lump in my throat. As many people know, I can talk and talk but wasn't able to say an awful lot. Still, one lady did tell me afterwards how moved she was and how she was going to work harder with her fundraising. All the runners will know why children are referred to CHASE and I think seeing William attached to his TPN in his chair during the morning and then running around in his unique wobbly way would have spoken much loader than any of the words I had to say. The CHASE marathon team has been going for 10 years now and are just £7000 away from having raised 1 million pounds. The 2007 team will reach that milestone which is absolutely amazing. I know many people who read this blog have already sponsored me - thank-you so much! If you haven't done so, please do help us reach the magic million pound mark by clicking on the link to the right of this page.

Further delays...

Well, we should have been going home today but, unfortunately, William's new TPN prescription has posed problems in gaining stability in the bag. Each bag of TPN contains all the nutrition, vitamins, minerals and fluid the recipient needs in the day and is a unique presscription to the individual, based on blood test results. With such a complicated mix of chemicals, there can be problems in stability and each bag needs to be stable for 2 weeks to enable storage in the fridge. So, William remains on fluids alongside his TPN, although we are expecting the new prescription to arrive today. They then want to see if his electrolytes balance OK on the new stuff so it will be next week before we are home. We are due in overnight for an MRI scan and to train with new home TPN pumps on Thursday anyway so everyone has agreed it is silly to go home for a couple of days and come back. Another week in hospital with the girls away in Stoke is looming...

It has been a while..

It has been a while since I last posted and Hope and Ellie, still at Grandma and Grandad's, are begging me for an update. We are still in hospital but now have William's electrolytes balanced. He needs some adjustments to his TPN so we this week is a tedious week where he is having additional potassium and sodium in a drip alongside his TPN while new bags are being made up. We should get these on Thursday so can finally go home. It has been a frustrating start to the year, with only 2 weeks at home! 2007 looks set to continue in this fashion as William's consultant and surgeon have agreed that he needs an illeostomy and perhaps other surgery to "decompress his gut", i.e. to drain the fluid and gas away. This is not going to happen immediately as we first need to establish if William is likely to benefit from an intestinal and, perhaps, stomach and liver transplant. So, this week we have finally been referred to the transplant team in Birmingham. William is not yet sick enough for a full transplant assessment as this happens when the liver begins to struggle much more than William's is at the moment. What will first happen is that Paul and I will meet the team and discuss if this route will be right for him at a future date. The outcome of that discussion will determine the type of surgery that will be done later in the year.

I can't wait to get home on Thursday and have some time to normalise! I miss the girls so much but they have been fantastic and very brave. Love you loads xxx

Back to hospital

Just as we were all settling back at home and Mum and Dad are back at their home we were called to say William's potassium levels are low and he needs some different fluids and a blood transfusion as his iron levels and red cell count are also low. So, I am just packing and back to Chelsea and Westminster we go. It is really awful, poor Hope is distraught! These are the worse times in all of this.

We are home!!!

Hooray!! We are finally home. It has been a very long and traumatic month for William. He had his hickman line taken out and, unfortunately, the infections had become so well established that it was 12 days before a new line could be put in with some confidence it would not be immediately infected. During this time, William received fluids via a peripheral cannula. He had 2 long lines (longer cannulas that are supposed to last more long term) and 8 cannulas, each one taking 2 or 3 attempts to get in. The poor thing became absolutely terrified that any stranger who approached him was about to grab his arm or leg and stab him. Eventally, anyone who came anywhere near him was greeted with and anxious "all done...all done". It has been most upsetting to witness. Wills also became very ill again last week and no one was sure why he was so poorly and where the infection could be centered. He very nearly ended up in the High dependency unit. Eventually, it was felt that a chest infection was the main problem and he was put on a combination of IV antibiotics for pseudomonas in the lungs, escaped from the intestines! This worked well and the new hickman line was finally inserted on Monday.

We are now waiting for the next phase. Wills is losing about half a litre of nasty liquid from his stomach, via his gastrostomy. This is due to liquid failing to drain from the colon and backing up into his stomach. This is making him feel very nauseous and the gas from the festering liquid is causing a lot of pain. An x-ray showed that there is a lot of liquid and gas building up, so much so that his small intestines can become as big as the large ones and press on other organs, such as the liver. This build up is what is causing all these infections in his line and chest as the bugs build up and get into the blood. His consultant is away this week and we are going to see him in clinic next week to discuss what to do next. It is highly likely he will have an illeostomy to enable the liquid to drain higher and for his intestines to de-compress. This is so probable that we have had the talk from the stoma nurse and have lots of literature and some sample illeostomy bags to look at and, once the decision is made, familiarise William with. I was hoping they could have got on and done it while he was in but they want him to be fully over the infection and better nourished for a few weeks first. He has missed out on so much TPN over the last month and has lost 1.5 kilos - a lot to loose when you only weighed 13kg in the first place.

Wills had a very happy day today and was delighted to be home. He beamed and beamed in the car when we travelled home yesterday evening. The girls were really pleased to see him too.

A new blogger

William's big sister, Hope, has now started a blog so you can follow her perpective on our life. He address is www.hopemilne.blogspot.com. Do go and visit her blog and say hello.

Still no new line...

I have managed to escapte into Starbucks for an hour or so while William is with out community team member from CHASE. I really need to get some work done so this is just another quick update. William's line came out on Thursday but we have still been unable to put a new one in as he is still very poorly with infection. They feel the infection is coming from his intestines and is "systematic" meaning throughout his body, rather than just simply a "line infection". The fact that the line is out and he is still poorly does support this. We are hoping to get the line in tomorrow or Friday as he has had very little nutrition over the last month and is looking rather pale and skinny. It has turned into a lot longer haul than we thought and poor Hope and Ellie are getting upset with yet another period of being apart from Mummy and Mummy is feeling exactly the same way! It is all very wearing but can't be helped. We all hope the new line is in as soon as possible and Wills can come home so we can all settle down again!

