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!

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!

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!

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!

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!

Check out the wheels!

William got some new red, shiney wheels today! Check out his smart wheelchair! Again, what a grown up boy! We thought we were getting a mobile seating system, a bit like the chair he now has at home. However, after assessment and a long discussion with the wheelchair assessor we decided to for this self- propelled chair. He has some extra padding to support him and a harness. A special neoprene band has been ordered that can be used as a support for his back by holding it to the chair when he is tired. However, we have also been told to give him some times with just the lap belt to help him develop sitting skills. The plan is that he will now learn to self-propel the chair so he can have some indepence when he is on his TPN and when he is too tired and wobbly to walk. This is great for him and he has already started playing at it. The arms come off so he can reach the wheels better. By learning to self-propel, he will also build up and strengthen some of the muscles in his chest and upper body. We hope that this will, eventually, help compensate for his weak and wobbly pelvis, at least when he is sitting, as the top of the body can help pull things straight.

The chair has had some interesting reactions. A prolonged "Ah" is something we have heard the most. This has come from groups of secondary school girls, groups of Mums in the playground, woman at bus stops...all of which has stopped their conversations to exclaim. It is strange and also something I have always found difficult to deal with. He is cute, he is sweet and he looks very cute in his new chair! Strangers remarking on this is fine. However, I am only too aware that the day will come when strangers no longer think that his wheelchair, wobbly walk and spasms when he is happy and excited are cute, least of all his display of agitation. In only hope the cute phase lasts as long as possible and perhaps by the time it is over he will have developed a personality strong enough personality to be more dominant than his physical differences - somehow I think he is well on his way to that!

Growing up!

Well, William is being quite the grown up boy this week. He started Sunday School on Sunday and, today, had his first afternoon at the Opportunity Playgroup. This is a playgoup for children with special needs and he will get speech and language and occupational therapy input there, alongside the normal pre-school learning. He still has a lot to learn about the structure of these activities, such as sitting down with othe children to listen to a story etc. He'll get there though. He hasn't mixed with other children that much as, even when in hospital, gastro children are not allowed to mix freely with others on the ward as they are very susceptible to infection. He does play in the playroom in hospital but only when they know there are only surgical and other gastro patients in there - so not all that often sometimes! Sunday School is frustrating for William as he is on his TPN so has to stay strapped in his chair where other children are sitting on the carpet together. We could let him join in on the carpet but he would want to run around and it would make him so cross that he is on his TPN so can't run around freely. He is at the playgroup on Wednesday and Thursday afternoons so is free of the drip. He really enjoyed running around but was not yet organised enough in his behaviour to calm down and join in the activities. They will be working on that though! The girls were both really excited about William's big day at playgroup and came running out of school asking how it had all gone. It had been the talk of the day with their friends. It is lovely how supportive and encouraging they are towards their little brother.

Due to confusion in the day, we did not have the OT and physios today so William has a reprieve before we start bracing his pelvis. I hope the gastro team can change his gastrostomy before then as it is currently very big and cumbersome with the tube inserted through to deliver medicines below his stomach. There is a new, much smaller and neater one that combines both of these tubes into one. This will be much easier and more comfortable under the brace or support. The physio thought the appointment should have been tomorrow and there was no way we could have moved it. Everyone seemed to want William tomorrow morning - the incontinence nurse, portage worker, physio and OT and wheelchair services! I had to prioritise and put the others off. He will have a short portage session and then we will head off down to wheelchair services. This really is urgent with the poor posture he has in his buggy and the way it now uptips when he gets agitated and bangs his head around - always in busy places (as it is the business and over-stimulation that causes the agitation)!

So, tomorrow is another day of running around: school run to portage to wheelchair services to playgroup to schoorun to Hope and Ellie's swimming lesson then home for TPN!!! Well, at least it keeps me fit! Meanwhile, Paul's leg is healing but much more slowly than they thought so the frame will be on for at least 2 more months. At least he can start physio now so is getting more mobile around the house. It will be a very long time until all is back to normal though as he will have a cast when the frame eventually comes off. Mind you, it will be a walking one and below the knee so will be a HUGE improvement on the current situation.

I think we must be due a nice, calm 2007!!

Rediscovering a social life!

