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".

Monday, November 27, 2006

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.

Sunday, November 26, 2006

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.

Friday, November 24, 2006

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).

Sunday, November 19, 2006

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!

Tuesday, November 14, 2006

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...

Wednesday, November 08, 2006

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.

Saturday, November 04, 2006

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!

Sunday, October 29, 2006

Small world...

It has been another busy week. I really should get back to the habit of updating this blog every day, or at least more often than once a week. It was half term so no playgroup for William and no therapists either. That all kicks off again this week with physio, OT and Portage, as well as frst day back at playgroup on Thursday. William still can't cope with not being able to see me, or, at times, even touch me at playgroup. He is so happy to play with other people at home but, once out, is such a Mummy's boy. Thye physio and OT are coming to assess him for his pelvic support. His walking has become visibly more "unique" over the last few weeks and he has few more bumps and bruises than before. He can still get around though, and with much speed and vigour and continues to impress people with his sheer determination. People who haven't seen him for a couple of weeks are telling me that he is more jerky and wobbly. He is due to see a neurologist in a couple of weeks and I am really looking forward to seeing what she thinks. I say "due to see" because there is some confusion here. William saw his community paediatrician a couple of weeks ago, who referred him to the neurologist who holds joint clinics at our local hospital. The next day, we saw our local hospital paediatrician who referred him to the neurologist at Chelsea and Westminster. So, on Wednesday, we got an appointment to see the neurologist locally and Thursday, a letter from the community paediatrician to cancel the referral in light of the other one - are you still with me? Well, I called the hospital and they still want to see him at the joint clinic. Well, we'll see!

This week has been a busy and active one for Paul and I. The girls have been at their Dad's all week so we have had a bit more time to play with. I made it into the BLISS office for a day and got a lot of work done at home. I also found the time to run the Croydon 10K on Sunday, by coming home ahead of the rest of the clan from the hospice. I did it without any walking and in 56 minutes. It was a hilly course so that is not at all bad for a first attempt. I was pretty tired at the end so was glad there was no school run in the morning! One advantage of Paul being home so much at the moment is that I have had the freedom to build a good foundation with the running club and get out enough to feel part of it and make friends. This will be a lot harder when Paul starts working evenings and Sundays again. I did a cross country league race yesterday. That was really hard going and I trailed behind all the more experienced club runners. There were two laps and I found it really hard to breathe on the first one and was about to give up but managed to get it together and began to close the gap on the runners in front on the second lap. MYy performance on the first lap was not helped by my desperate need for the loo (nerves). I was holding a bottle of water and could not forget about it with that swishing about in my hand. Every bush I passed was assessed for privacy for a wee and, the more uncomfortable I got and the further behind I fell, the more I thought it wouldn't matter if I did stop for a wee. I'm glad I didn't though because what I didn't realise is that there were about 4 runners behind me! When I passed our supporters, I threw them the bottle and felt better almost immediately! Despite all this, I took 51 minutes for 5 miles cross country, which I'm told is pretty respectable as the effort is equivalent to 7 miles on road. I really like cross country because it is lovely to get off the road and into the "country", or as close as it gets in South London!

Paul has been able to walk about a bit, albeit very very slowly, on his crutches so we popped into Croydon a couple of times for a slow wonder round the shops together and a coffee. I also found time to meet up with my friend, Jo, for lunch on Friday which was really lovely. Paul joined us and it turned out Jo used to work with one of his best friends. On Friday evening we had a call from a family we were next door to in the neonatal unit to tell us they have moved just down the road from us...small world...unless you are trying to run or hobble about on crutches in it!

Friday, October 20, 2006

Mulling things over...

Well, this week has not been quite so hectic as previous ones. I actually managed a day in the BLISS office yesterday and had a most successful meeting with a group of doctors and nurses who are overseeing the research I am doing (won't go into this at lengths here!). When I arrived at the office, I was told by my manger that the boss wants to send me off to America as they are alredy implementing programmes of care for premature babies that we are exploring introducing and evaluating over here. My immediate reaction was excitment, followed by that heavy sense of "yes but how on earth could I work everything out that I would be leaving behind?" After a chat with Mum I realised that this is exactly what the hospice is here for and, not only would this trip be of huge importance to my work, it would do me a huge amount of good personally too. So, we can work something else and I will be telling them, yes! We have not yet left William at the hospice alone, I think I have always hoped this condition is somewhat temporary and we can do all the things we want to later down the line. However, with the addition now of wheelchairs and mobility problems, it is high time the girls and I looked to do some of the things we miss, like rock climbing (indoor with full safety kit!), rambling and camping. We will look to go on some kind of family adventure weekend to incorporate all these things sometime in the Spring.