Another quick update

This is just another very quick entry as I am home very briefly for tea and to collect William's TPN. I am keepnig diaries at the moment so will post a reflection on the last few weeks when we are home and back to normal.
William had his infected line out on Thursday and has spent the weekend with no Hickman Line at all, surviving on fluids (and IV antibiotics and antifungal treatments) only through a cannula in his hand. His infections were too bad for a new line to be inserted straight away. We are hoping to get the new one in tomorrow so he can go back onto TPN. We really hope so as it has taken at least 3 attempts to get cannulas into him as his veins are so scared from all the IVs he had before his port-a-cath and Hickman Lines. Once the line is in, we will move onto thinking about how we are going to keep the infections in his guts under control. This will probably involve antibiotics but, as I said before, this could cause more problems as the drugs would just sit there. William's gastric aspirate (that drains from his gastrostomy) is really yukky and and there is more of it than ever so there is a chance we will have to discuss the possibility of an illeostomy (a piece of intestine through the skin to enable the waste stitting in his gut) to drain out. William's consultant is covering the ward this week so we'll see what he thinks. Something needs to be done though as the poor thing is looking so pale and "bilious" with all this sitting in his stomach.

Some pictures to brighten the blog

I have been accused by Paul for making this blog too boring due to the lack of photos on recent updates so here are a few pictures, from the mobile phone, of William over the last few days. As you can see, there are good days and bad days but the brighter pictures are the most recent ones!!!

Battles with the old enemy...

We are still in hospital, battling with our enemy of old - the dreaded pseudomonas! When Wills had a CF diagnosis, this bug was ever present in large numbers in his lungs, causing a lot of worry about his prognosis. When he had his Nissen Fundoplication, to prevent reflux and his gastrostomy inserted to allow us to drain his gastric aspirate, we learned that the pseudomonas in his lungs were coming from his intestines and getting into his lungs in the reflux. Now, it seems his intestines are far more colonised with pseudomonas than previously and the little blighters are crossing the gut membrane into his blood, causing line infections and septacemia. He has had 4 different species of the bug in his line during the last few weeks. His guts also seem to be colonised with fungal infections that are also getting into his line. This is all more than slightly worrying. He is going to Chelsea and Westminster hospital on Monday to see if he needs a new line and also what can be done to keep these bugs at a safe level - they are unlikely to be killed now, as one doctor put it, once you are colonised, they are yours! When gut motility is slow, these bugs just sit there breeding. Most people would be able pass any such bugs quickly through the system without giving them time to breed. The standard way of "sterilising the gut" is to put large doses of antibiotic in daily for 3 weeks, then off for 3 weeks so on... This would be OK for a child with slow gut motility. However, William has no motility to speak of so the antibiotics would sit there, causing problems in their own right. So, as well as deciding about the fate of his line, next week will see discussions about what we can do about this. William's gastric aspirate has been getting muckier and muckier and more and more in volume. His stool output has gone down, suggesting the yucky secretions are sitting around longer. It could be that this is the beginning of another step closer to Wills needing an illiostomy. So, we are off for a review and some more discussions of "what next?"

Still full of infection...

Well, we are still in hospital and, although William is much better, he is far from well. He still has bugs in his line and also has a fungal infection in there. He has started a daily 4 hour infusion to combat the fungus but it looks like he will remain in hospital this week and may have to go into Chelsea and Westminster on Monday. Paul is also in hospital this week for the next operation on his leg. I can't wait to get back to normal!

A quick update

This is just a very quick update while I am home swapping dirty for clean vests. William is still in hospital and has been pretty poorly. There was even some thought as to whether he should have been moved to a high dependency unit on Wednesday because he really was a poorly little thing. His temperature had shot up to 40 and the markers in his blood that show infammation, due to infection, were very high. Poor Wills was just lying down, hardly responding to anything at all. All the nurses that know him well, know that this is certainly not William! He is now much better, having responded to the IV antibiotics. However, the poor thing has managed to catch 4 infections, two in his line and two in his stomach, turning his gastric aspirate thick, green and very smelly!! For those reading this who know about bugs, he has pseudomonas flourescens and staphloccus epidermis in his line and pseudomonas aueriginosa and candida in his tummy. We are trying to treat all that with as few antibiotics as possible but there are some more up our sleeves if he needs them.

Another line infection

Well, we are back in hospital again with another line infection. This was another hairy one. William was playing happily with his Thomas the tank engines and, all of a sudden, was found lying on the floor all pale and drousy. The ambulance came quickly and, as he was looking so awful, ended up blue lighting him. He was going into peripheral shut down again, when all the blood is sent to the vital organs, a sign of going into shock. He is still very hot and poorly today but has some colour back in his cheeks. We were very pleased to hear him ask for his favourite Thomas episodes again!

Paul is going back in hospital next week for bone grafts and another piece of metal work to hod things in place for the next 6 weeks. He will be in plaster a further 6 weeks. This is all much more complicated than we thought and his return to Glyndebourne this season will now have to be cancelled. At least he has a teaching job in Tonbridge for now but he is very concerned that the 2 years out of opera this accident has resulted in will be very hard to make up for.

Thank goodness for Mum and Dad who are here to hold the fort for the next 2 weeks while I run (probably literally in the name of marathon training!) between hospitals!

New plumbing

I must apologise for such a long gap between posts. It has been incredibly busy here with the beginning of term and getting back into work after Christmas. I had a huge backlog of work and had to get my head down over the last week and spend every available moment writing strategy documents. I finally caught up today so here I am. Those of you owed thank-you letters and Happy New Year phone calls for Christmas presents, I am sorry, I have been thinking of you and certainly haven't forgotton. You will now get them over the next few days, I promise! William has been practising his "Happy New Ear" so will jump at the chance to offer some more greetings!

We were offline for a few days last week as we were back in Chelsea and Westminster for William's new Hickman line. He also has a nice smart new gastrostomy and combined jejenostomy. This is now attached to a small bag when Wills is in his chair or in bed to enable his stomach to drain freely as this tube does not aspirate via a syringe as effectively as the old one. This is because it is much smaller which is so much better for William. He is becoming very aware of his "gatotomy" and "tipman line" and, of course, ted has new ones too! The procedure went well but took a while as the inside flange from the old gastrostomy could not be pulled out as William's anatomy has been altered by previous surgery. In normal circumstances, this would be passed but with William's sever gut immobility it will probably just sit in his stomach for the foreseeable future! William perked up very quickly after the op and was very soon playing with his beloved "dadoot" We were in the hospital for a couple of days and when asked what the next stage was, I was told that really, there is no next stage. As things stand at the moment, William will be treated for things that pop up, like line infections, but there is really nothing else that can be done. It seems the transplant is out of the question. We are seeing another neurologist at the end of the month and we'll see what comes of that.

