Tuesday, December 26, 2006

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.

Sunday, December 24, 2006

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

Saturday, December 23, 2006

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!

Thursday, December 21, 2006

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!

Sunday, December 17, 2006

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!

Thursday, December 14, 2006

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.

Wednesday, December 06, 2006

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".