It is interesting to mull things over and compare the impact of the path our life has taken on Paul and I. It is a similar pattern among other Mums I have spoken to as well. Mums seem to undergo the biggest changes in life. I have had to give up full time work and cope with a much smaller income. This has been a positive thing in many ways as I am there for all 3 children much more than I used to be and I am the one at the school gates in the afternoon to hear all their news as they come out of school. Friends is another interesting issue here. Paul's friendship group remains pretty much unchanged. However, alongside old friends, I have a huge set of new ones who I have met in relation to some aspect of my journey with William. Some at the hospice and other groups we are involved with, some from hospitals, others from message boards and still others just by word of mouth through various networks because we share something in common. It is often these new friends who I turn to the most for support, to share news and feelings, to discuss how I feel about the latest diagnositic theory or piece of equipment... When Paul had his accident, it was these friends who I knew would understand my context and how I felt about it all. There is an instant bond and this makes new friendships very close very quickly. This seems to be something that women in our situation seek more than men. However, at times, I can feel very excluded from the life we had before and that Paul still enjoys. Paul often gets invitations to events such as weddings and parties but the logistics of bringing the children, especially William with the restraints of TPN etc, it inevitably means that I have to stay home. Sometimes, I get the feeling people don't invite you to things when you are in this position because they just don't see how the logistics will work. It can get very isolating - another reason why the new friendships are so important. I have had this conversation with so many other Mums who all experience the same.

Another thing I have been mulling over is they different ranges of conditions and disease progression patterns. Since we were told that William's condition may turn out to be a degenerative one, I have wondered to myself what is harder - to have a child born with very limited physical ability that remains at a static level or to watch a child loose his or her function over a period of time? The first may enable you to get used to things but you never have the memories of that child running around and doing things. With a degenerative condition, you have to endure the agony of watching your child deteriorate in front of you, however, you have precious and happy memories of years that went by before. The saddest thing I have seen is a child who was OK but who had a tragic accident where a fall led to a blood clot on the brain. I think that is the hardest situation of all, suddenly, just like that a well child becoming profoundly disabled. Of course, this can happen to anyone at any time. This is why some disabled people in America term able bodied people as "currently able bodied" . This is why we need to enjoy every second with all our children and this weekend we are off to the hospice again to do just that!

Saturday, October 14, 2006

A very busy week (again!)

Well, this has been another crazy week. I spent last Saturday hunting down ways of keeping William warm and dry in his wheelchair. We had a hooded buggy cover from when he was small. As you can see in the picture, he is not overly impressed with being covered up by this but it is a very useful thing to keep to hand for a sudden downpour! Much better is a all-in-one waterproof suit with wellies. The chair will get wet but a very useful addition to the bag is the type of towel you use for hiking and triathlon - small, absorbent and light both when wet and dry. We managed to find some very thick fleecy trousers that we will use kind of as a "coat for legs" as he would cook indoors in them. The Disney shop had a sale on fleecey blankets so we got a very cool "Cars" one in electric blue with a red trim - very colour co-ordinated with "Charlie Chair". So, William is all set for any weather. The next thing we found was that any bag I carry in my hand or on my shoulder comes in very close contact with the wheels. A rucksack is the way forward and, luckily, Millets have some really funky ones, for children as well as adults so I kitted out myself and Hope and Ellie as well, as a softner to the fact they will have to carry their own things while out now as we have done with buggy baskets etc.

Having got so well kitted out we have been out and about a lot, mainly this week to hospital appointments, but we have also found time to get to the park and feed the ducks on Hope's sailing lake. Feeding the ducks is something his Charlie Chair enables him to do and he couldn't have done in the buggy because he was not strong enough to sit up straight in it. As you can see from the pictures, he can still run around and play on swings and all the things a toddler loves to do. He is just doing these things in an ever more wobbly way and falls over a lot. He also gets very tired. The chair is there to give him another option when he is a bit too wobbly, as well as giving him some independence when stuck connected to a 4kg rucksack of TPN!