While we were in hospital we had the great news that lovely Emily got her lung transplant!!! You may have seen her today on Watchdog! Her blog is a total inspiration and, as I have said before, worth a read at www.pinkandsmiley.blogspot.com

Marathon training is going well and I did a 10 mile race on Sunday. I was very pleased to finish in 1 hour 37 minutes and 30 seconds, despite a long 2 mile slog up a hill twice in a 2 lap course. I have put the picture up here as it the first I have seen that makes me look half way athletic - I usually look as though I am walking! (the image has been paid for but, as yet, I have not been sent the version without the watermark. I will replace this when I receive it). The girl I am racing to the finish line is a fellow Strider team mate and we crossed the line at the same moment, recording the same time to the second! It was all very friendly and she gave me a lift home afterwards! As the long runs get longer it is going to get harder to fit them in and some very careful negotiation is having to take place, especially now Paul is back at work at the school!

The girls are back at school and Hope moves ever closer to her teenage years, spending most of her time e-mailing friends. They have been entertaining us with their dances, inspired by "High School Musical", the "Grease" for their generation - though not a patch on the original!!!

Happy New Year!!

Like most people, New Year is always a time I find myself reviewing what has been and what we hope, as well as what we fear, is to come. This Christmas, so many people wrote in our cards greetings about hoping 2007 is a better year for us! The same messages were written in the Christmas cards in 2005, when William was in hospital for more than half the year. Infact, the message was even there in 2004, following William's premature birth as a result of me being very ill and spending a month in intensive care before hand. To many people, it must seem like we have had a dreadful 2006. It started with William in hospital, where he had been for many months, and the news that he was probably not going to get better but that we needed to learn how to look after him in the home within a framework of pallitative care. Then, in February, we nearly lost him in a very scary incident of septacemia. He eventually came home later in the month and, after so long being a pretty fragmented family, we had a somewhat difficult period of re-adjustment where it was clear how much the girls needed their Mum and how difficult it was for them to adjust to having such a sick brother and feeling so different from their friends. Luckily, with the help of child bereavement counsellors and sibling days at CHASE, the girls are on fantastic form now. William continued to have medical emergencies throught the year but we have learned to deal with IV antibiotics etc at home now so he only stays in hospital when he is dangerously acutely ill. Of course, things had taken a bit of toll on Paul and I and we often took that out on each other Things were just beginning to settle when it became clear that William's problems were more than just his intestines and he was developing physical disabilities. We were told he had a wider neurological condition and then, the very next day, before we could get our heads around that, Paul had his accident. Paul was then in hospital for a month, followed by 3 months with an external frame on his leg. He is still in plaster and further surgery is a very strong possibility. On top of that, poor Paul had the flat he still has in Tooting flooded and, last night, just as the year was coming to the end, it was burgled (as found today by his parents who were round to get it ready for the huge rebuilding work needed following the flood).

When you look at all the facts, it has been a difficult year. I have purposely not put any new pictures here. There are plenty to post and they will come tomorrow, but for now, if you would like to see some picture, look back over the ones there are on previous posts. Think for a minute what you see. OK, there are the odd ones of William poorly and the washing that results from his never ending and uncomfortable fluid loss. What shines out, far beyond any of that though, is happiness. William is the happiest child I have ever known. Hope and Ellie are now back to their very happy selves. We have had some amazing times this year, CHASE has been a huge positive impact on us all and have helped us cope with things - as well as providing some memorable days: a special zoo trip, Legoland, family fun day, sibling days, music therapy, swimming, parties... Then there were the meetings with footballers and pop stars. Above all this are the wonderful people we have met and made close friends with because of the situations we find ourselves with William. I have spoken of these friendships before and how important they are. Many of these friends have lost their children. We nearly lost William and we nearly lost Paul - but we didn't and that must, surely, make 2006 a fantastic year!

So, has 2006 been such a bad year. Look at the smiles and judge for yourself. I think, a challenging year is what it has been and, will 2007 be better. Well, in those terms, probably not. William is in the same position medically as this time last year but now has emerging physical disabilities to learn to cope with. He is getting older and noticing things so this will probably be the year when he begins to understand some of the ways he is different to others. He will carry on having his emergencies. More surgery is a certainty, in fact, this begins on Thursday when he has to have a new hickman line. We may well have to think some more about transplants and other similar treatment decisions. Paul may well have surgery. Hope goes to secondary school. Of course, we still live with the very real fear that the very worst may happen to William this year. Some may look at this at the end of the year and feel the need to write, "may 2008 be a better year!" But this isn't a going to be a bad year for us, it it going to be another year of what is now normal for our family (Paul's leg is not so normal and lets hope that is all sorted by the end of 2007!!!). It is going to be another challenging year and, let's hope, an easier one because we are learning how to deal with these challenges so much better. We will have our sad times and I remain vulnerable to sudden tears when we are having a fantastic day because I never want this life with William to end and, one day, it probably will. I'm sure this year will see lots more happy photos of a family having a great time! There is also the small thing of the marathon on April - as if I didn't have enough challenges!! Above all, we will carry on making the most of every day and living 2007 as full as is possible. I hope you all have a fantastic 2007 too and for those of you who have given us so much support, from our parent's who we could never cope without, to those who leave such encouraging messages on here - THANK-YOU!!! It makes a huge difference to us.

Thomas Fest

I hope you all had a lovely Christmas. We had a really good day. I missed the girls and Chrismas is never the same when they are at their Dad's but this is the way with so many modern families and we made the best of it by making sure William had a really good time. He had a fab day. This was the first birthday or Christmas where he has really got the idea of presents and he really enjoyed tearing off the paper to see what was inside. The minute he saw the slightest hint that there was something to do with Thomas the Tank Engine inside he was overjoyed! It really was "Thomas Fest". He had some fantastic things, including his first football.