Hooray, due to the fact we were supposed to be spending this week in Great Ormond Street, I actually managed to find some time to get some solid hours of work done, rather than snatching opportunities here and there, and, even better, remembering that it is really nice to talk to friends and meet people!

I have to apologise for being really rubbish at updating the blog this week though so I am going to have to go back to this time last week again. Hope spent last Saturday at a sleep over party so Ellie had some time for "mummy time". This was very well timed as the funfair had arrived just down the road. Ellie and I had a great time on the simulater and twister, eating candifloss and hotdogs and watching a pretty impressive firework display. It is very rare that we have these opportunities for one-to-one time and we both really appreciate it. Hope are planning an evening together soon. That one will probably be a little more cultured as Hope's is currently reading her way through Shakespeare re-written as introductory stories and is very keen on seeing a play for herself. She is also desperate to see a West End musical so we'll have to see what we can do!

Sunday was a big day for William as he started Sunday school. This is the first formal group he has been a part of and it will take some time for everyone to get used to his needs, especially the frustration and agitation that can come when he is overwhelmed through not being given sufficient time to process each individual piece of information he needs to react to. I will be staying with him for the time being but we plan to train enough people in basic Hickman line safety and pump alarms etc so he can have a one to one volunteer and I can spend some weeks in church for the whole service. He really is becoming quite the grown up boy and starts at the "Opportunity Playgroup" this week for 2 afternoons a week. Again, I need to stay as there is no nurse on site but will be in a parents room rather than with him. It will be so good for him to mix and play with other children and he wil get his speech and language therapy and occupational therapy there too.



One thing he will relaly enjoy at nursery is art and craft - he loves painting and sticking. He was making a really funky frog on Monday and ended up giving himself a rather punky look. This did not wash out with baby wipe so William was quite a scene on the school run home. The girls were really disappointed that I washed it all out in the bath!

On Thursday, I met Jo. Jo's little boy, Daniel, sadly died of complications following a liver and bowl transplant. He was a gorgeous little boy and you can read more about him at http://www.makingitbetter.org.uk/ (I still haven't learned those hyperlinks!). Jo and I had chatted on the phone but had not met. We had a lovely lunch together and I quickly felt I was making a new very close friend. After taking Jo to the running shop to get her running shoes, oh yes, she is another who can testify to the addictiveness of beginning with this sport, I picked up the girls and rushed to swimming lessons. There I chatted with Mechelle, another Mum I have met through her daughter and William having the same buggy. it is amazing what a close bond is struck up very quickly when two Mums, who have children with similar medical or special needs, open up and share their experiences, heartaches, hope and fears. Mechelle is moving up to Scotland today but we will stay in touch and saying goodbye was saying goodbye to a friend, even though we only met a couple of weeks ago. Later that evening Barbara, a friend fomr church came round for a chat. It was an amazing day as it has been ages since I have spent so long talking to friends. When things are very hectic and stressful, I am so tired when I finally finish everything that phoning a friend for a chat or to arrange to meet seems just too much. I really must make more effort though as it is so important. Paul also managed to hobble out (and fall over in spectacular fashion!) with his friends on Thursday. I'll let him tell you all about that on his blog (linked on this page). I did remark on the trend that seems to be emerging when he has a night out...



Today, we decided to make the best of the sunshine (between the showers) and met Jo and her son Alex at Crystal Palace Park. Hope had capsized her dingy 5 times today as she has progressed to the "Topper" which is a bit harder to control than the "Opy" she has sailed up to now. The poor thing was drenched and her face was a picture when I told her of the plans that had been made whilst she was on the lake. Even her spare clothes could have been rung out. A quick trip to a charity shop en route soon had her comfy again without breaking the bank! She will be using wet suits from now on... It was really nice to chat with Jo some more and the children had a great time. Last time William played on these swings he was on oxygen so it was lovely to see how far he has come. He had a great time walking around (with me running after him to steer him away from the swings and roundabouts). The girls held his hadn as we walked to the swings and it was so lovely to see them together. Ellie adored Alex and really enjoyed playing with him. I did get a couple of comments from other Mums about Williams unique little walking style. Both were very supportive and encouraging though as we watched William fall down adn pick himself up and wiggle around some more.