We are just about getting used to being out and about with the chair. At first I felt very self-conscious, something not helped by the highly unsubtle sirens that sound as the bus drive lets down the ramp. These feelings are also not helped by the reactions of some people. Most are great and very helpful, but there are many others who will ask questions. This can be fine but the worst are those who pass comment such as "poor little sod", "well these days they can fix anything" or "but he is a lovely" - he is a very happy little boy, certainly not a 'poor little sod', 'they' can't fix anything and why shouldn't he be lovely! Another thing I hate is people stopping their conversation to talk about William, in voices perfectly loud enough for me to hear. This is something many of out friends at the hospice are going through at the moment as the children move from buggies to wheelchairs.

This week saw three hospital appointments. The result of two of them was to be referred to another two consultants, bringing William't total number to 8! He will be referred to an audiologist to check his hearing and to a neurologist. As I have mentioned, William is getting more wobbly when walking and waddles a lot. He also finds it increasingly difficult to sit up straight when unsupported. He also has some uncontrollable spasms when he is very happy. This is really cute, one of the pictures shows one of these little moments. He had a brain MRI scan recently and the good news is it looked OK overall. He was not still enough to see the fine detail. However, there does seem to be an element of deterioration in aspects of his physical development, particularly where his pelvis is concerned. His feet are still growing in a curve. This has led his local team to think that his condition could be a degenerative neuro-muscular condition, like muscular dystrophy. For now, we watch and wait and see how things go. He has all the right services in place and there is nothing more that could be done. It is clear that his final diagnosis is going to take some time yet. He is still very young and you often need to see longer periods of development to diagnose these kind of conditions. If things deteriorate any more over the next 6 months or so, he will have nerve biopsies to see if there is any evidence of degeneration. It is very hard having to wait for answers like this but we can fully understand that so many conditions can seem very similar in a child so young and the differences often come in disease progression. You have to give it time to progress to diagnose the problem. Another finding from clinics this week is that it appears William has shrunk two centimetres over the last couple of months, taking him completely off the centiles. This could be due to problems measuring a small wriggly child but could well be due to his posture. It will be interesing to see if he "shoots up" when he gets his pelvic support in a few weeks!

As for the rest of us, Paul continues to heal very slowly getting ever more frustrated with being stuck in the house. I don't think my recent running hobby hels that ;-). I went into the running shop for some shorts for a 10K run next week. This will be the first time I officially run for my club so have to be in kit - how strange for a girl who has always hated any sport that involved running! I often take William into the shop when picking up bits and pieces and, today, they said that they would like to support me in the fundraising runs I do for the hospice. That is really exciting. I am learning that when I have sufficient adrenaline I can keep going. When this is not the case my asthma kicks in and I just can't do it. I would love to do the London Marathon for Chase - would the adrenaline of the day keep me going (of course, walking a fair bit of it!)? The girls are very happy at the moment. They are off to a sibling support day with Chase tomorrow. William is very tired and hasn't slept in the day for a few days so it looks highly likely Paul and I will get a very rare couple of child free hours tommorrow afternoon!

Saturday, October 07, 2006

Jeans for Genes

Today was Jeans for Genes day and we decided to celebrate with a party! The girls invited friends round and they had loads of fun designing funky jeans outifts for paper dolls, as well as other usual party activities such as eating huge amounts of crisps and sweets! It was a great time to have fun and also raise awareness of genetic conditions. Earlier, Hope and Ellie talked about William and sold fundraising keyrings and mobile phone charms in their classroooms (although the school did not allow jeans to be worn or for the whole school to participate). In a way, this was nicer for the girls as they felt they were doing something special for William among their friends. In the meantime, William and I took the keyrings and charms to our local pharmacy and butcher who had agreed to sell them. The day finished with some friends round for some Mexican food and the "Are you a jeanious challenge!" Our night respite nurse is here this evening so she came early to join in. It was lovely to socialise with her as we are usually quick to bed to make the best of the rest (although we do share an interest in mindless TV such as Big Brothe and the X Factor, something Paul hates so I do often tarry a bit on bed time to gossip about the latest developments). Speaking od which, I really should be making the best of my night off nappy and bed changing, gastrostomy draining and pump alarm attendence and getting some sleep. Short and sweet tonight!