Wiliam was a shephard in the Sunday school nativity in church on Christmas morning. He refused to wear his head dress so really just looked like a little boy in a dressing gown! Sorry Shadow, no photos as the only time he looked remotely like anything other than William in a dressing gown was when he was around the fire with the others or carrying his lamb to Jesus and I couldn't take any then. He made everyone laugh by singing "coloured houses" from "Balamory" while the shephards were supposed to be sleeping and then, having been carefully pushed around the church and back down to the stable in Darlie Dair by a carefully trained shephard, he insisted that Daddy should have the lamb and kept on and on with "Daddy deep, Daddy deep" until I eventually gave it to Paul. Paul doesn't usually come with us to church but did think that, while he is still unable to sing in his professional choir on a Sunday morning, it may be worth coming with us to watch Wills entertain. William does usually manage some amusing moment in a church service. This is generally accepted but I did have to remove him from the church when he started singing the Thomas theme during the silence on Remembrance Sunday.

After church, we went for a walk and swing in the park and then had lunch and set to work on the presents. I got a fab piece of equipment, a GPS system, that measures how far and how fast I am running, as well as alarming to tell me to go faster etc. This will be invaluable for marathon training. Paul had an I-pod with a huge memory to store his hundreds of CDs. My GPS also tells me how many calories I burn while running and let me tell any of you who want to lose the festive pounds - it burns up LOADS!!! Another of the many benefits of running. Christmas cake and mince pies until April then! I did suggest that to Paul in jest but he did seem to think that making fruit cakes until the marathon would actually be a good idea. He could be right, packed full of energy and much nicer than energy bars.

Merry Christmas

The presents are all wrapped and under the tree and we are waiting for Father Chrismas to arrive. We have made it through the day with no obvious problems caused by William's split line and are looking forward to a quiet family Christmas tomorrow, although we miss the girls so much. William is a shepherd in the nativity play in the morning. This is a very quick post as there are chestnuts exploding in the oven but Merry Christmas everyone!!!

Pausing to remember

Well, I have cooked the ham, made the mince pies. I have the brandy butter and bread sauce to do and then I will turn my attention to wrapping the presents. Before I do, I am pausing to remember all those children whom are no longer here to enjoy their presents, and the pain that causes their parents and families at Christmas.
In particular, we remember those whom our close friends have lost, all sadly, before their 2nd birthday. We remember Holly, Hayley, Daniel, Dominic, Riley and Alex. To their parents and families, you are in our hearts xxx

Joining in with Christmas Fayre

Well, William has finally realised that he is missing out on something. We met our friends, Jo and her son Alex, for lunch yesterday and William wanted to join in. He was happy with an empty bowl but we decided to get him some play food. Later, when we went for coffee and cake, William very much enjoyed joining in with his wooden bread! He was chuffed to bits with his special food as he can safely chew on it and copy us. He has played with real food before (he will only touch very hard stuff like toast) but will panic if he gets the slightest crumb in his mouth. He was equally pleased with the wooden food during breakfast this morning, playing a great game of chewing the tomato and handing it round so we could share it with him and all proclaim in it "deeisus". I have a sneaking suspician that Father Christmas has managed to find a wooden orange for the bottom of William's stocking.

We are still hoping that this Christmas will be one spent at home. Unfortunately, William's hickman line has decided to split! we thought we would have to go back to Chelsea and Westminster today but, luckily, he has two lumens and we have sealed and clamped one off. He will need to go in for a new line next week but, as long as he doesn't develop an infection as a result of this, we can stay home for Christmas. We are nervous though as it will have been a huge infection risk to have the line split as TPN had leaked out so goodness knows what could have got in. Let's hope we are lucky!

The girls are at their Dad's for Christmas. This is always hard for me and I really miss them on Christmas Day. They will be home for New Year and we will open their presents, as well as ones from them to the rest of us, then. I have posted the pictures of the great skating trip on here.

Marathon training is going very well so far. I have my first long run tomorrow. I have discovered podcasts as a great way to pass the time while training. There is such a wealth of interesting stuff out there. I have some short stories read by Jarvis Cocker of Pulp, Dicken's Christmas Carol, The Russel Brand Radio Show and a podcast all about the series "Lost" (my absolute favourite!) to work through for now. I think some audio books would also be worth investing in as the long runs get longer.

Fundraising has got off to a good start too. Thank-you so much those of you who read this who have sponsored me!

My journey with William - all 26.2 miles of it!

Well, very exciting news has dominated my last few days. I am in the CHASE Hospice Care for Children team for the London Marathon on 22nd April 2007. According to the website, I have exactly 4 months, 9 hours, 4 minutes and 21 seconds to the big day! My training schedule began on Tuesday and it is not just the running, it is nutrition (today I tried a 5 mile run before breakfast and ran out of fuel pretty quickly!), sleeping habits, for me - insulin and blood sugar regulation and control of my asthma - a lifestyle change for the next 4 months really. I am very excited about it and numbered the weeks in my diary to coincide with the training programmes. I have only ever numbered the weeks in my diary 3 times before - when pregnant with each of the children. I will be following the training programmes very closely. It is fantastic to have a challenge and running continues to help me deal with the stress that goes hand in hand with looking after William. It also gives me space to think things through - total "me time". This morning was wonderful. It was so still and quiet in the fog. I was running up well-lit and busy streets but all seemed very calm.

As well as the training, I also have 4 months to raise as much money as possible for Chase. They hope for an average of £2000 from each runner. Our local running shop have offered to help back me in this as I am often in there with William and they felt inspired by how his situation has got me running. A shameless plug though - I can also be sponsored online at www.justgiving.com/runninglondonforwilliam. I was planning to begin a new blog about my training but, really, my journey with William and my journey to a 26.2 mile run across London are not really easily seperated. I think so much about what is going on with William whilst I run that there would, inevitably, be some overlap. So, I will integrate both here.