Next week is another busy one with the physio and occupational therapist coming round to see how we can brace his pelvis to make it more secure. We also have to sort out his buggy/wheelchair as he continues to slump in the current one but, more worrying, is that he is now tipping it back when he gets agitated, especially when he has his TPN on the back as the bag is pretty heavy. We have a couple of other appointments and William starts the playgroup so we have a new routine to get used to on Wednesday and Thursday.

Well, this has turned out to be a very long entry so thank-you and well done if you are still with me! There is a lot more I could have said too. I will be much better organised next week and will blog more as we go...

Another hectic week!

Well, it has been another crazy, hectic week - hence the first post since Sunday! On Monday, we went back to Chelsea and Westminster to have William's jejunal tube reinserted. This turned out to be particularly tricky as his stomach was well and truely refusing to let anything through (the huge amount of gastric aspirate pouring out of his gastrostomy was testimy to that!). The tube just would not go through the stomach into the jejenum. At one point it ended up folding back on itself right up into his oesophogus - the poor thing was so distressed and poor Grant, out gastro specialist nurse, was really upset at how difficult it was being for William. Eventually, we got it in place. We then rushed home to get Hope to her first secondary school open evening - for once William's TPN and drugs had to be done late when I got back! This was a lovely school and Hope's favourite - the whole issue of school applications and selections will, doubtlesly, form a topic for a blog entry later in the week!

On Tuesday William's CHASE nurse came round for a few hours so I got my first day off TPN since July - hooray!! This was great timing as Hope and I were off to another secondary school.

On Wednesday morning I went to an introductory session for Makaton sign language. This system of learning signs with language is really helping William's development. He only knows a few signs so far but these are helping him to learn to express things such as "please" to ask for something and "more". I am trying to learn enough to sign and speak to him as much as possible to help his language development.



William's physio came round on Thursday to bring William's new Piedro boots. They are absolutely great and look like trendy Timberlands. They help his walking a little bit but he needs a lumber support to help stabilise his pelvis. The physio and OT are coming on a joint visit to fit this in a couple of weeks. We also had our Portage session and began the lengthy task of assessing what he can and can't do in order to tailor his programme. Today, the OT came with his new chair. This is also great as it supports him really well. We are hoping to be able to do some work to get his hands working together more now he is better supported. We may have to try hand splints to stop his fingers bending back too much. He does need a wheelchair with similar trunk as he still has a tendency to fold in half in his buggy. We will sort all this out in the next few weeks but we really are getting there with his equipment and therapeutic needs.

We were all set to go into GOSH on Monday with transport booked, TPN arranged to be delivered there, Paul's Mum ready to look after the mechano leg and children...until 6.00 this evening when the registrar called to cancel his admission again! Apparently, the only doctor who can do the test he needs is not there next week. We don't really understand why he was booked in then, or why it took unitl 6.00 the Friday before to realise the problem as we had the letter a month ago and phoned several times to clarify information. Apparently, the doctor we need has full lists until the new year so Wiliam won't be going in this year! The annoying thing is that we have a lovely new integratged gastrostomy and jejenostomy we were hoping would be fitted while he was having another procedure. This would have been so much more comfortable for him and he wouldn't need to go through the jej tube being reinserted so regularly. It is also very necessary for him to have one, neat tube to fit with his pelvic support. I am hoping Chelsea and Westminster will be able to fit him in to have the tube changed soon. Oh well, at least next week is a calm week though as I have cancelled everything thinking we would be in GOSH!

Meeting of Angels

Well, we got through the week with nothing worse than a bit of extra weariness and tension in the inevitable arguments between Paul and myself during these challenging times. William went to see his gastro consultant on Friday. It was a bit of a hard appointment as I could tell he was noticing William's physical and cognitive limitations more. Mind you, William does have a tendency to retreat into "William land" staring up at the lights and shaking his head around to see the patterns it makes or, worse, get very agitated and bang his head on his pushchair when he is a) somewhere unfamiliar or b) over stimulated. A busy paediatric waiting room is both so they don't really see the best of him! We are fast learning that William can repond very well to things but needs time to process what he is experiencing and then form his repsonse. Hence, he will say goodbye to someone when they are already half way up the street and said goodbye to him several minutes ago. This is fine when he has one task and is given time and space to process it but when he is bombarded by several things such as several things to see, hear, touch...all at once, the time and space he needs to preocess each individual task gets into one huge busy Picadilly Circus style jam and he either retreats or gets very agitated. We have also found he gets very agitated if he his expectations change. We were walking home from taking Hope to the sailing lake on Saturday morning and walked past the tram stop we use to go home from school sometimes. It took him a long time to stop banging and shouting, much to my embarassment in the Co-op! This is, apparently, common in this kind of syndrome and due to problems in the neural connections so everything takes that little bit longer to travel and, in some cases, such as his intestines and part of his pelvis and feet, doesn't happen at all. As I have said before, time will tell what he is able and unable to do.

Unfortunately, we were unable to get his jej tube in as our gastro specialist nurse, the only man it seems able to do it in the entire world, was off sick. I am glad though as I would rather we wait until tomorrow than have a doctor think he/she can do it, only to put him through hours of pain and discomfort and still leave with no tube - this has happened before! The good thing about this was we had some time to pop down the road to the Brompton and introduce my little angel to THE Angel...

William was slightly shy around the tubes and drains that poor Emily is on at the moment but soon settled down into his usual sociable and entertaining self. Clearly Emily's room was much more calming than the clinic. It was lovely to see Emily again and introduce her to William. We tried to get some pictures, taken by Em's lovely friend. William eventually turned round but Em and I were so busy encouraging him to look at the camera that we forgot to do so ourselves! He was in very wriggly mood as he had just come off his TPN drip so wasn't really up for being held down for a photo.

This week is going to be just as mad, if not more so! We are hoping to get William's new buggy/wheelchair assessment in before GOSH next week. We also hope the physio will come with his Piedro boots and to discuss his pelvic bracing. He has portage (pre-school education support) and I have a half day Makaton (sign language) course. Tomorrow, we have to go back to Chelsea and Westminster to have his jej tube in. This would all be hectic but just about managable, however, on top of this Hope and I have 3 secondary schools to see in the evenings. So, there will be much rushing between William's stuff in the day to Hope's evening visits, with TPN and IV drugs to fit inbetween! Tomorrow is the worst as we are at the hospital in the late afternoon, an hour trip home, TPN and drugs to do and a school to get to for 7!!! I think I really do need to morph into Wonder Woman to get all that done on time - maybe I should practise that spin!!!

MRI Madness

Today has been a day off the week of mass medical appointments. However, it was just as busy as I caught up with work and housework. William had his MRI brain scan yesterday and what a palava that was! His jej tube was removed on Tuesday and I had already highlighted the fact that he would be unable to take oral sedation and, even if the tube was there, it is unlikely he would absorb it anyway. His consultant had planned to use sedation that can be absorbed through the mouth. However, no-one else knew of the plan! Everyone was nervous as his notes include a recent sleep study showing desaturations. This, together with the fact no-one had given the form of sedation I was describing, led the nurse on the day ward and the radiographer to conclude that William was not compatable with MRI at our local hospital. I was so frustrated as his tube had been removed specially and putting it back will involve at least an hour, nearer 2, of unpleasantness and discomfort for him. The radiographer said he was going to refuse the procedure and write to the consultant. At this point, I insisted that he speak to him to see if the stuation could be resolved. His consultant said to the nurse he didn't know where the concern about desats came from, I overheard her tell him on the phone this was from a letter he had written to William's gastroenterologist and read the quote to him. This was more than mildly amusing! In the end, they agreed to do it if the consultant gave the sedation and remained with William throughout. So...he came and gave the sedation. William became a little wobbly but no sleep...so he gave more...still awake...and more...yep, you guessed! Eventually we decided that the sedation was not working (surprise surpise!) He probably absorbed some through the mouth but did swallow some so it looks like not enough was absorbed to actually make him sleep, despite 3 doses! He was fighting the sleepiness he did feel. So, I had to get into a gown and go with him into the scanner. This was most uncomfortable and claustrophobic as there was barely space for him, let alone me lying beside him with my head on his chest and my arms cramped up with one stroking his face and the other up against the edge of the machine. We whiled away the time singing to immitate the noises it made. Surfice to say, the images were not great and the whole thing may have to be repeated...under IV sedation at Chelsea and Westminster of GOSH!