My thoughts, while running today, took me back to this day last year. It started as a normal day in the hospital. Riley (our room mate) had gone home and was coming for clinic. We had planned to swap presents and have lunch together. I was waiting and waiting but Helen, Adam and Riley did not appear. In the end, I went for a sandwich and, when I got back, was told that Riley wasn't coming because he had been taken ill on the way. I didn't know how bad this was until the ward round when the consultant appeared with tears in his eyes. He said he knew I would want to know what was happening and that it really wasn't good as Riley had gone into cardiac arrest for a very long time and was now on full life support. This was also the ward round when we were told that we needed to start considering that William could well need a small bowel transplant. It took a long time for that news to sink in as all I could think of was Riley. Eventually, I got a text from Helen saying what had happened and words I will never forget "I think we've lost our Riley" At that point, Riley was still alive. Riley died in his Mum's arms in the early hours of 22nd December - 3 days before his first birthday on Christmas day. My main thoughts that day were with Helen and Adam but that was also the day I realised how serious things were for William. My thoughts today are with Helen and Adam and all the family.

Meanwhile, William's geneticist has been thinking further and discussing him with international colleagues. People are really fascinated with him. They do not feel it is a syndrome like Costello Syndrome. The current thought is that it may be an incredibly rare syndrome that has only been seen in a handful of children. Children have the kind of gut problems William has but most have died in infancy so the other things he has may well develop if the child survives longer. These children have characteristic hair anomalies and William does have a very strange texture of hair, as well as a very sparse coverage. The next step is to send his hair for chemical analysis.

For Hope and Ellie's school holidays began yesterday with a trip to the ice-rink at The Natural History Museum. I was about to post some pictures but have realised they are not yet downloaded so watch this space!

And they haven't changed a bit!

Looking over the last post it has struck me that neither John Terry or William have changed at all in the last year! William looks a little more grown up.

Hi John, Lovely to see you again!

We were at the Chelsea and Westminster Christmas party on Friday. It was great fun and William tried out his "trolly" for the first time. This is a walker to help him when he wobbles and falls. He sees it as more of a toy at the moment so uses it for a bit before discarding it to wobble and fall as usual so we are still having to resort to "Darlie Dair". Hopefully, he will get used to the trolly and use it a bit more with time.

After the party, we went up to the ward to give the staff a card and chocolates and - who should we see but Chelsea Football Team again. I genuinely had no idea as they came a week later last year when we were in. We chatted to the ward sister while they were on the ward next door and then they all came through and Wayne Bridge came straight to William. I asked for a photo and he got as many of the guts as possible in. He then asked the coaches with the presents for one for William and we found a 'Pirate Pop-up Game" which looks like a lot of fun. They gave him a cuddly dog and a Thomas the Tank Engine set last year and they have made him very happy indeed! We chatted to the pharmacist about William's IV drugs and were just getting ready to go when a very familiar face walked through the door. It was John Terry who had been running late. It was John who gave William his presents last year and I completely lost myself and smiled at him immediately and said "Hi, we met you here last year..." He was great and came down to William's level for a chat and a photo. Later, I met up with Helen, Riley's Mum (there will be a lot more about Riley over the next few days). She had just had a meeting at St Mary's Hospital where Riley suddenly died a year ago this Friday and we were meeting for a debrief and for her to come back home with me for the night. She really wanted to see Chelsea as Riley had been in the hospital nearly a year and went home just ahead of the visit last year. In the end, they came on the day he died and the whole event has become especially poignant for us all. It was really quite fitting that she had planned to meet us at the end of the party, after going to St Mary's. We were having a coffee when the ward psychologist came by and told us the players had gone to catch the children still at the party and were then off to the canteen. We casually popped down to "say a last goodbye to the play staff at the party" but Helen didn't get up the courageto say hello so "why not a quick cup of tea in the canteen". In the end, Helen managed a cheaky hello and autograph with John Terry and played it cool, insisiting he signed the pre-signed card again to show it was genuine! No-one could have possibly known the conversation we were having around the day and the huge meaning that both Helen and I have attached to the team's visit to the hospital. Last year they came on the day my best friend in all this lost her gorgeous little boy and the day I realised how serious a position William is in. The visit from Chelsea symbolises all this, but it also symbolises the amazing life William is having and all the exciting things he does. One day, I will write to them and tell them how hugely important visits like this are and how much it means to all concerned. We always look on John Terry and the other players we have met in a very special way when we see them on the TV, and those Crystal Palace players too. They almost seem like friends because what they have done for us is so important in lifetime where every minute counts. At the moment, I am overwhelmed with the effort and kindness people have put in to brighten things up for children like William and am in the middle of writing Christmas cards to all those I feel the need to thank at this time of year when you find yourself taking stock. I am rambling now so will get on with them!

Nativity plays and parties

I make no apologies that this post is crammed full of pictures and the text is going to run out well before the photos do so do scroll down and look. We are well and truely in the throws of Christmas here. Our week began with the carol service and nativity play at Hope and Ellie's school. Ellie was Mary and, as you can see, adored it! The retiring collection was taken for CHASE and we all found that very moving. William and I were at CHASE yesterday. It should have been William's nursery party but he has been unable to go to nursery for 3 weeks because of Great Ormond Street, his line infection and the timing of the IV antibiotics he was on until Sunday. He has had a nasty cold too which had turned into bronchiolitis. He is on oxygen overnight again at the moment which is a bit of a set back as his chest has been so good since the surgery he had last year. He is clear of bugs now but seems to have a lot of inflammation and "gunk" on his chest still so we are doing physio and loads of inhalers and a little whiff of oxygen to keep the levels in his blood up overnight. Although his is not too poorly and very happy, he is easily tired and overwhelmed and very clingy so I felt that he would get upset at the nursery, in the same way as he did when he first began. He would have been on the TPN and so in "Darly Dair" too which is not usual for nursery as it is usually in the afternoon. This would have frustrated him. In the end, we went to the hospice for some relaxing music therapy and some crafts. I was sad that he missed his first nursery party. When we got back, all his cards and a present and Tellytubby balloon were waiting for him which made him very happy (especially the balloon).










Today, we were back at Great Ormond Street, but this time for the Christmas party, and wow, what a party!!! The girls had been given permission for a day off school to come too and so we went for all of us, even though William is still a bit under the weather. He totally enjoyed it too! The party was in a marquee in a children's park behind the hospital. As we were waiting to go in we had carols from the cast of The Phantom of the Opera and met dancing snowmen and rabbits. Once in, the children were given cowboy hats and tiaras and we were given a time to see the REAL Father Christmas in the grotto. We were then flanked by storm troupers as we went into the main party area - even I found that exciting! Batman and X-men were there along with Felicity Wishes fairies (Ellie's favourite!). We saw Father Christmas first and then Ellie settled down to make fairy wands and tiaras and both Ellie and William made wish boxes and Christmas stockings. Hope was not too interested in the crafts and opted to sit at the table and enjoy the sweets and chocolates that were bought round on platters. Hope was very excited to meet Kevin Wicks from Eastenders and both she and Ellie were very excited about meeting 'Girls Aloud". Their music, along with other popular hits, was playing for the disco and as the children left they were given that music played on a special CD with messages from the artists. That has already enjoyed plenty of airplay! William's absolute favourite was Rudolf and the cuddly rabbits and snowmen. When he saw them wondering around, he held out his arms and said "cuddle" and then cuddled and cuddled them with his head buried in their fur. He must have made their morning! As we were leaving, one of the organisers commented on how happy William is and how she had been watching him and every time she looked at him he was beaming and laughing. That makes me so pleased because he is a happy little thing that brings so much joy to us and I am so glad he does to others too. We struggled home with the things William and Ellie had made, balloons, huge teddy bears and goody bags, given by Father Christmas, filled with books, comics, magazines and bits and bobs. Ellie kept on saying that today was the best day of her life and thanked William over and over again for being in hospital so she could be there. It is lovely when all 3 children have such a good day together. I was so impressed with the party and the generosity of those whon gave their time, money and those who donated gifts. We were lucky to have been at GOSH at the time the party and who to invite was on people's minds. There are so many sick children who are cared for in other hospitals though and I do wish that such opportunities were available for them too. It was a truely magical day and the girls can't wait to tell their friends and show their autographs and photos. It was a day we will always remember.

What a difference a week makes!

This is what William looked like a week ago - very pale and poorly and "panda eyed". One week on and, thanks to strong IV antibiotics and a blood transfusion, William is once again bouncing and happy. We kicked off his very busy Christmas social life yesterday when we were back to Rupert Bear Ward but this time to meet members of the Crystal Palace football team rather than for more treatment. William has been at home in isolation since last Thursday due to low white cell counts, signalling an immune system weakened by his infections. We had the all clear in time for the special visitors and William was very pleased to be back on his beloved tram and bus. He enjoyed meeting the "foibaers". Just as well because he is going to be a club mascot with Ellie at some time later in the season. Football clubs do an awful lot to help children like Wills. This is the second time he has met a football team as he met Chelsea at Chelsea and Westminster last year. The idea of him being a mascot at Crystal Palace is a lovely one as such special occasions ar fun for William and, more importantly at the moment, for Hope and Ellie as they treasure these special memories (as do I). We will wait until he is a little older but it is a difficult balance sometimes as weeks like last week serve as horrible reminders as to how sick William can be and how every day is a precious one.

It seems that the infection William had was caused by sedation given to him as a syrup into his tube at GOSH. His intestines do not move so this then sits around and ferments, resulting in painful gassy build up and explosive nappies. The fermenting sugar becomes a breeding ground for gut bugs which build up so much that they escape into the blood stream and into his hickman line, causing septacemia. We just have to keep our fingers crossed that the bugs are killed, rather than dormant, and that they won't come back when his IV antibiotics finish on Sunday.

With William safely home, we launched into the Christmas season on Friday. We are all keen to make the best of it this year as William is home. Of course, things can change very quicky so we are making the most of every day in Advent so we have at least made the most of what we have if William does end up poorly again later in December. So, the decorations are up and glitter is all over the dining room floor. Gingerbread has been baked and is on the tree. On Saturday, Hope and Ellie treated us to a nativity play. Ellie had one of those moments every little girl dreams of at the end of last week when she was told she is to be Mary in the school nativity. We are looking forward to that and, judging by her performance when the Angel Gabriel visited her in her play with Hope, she will be a fantastic Mary. William will make his nativity play debut as a shephard on Christmas morning. The other little children are angels but the sunday school leader rightly felt that a shephard costume may be easier around his TPN lines and "darlie dair".

It is a line infection!

Well, we have it confirmed that William has another line infection. These things come on SO suddenly and make him so poorly. We have come very close to loosing him with one so we are pretty nervous about them. He is now on the right IV antibiotics - 3 of them. We will find out in the next couple of days if it will be necessary for him to go into theatre to remove the line and put a new one in. I so hope this isn't the end of a spell of being poorly - it is getting so near to Christmas. He intestines are also playing up with loads of wind, aspirate and explosive nappies. We think this is due to some syrupy sedation he was given at GOSH last week that is sitting around in his intestines and fermenting as well as causing an infection that has now got into the line. Well, have come home to tea, thanks to Granny (Paul's Mum) and am now back to the hospital.

Poorly again!

We are back in hospital again as William woke up from an afternoon sleep with a temperature of 39 degrees, way over our 38 degree cut off for a potential line infection. We had 2 rapid response cars and an ambulance this time - very dramatic. We now wait in hospital for 48 hours to see if it is a line infection or not. If it is, we will be on 2 weeks, if not, we can go home after 48 hours. He does have a cold so I am hoping it is just that. Have just popped home to pack so must get on.

Great Ormond Steet

We finally made it to Great Ormond Street this week for the test that everyone has been waiting for - the duodenal manometry. This is a measure of the peristalsis, or muscular movement through the gut, in response to food. The visit was pretty eventful from the start. I was running late and harassed and stressed as ever in these situations, not helped at all by the fact that Paul still has his leg in a cast and I was travelling on packed commuter trains with William in his "Charlie Chair" (or rather, "Darlie dair") with everything we needed for the next 3 days on my back in a huge mountaineering, and very heavy, rucksack. I eventually decided that I was going to be late and it really wasn't worth rushing to be there for 10 when it was highly unlikely anything would happen before lunch time so rang the ward and apologised and began relaxing a bit. When we arrived near the hospital we saw police everywhere. I eventually asked what the fuss was about and was told that Charles and Camilla were in. Well, a big hospital, I thought and spent the next 20 minutes totally lost in it and wondering if I'd bump into them. I finally found our ward and noticed that there were more and more people in suits the closer I got. When we walked in, we found that our ward was the very ward the Charles and Camilla were in. We got to see them briefly but, had I not have been so late, we would have got to meet them properly. They were there to open the new wing the ward is in. Very exciting. I know this visit has been a long time coming but we weren't quite expecting a royal welcoming party! It is a shame we didn't get to have photos for William's scrap book. I don't think the photo would have knocked the photo with John Terry from pride of place!