Since the scan William has leaked copious (even more than usual) amounts of aspirate from his stomach - so much so he has had to remain on free drainage to cope with it. He was really uncomfortable all afternoon yesterday. His gastro nurse specialist wonders if GOSH will try and give him a little feed into his gastrostomy to see what happens. It seems nothing much has changed and they will soon see what happens...William gives it all back again...with interest! His nurse also suggested that William may yet go to Birmingham for transplant assessment if GOSH agree this is the only solution to his intestinal failure. If so, they may well conclude that he is too complicated for transplant but at least he would get assessed individually and the pros and cons weighted for him, rather than a generalised decision. We will know more about the next stage after we have been to GOSH the week after next.

Wonderful CHASE!

We have just returned from a wonderfully relaxing weekend at CHASE at Christopher's Hospice. It really is the most amazing place, you feel yourself relax as soon as you hit the car park and are never ready to come home at the end of your stay! We left on Friday afternoon and that was far from relaxing. The CHASE minibus came to get us with a volunteer as Paul is still, clearly, unable to drive us anywhere and I am unable. I picked Hope and Ellie up from school early as the bus had to be back by 3.00. When we got back, the bus was already there and I was far from packed and ready! Normally, you could just throw things in a bag and pop into town for anything critical and forgotton. However, Hickman line flushes and IV giving sets don't tend to be available on the highstreet. Hence, such rushed packing is HUGELY stressful. The poor volunteer driver was trying his very best to calm the situation though and we were soon on our way.






Paul and I were able to relax together in the tranquil sensory garden while the children played far enough away, on the trampoline and swings, to maintain the peace. This was the first "quality time" we have had together since Paul's accident on July 12th. William did pop over with his nurse from time to time. There is a lovely iron tree water feature that drips away as if in a light summer shower. William became fasinated with this.
When we were not in relaxing mode we had great fun in the pool together (Paul had to remain dry side but did take a few pictures) and William and Hope had great fun in the music corner. Ellie just loved having lots of baby dolls and pushchairs and fancy dress to hereselt in a big enough space to play lots of make believe and charm the nurses into joining in as only Ellie can. We did find time to make a paper bead necklace together in the art room. It's funny, for all their craving of William free "Mummy time", when they get the chance, both girls would much rather play with the nurses - after all, Mummy is always there isn't she, even if she is a bit busy. However, CHASE nurses have to be enjoyed when you can! I think this was particularly so this time as William has been home (give or take a couple of weeks here and there for line infections) for such a long time now and the girls aren't feeling so Mummy starved. I did offer to take them to Guildford Castle as it was free for British Heritage Day but who wants a castle when you can have baby dolls and a big garden and corridoors to push them around, lots of nurses to charm and a corner full of musical instruments and a magic piano that lights up to show you how to play the classics!





We have never been to Christopher's at a weekend before. We are usually the only family there, with the other children alone while parents take respite on holidays. It was really good to share it with other families. it was lovely to sit and eat meals together and share experiences. It was also interesting to see how each family made the place their own and got what they needed from it in different ways and without getting in the way of each other. Sometimes, for us, this is all about the girls and I having fun and bouncing on the trampoline etc. There was plenty of that this time but the main need was for Paul and I to have time together as there is precious little of that by the time I have done everything William and the girls need, fetched and carried for Paul, cooked meals, cleaned up...etc... The only thing I didn't get was a break from the TPN. This is so specialised that there are not yet enough staff trained to be able to do this when we are there.

Today was a slam back into reality as we kick of the busiest week so far for William. We had an opthamology appointment today which went every well, although we do need to get William in his glasses more (at the moment they are at the optician though as they were a casualty of the weekend!). Tomorrow we have Portage and Grant, out gastro nurse, to take out William's jej tube, Wednesday is the MRI and Friday clinic and a new jej tube. Thank goodness for Thursday!

Ministry of Funny Walks

Well, the school run major juggling act is so far so good! Yesterday, we even managed the mile long walk to school in the morning. The clue has been to leave William in the cot with books, dressed and ready to go, until the last minute and then put him straight into the buggy. The girls are enjoying the "Weetabix week" as in the advert so are having me dream up different toppings each morning. This has been greatly helped by the family organic box we are getting again. We have done plain with milk, apple, banana, yogurt. Tomorrow is strawberries. With William in the cot, the girls get a bit of "Mummy time" to discuss the day ahead too. Quality "Mummy time" is in very short supply at the moment and the girls, especially Hope, are feeling it. At least they will get some at the hospice at the weekend while William is being looked after.

Ellie is very excited about being in the juniors now. The girls are at the same school at the moment and, today, the problems with that began to emerge with each running out of school telling tales of each other's faults in various playground squabbles and fallouts. They were swiftly told to keep their noses out of each other's business. Let's hope the novelty soon wears off. I'm sure it will as Hope, in year 6, will soon tire of year 3 playground politics.

Meanwhile, William had his orthotic appointment today. He had is walking analysed and, as in the sitting posture, it seems the main problem is hyperflexibility and low muscle tone, globally throughout his body but particularly in his lumbar and pelvic regions. They are going to give him Piedro Boots to help him feel more stable and supports for his lumber and pelvic regions. He has a very strange, wobbly gait and walks in his toes a lot, partly because he has a foot deformity (ped cuvus?) but mainly because he has developed this is a strategy to make his legs feel stronger. He is such a little fighter. Many children woud just not walk if they felt wobbly and unsafe but he is developing ways to make himself feel a bit better - all be it ineffective in some ways as he keeps falling but the way he walks is very funny. However, this is causing his achilles tendons to tighten. He falls so much when he is tired we can only let him walk for short periods and may be advised to use a soft crash helmet when he is particularly wobbly. He managed several falls, including a spectacular thump, putting his teeth through his lip, while being assessed.

Still, he gets around as this picture of him setting the world to rights with his special friend, Adam, shows.

While Mummy was away running and making friends...

... the children were at the CHASE family fun day with Paul's Mum and Dad.




They had a fantastic time. The highlight for Ellie was meeting up again with her special friend who came with us to Legoland and has played with Ellie at the sibling day. They really are like two peas in a pod. Hope's highlight was the chocolate fountain! As for William, well, there was a miniture steam train so need I say more. He enjoyed riding on it and got very upset when he was removed from watching it, instead making a beeline back at every opportunity. He also met Piu, a CBEEBIES presenter who used to be Poo from the Teletubbies. I don't think he recognised her but he has a lovely signed photo for his collection.

Following such an exciting day yesterday, I found myself registering for Losely 10K, a run in aid of CHASE so my entry fee will go there which is great. I have absolutely no idea if I can do that but have 2 months to find out, as it is on November 5th. It is far too soon to do another sponsored event but if anyone reading this didn't get round to sponsoring me for the Hydro Active you can still use the Justgiving page (www.justgiving.com/williammilne - I really must learn how to do those hyer links) through October. Any little extra helps make smiley faces like those in the pictures above. I also decided today to join a running club. Well, if I am going to keep at this why do it in the cold and dark alone when I can finish in the clubhouse with a nice glass of wine, making new friends. I am realistic though and know I can only do this on tip top days when my lungs are really behving themselves and not at all tight and twitchy. I am so inspired by what Emily achieved yesterday with her tiny lungs and know I can make more of mine, cautiously though. I also find running such an amazing way to get rid of adrenaline caused by stress. After all, it is there for fight or flight! It also helps me think things through. Whether or not it is at all possible to keep going through the winter coughs and colds I don't know - time will tell.

Another big piece of news today is William is finally going into Great Ormond Street for 5 days on 25th September. This is not for the big tests he was due for but it will get him on their system which is a start.

Well, tomorrow is back to school. I don't know how I will manage William and Paul and school run. That will, no doubt, feature on tomorrow's blog (see Charlie - back to normal service here!). William has speech and language therapy tomorrow and fittings for his boots and foot supports on Wednesday. We are off to CHASE on Friday for a weekend of R and R - can't wait! This is especially good timing as next week is a crazy one with Opthamology on Monday, Grant, the gastro specialty nurse coming on Tuesday to take his jej-tube out (as it contains metal, not good in an MRI scanner) brain MRI scan Wednesday and Chelsea and Westminster for clinic and insertion of a new jej-tube on Friday!