William had 2 days of tests and spent 2 nights in. He had an endoscopy and colonoscopy (tubes down and up) to see if there is any inflammation that could be treated. He also had biopsies taken to look at the histology of the gut. The scopes looked OK, as they have done in the past. The following day was the manometry test we have all been waiting for for so long. The hope was that this would show us something that could guide future treatment, such as surgery to remove the worst effected part of the gut. At the same time, he had an EGG, measuring the activity of the stomach via electrodes, similar to an EEG but on the tummy not the brain. The photo shows the complex computers and machinery all around him for these two tests, and Thomas the Tank Engine, the most essential bit of kit of all, keeping him nice and still enough for the measurements to show anything other than wriggling. He was sedated throughout but, having been sedated the previous day, he wasn't about to loose a day to sleep again! The manometry is very clever. A catheter is inserted in the gut with a set of holes all the way down. At regular intervals, water is pushed through the holes and the gut reaction to the water measured via the pressure it exerts on the catheter. The gut should squeeze in repsonse in a rythmic fasion - peristalsis. They decided only to use one measurement for William as the catheter all the way down would have interfered with his own tubes and any information at all would be a useful start. They used his own tube that is inserted just below the stomach to measure the reaction of the top end of the gut to the water. Once he was sedated and lying flat watching Thomas it was clear that his gut didn't really react at all. He seems not to be able to squeeze his food and drink down the gut at all. We are still waiting a deep analysis and formal report but the initial view of the consultant from eye balling the initial data is that William's nervous system is failing to tell the gut to react to the water. This fits with his current neurological picture with the ataxic walk and deformed feet and, as all the gut has also got worse as he has got older (he did actually feed for a while as a baby) it sadly does suggest a degree of degeneration in his condition. We had hoped this test would reveal a solution but it seems that, unless something can be done to fix his neurology, there isn't really anything that could be done to make his guts work again. A transplant would certainly not help as the problem appears to be his nervous system, not the intestines themselves. We still have to wait for the more detailed analysis and, you never know, there may be a glimmer of hope in there, but it looks unlikely he will be able to come off the TPN at the moment. Luckily, TPN is keeping him really well at the moment but it does keep him tied to a drip 18 hours a day and means he lives with the constant threat of septacemia from line infections and the knowledge that this will, eventually, destroy his liver. We also don't yet know what the underlying neurological picture is and what else this will do to him over the coming years. All in all, we are a little closer to understanding what is going on but no closer to a cure or solution. We are seeing our usual gastroenterologist on Friday next week so don't have too long to wait to learn what comes next. We had predicted there would be another long hospitalisation after this one but it looks now as if there wouldn't be much to gain from that and it is more a case of getting on with it, enjoying every moment and hoping that something can one day be done. In the meantime, we have great support and therapy to make sure William gets the best out of life and his smiles and laughters show that he certainly does! The clown doctors certainly got a smile and a laugh from him (eventually, once he stopped being overwhelmed).

A lovely day

Today was a lovely day and William had the time of his life. A few days ago, I was walking form playgroup with William and a guy on a bike stopped us and told me about a cycling club at our local running track where there were loads of adapted bikes so everyone can join in. It is called "cycling for all" and I have never seen so many different types of bike. We went down this morning to investigate and the children had a great time (as did Mum). It was lovely to do something active we could all join in with. William tried a tricycle where he could wind the handle bars around with his hands to power the wheels, rather than use pedals. He really got the idea but, unfortunately, could not reach the handle bars and sit safely at the same time (I'm sure steering would have been interesting too!). So, instead, we tried an adapted side by side bike and a really cool, but terrifying to begin with, T-bike where William sat in a chair in front. The T bike has 2 wheels at the front and one at the back, like a back to front tricycle. It was really hard to steer until I got used to it but we were quickly away. William beamed and beamed and instructed "come on" and "ready steady go" whenever we paused. It was pretty hard work, especially the "side by side" as it was a recumbent and much tougher on the thighs than a usual type of bike.

The fun continued in the afternoon with a "tuneful teatime" tea dance in our new church hall. We all went, even Paul, and had a lovely afternoon tea and danced to the orchestra. Well, William, Ellie and I did. Paul was not quite up to dancing yet and Hope was busy having chatting by the water feature in the courtyard. It is meant to be a remembrance garden but the children are adopting it for their "heart to hearts".

All in all, a fun day with much smiling and laughter.

Grandma and Grandad arrive tomorrow, ready to look after Hope and Ellie while William and I go into Great Ormond Street for 2 nights on Tuesday. Let's hope they don't cancel again!

Planning for the future

Another busy week, although the main reason why I haven't blogged for so long is that I have been totally knocked out by a nasy fluey cold. Since my last entry we have visited the school it it likely William will go to and begun the lengthy process of getting a "statement of educational needs" for him (getting him "statemented" in other words). We have also been to see the neurologist and seen our occupational therapist, who fitted William with the rather fetching support belt shown in the picture. William has found time to play as well. He has a fantastic Link worker who spends 6 hours a week with him so I can get on with doing some work. He loves to play with he books and lego and sticking and paining... with her while I get on.

The visit to St Giles was really good. It is a lovely school, full of happy faces and photos of disabled children achieving things in sports, outdoor pursuits, theatre and art, all sorts of things, on walls all over the school. It was lovely for William to see so many other chldren with wheelchairs (or "Charlie Chairs") and tubes just like his. This has got to be better than being the only child in a school. There is so much going on for the children there and they have a rule that if an activity is offered to them, it must be suitable for all the children or noone goes. The children have plenty of opportunity to reach their goals too and one girl we met is doing 8 GCSEs as well as learning to play the drums. The children get all their physio therapy, occupational therapy, hydro therapy, speech and language therapy, wheelchair, seating support, peidro boots and brace and splint assessment and fittings, medical reviews etc all at school so there is minimal disruption from lessons to attend hospital clinics. It was a really happy and positive school and we felt really lucky we are in the Borough that has such a school. Ofsted have rated it as a Beacon School of its type. As we are in the Borough, if William's statement says this is the right school for him he will automatically be accepted. We are hoping he will have a link into a mainstream school for an afternoon a week so he can also integrate. I would accompany with him for this to avoid the problems of needing a nurse on site. Of course, St Giles has an on site nurse who will be able to deal with everything involved in caring for his line and dealing with the TPN.

The day after visiting the school, we saw the neurologist who does joint clinics at our local hospital. This whole problem with the double referral is still going on and we have another neurology appointment at Chelsea and Westminster next month. The neurologist we saw agreed that William's walking and posture are a concern but has not had the benefit of seeing him over time to watch how it has deteriorated. She said it could be a syndrome or a degenerative condition but could also be a feature of his prematurity - although not one she saw as something he would grow out of, more a damage that was done as a result, like a form of cerebral palsey. She did suggest things could be helped to a degree with surgery. The first thing she wants to do is to get a better MRI brain scan under general anaesthetic and do a lumber puncture to look at the chemistry of his spinal fluid at the same time. She hopes all this will be done before Christmas. With the tests at Great Ormond Street next week, poor William is going to have an eventful end to the year. I also expect next year will see some more hospitalisations while we try things as a result of the tests. This will very likely involve some surgery as there are a lot of procedures that have been on the cards for sometime and awaiting the Great Ormond Street tests, such as the illeostomy and laparotomy and, of course, the small bowel transplant assessment at Birmingham that still hangs around as a big possibility. It is always confusing to see new doctors though as we seem to be moving in on a diagnosis but then someone else has new ideas. This doctor seemed more inclined to look on his problems as potentially a couple separate issues rather than look for some underpinning genetic condition. She did agree he has some interesting features like "sparse hair" and wants to know what the geneticist is thinking at the moment. I think things will be a lot clearer by the end of next year but I always find it disapointing when a new doctor doesn't immediately say "this is a clear example of X!"

Today, we were visited by William's occupational therapist. She fitted his lumber support but also wanted to talk about our house and the adaptations she feels are necessary over the next couple of years. It seems a bit premature to think about this but the grant applications take at least a year and she thinks it unreasonable for us to be carrying him up and down the stairs beyond the age of about 5. By the time we have thought about the solutions, been through the grant applications and completed the building he will be about that age so things have to be thought about so early. The OT thinks we need a wheelchair lift into what is currently the girl's room, in which case we would also need a loft conversion for them. We also need a walk in shower for William to use in a wheelchair if necessary. This is gutting as I love my bath and we don't have space for both. Another option would be to extend out at the back and build William a downstairs bedroom and bathroom and keep upstairs as it is. Of course, this is all very expensive and probably way beyond the grant. The last resort would be for me and Paul to get a sofa bed downstairs and put the girls in our room if William has to go in there. So much to think about, you just don't dream of all the implications when problems emerge in a child so young. The grants are generous though and we are so lucky these things exist. I must say, I am very pleasantly surprised at how much support there is out there for families in our situations. However, hospices still have no Government funding. This leads me onto my next fundraising venture for CHASE but this has been a long enough post already so that will follow another day...

A Happy Boy at Playgroup

Hooray!! William managed a whole afternoon at playgroup today without the need to hold onto my finger! I stayed in there all afternoon by himself and seemed to have a lovely time and even managed to cover himself in orange paint. Unfortunately, I don't have a lovely smiley picture to accompany this as I was in the parents room with a cup of tea!

After playgroup we had Ellie's parents evening. She is doing really well and is a "joy to teach". We have Hope's tomorrow. Tommorow will also find us visiting St Giles, the school it is likely William will go to for nursery in September. We will go with our Portage worker who will then begin the long process of obtaining William's statement of special educational needs. St Giles is a school for children with complex medical conditions and/or physical disabilities. There, he would get his education, together with physio, occupational therapy, speech and language therapy, hydrotherapy and nursing care.

On Friday, we are seeing the neurologist about William's ataxia and involuntary spasms and movements. That will be really interesting.

A quick update

A quick update, after a phone call from Mum saying she has missed the regularity of posts lately! I really must get back into the habit of doing this more regularly as there is always so much to say when I leave it to the end of the week.
It has been another busy week with lots of coming and going for William. This photo is with one of the nursery nurses that come in to play with William and other children who receive pallitative care in the home. He loves this one-to-one attention and we also get it from our fantastic volunteer who acts as a link worker. This is provided, following assessment, from the children with disabilities team from social services and the workers are all volunteers, spending hours in children's homes so parents can get on with other things. For me, this means I can actually gets some work done. William's occupational therapist fitted him for a lumber belt to try and support his posture more. He needs a custom made one to accomodate his tubes, which is pretty cool really as, rather than the standard white corset, his will be made out of blue and orange neoprene (wet suit material). She is also going to talk to the physio about his walking and involuntary spasms, to see if we can start some exercises and hydrotherapy. He had a really bad day earlier in the week when he was so tired be could barely walk at all. It may be that we start looking into a walking frame for such days. We have been encouraged to start using the wheelchair in the house when he has bad days for now (not that we have an awful lot of room for that!). As always with Wills, so much is watch and wait and see how it goes. It will be really interesting to see what the neurologist says next week.



This week, William has had visits from his link worker (twice), nursery nurse, portage worker, occupational therapist, community nurse, respite nurse and CHASE hospice community nurse! We are SO lucky to have so much support. However, the pallitative team and CHASE receive no government funding and rely soley in charitable grants and fundraising. Wills and I are off to the hospice today so I can take part in the Losely Park 10K run tomorrow to raise money for CHASE. It is a lovely sunny and crisp November weekend and it will be an off road run so I am really looking forward to it. The pictures our club took of the cross country last week have now been put on the web. I look SO much better on the second lap so will make sure that I warm up properly tomorrow. Will post how it all went tomorrow but for now, I have less than an hour to finish packing, get WIlliam flushed off his TPN drip and get out of the house!