The Island Of Sodor

Wills had a fantastic day today, well we all did. As followers of this blog will know, William absolutely adores Thomas the Tank Engine. It is what keeps him going, it really is. When he is unwell, he watches the DVDs and reads his books and pushing engines around on a table calms him down better than anything. Of course, he plays with his Thomas things when he is feeling well too but when he is ill, it is really all he wants (apart from blankie of course!)

So, a day out at The Bluebell Railway Thomas Day Out is William's dream come true! We told him he we were taking him to The Island Of Sodor and he really believes that he has been there today. We saw Thomas and Percy, Diesel and the Troublesome Trucks. Stepney is resident at The Bluebell Railway as, of course, he is the Bluebell Engine so we saw him and had a ride on a train he was pulling. William is now a proud member of the Stepney Club so we will be having a good few trips to the Bluebell Railway for club specials in the years to come. We said hello to Thomas and climbed in with his driver to blow his whistle. We watched Thomas and Percy arrive at the station and then watched Percy shunt the naughty Troublesome Trucks around. We also saw another resident engine, Fenchurch. He is not a Thomas engine but William adopted him as one (he had a face afterall) and was thrilled to ride on carriages he was pulling. Other engines had faces on to look like characters so we also saw Henry, Donald and Murdoch. The Fat Controller was also around to say hello to the children (although he seemed to have lost a bit of weight!) All in all, it was a fantastic day, despite the rain, and made for very excited children, especially Wills.

We were wondering if we would make it at all today as it has been a bit of an eventful week for Wills. He has started draining really nasty liquid from his jejenal tube. Most of it is faecel matter that should be draining elsewhere but is not doing so very effectively at the moment. This may be due to adhesions or partial obstruction caused by infections or may just be because his intestines have slowed down so much. Either way, it is now time for Wills to have surgery to sort things out and make him more comfortable. This is still a tricky balance and William's surgeon is still hopeful he may be a suitable candidate for a transplant at some time, unless it is confirmed that his underlying condition is progressive. In any case, things change and the contraindications for transplant may alter as more research is done and more successful transplants carried out. So, even if he is ruled out now, he may be included again in the future. This is tricky because surgery that could be done to make him more comfortable now may hinder the success of fa uture transplant. It is very hard to decide what is best for him when we really are working in the dark with no clear diagnosis. There are a couple of options for surgery now. One is a staight forward illeostomy, the least risky but may not be the most effective for Wills. Another is to make a higher stoma. This would drain very well but would mean there would be very little remaining small bowel, making him "short gut" and so, writing off any function that may remain in his small bowel. William will have some further x-rays and barium studies over the next few weeks before a discussion with his consultant and surgeon to decide what to do. In the meantime, we are draining all the nasty stuff through two drains, from his jejenum and stomach.

William has been struggling with the heat so is back on 20 hours TPN with only 4 hours free from a 2 ft long drip tube. This is very hard for him as he wants to be active like other children, even if it is in his own wobbly way! We are hoping he will sooon get a powered wheelchair to give him more independence with he is on his line, and when he is too tired and wobbly to walk.

We had just got back from the day at the hospital on Friday when Wills spiked a high temperature, making the trip to see Thomas look very unlikely. Luckily, it seems that was due to dehydration (before going back to 20 hours on the TPN) and, perhaps, a normal virus.

Hope had her birthday last week and enjoyed a very girly sleep over. I really didn't have much to do with it - apart fomr providing the tea, Mum really needs to keep at arms length from her and her friends girly sleep over behaviour now! It is sad really, Hope and Ellie have missed a lot of Mummy time since William was born. Hope has had most of her parties, and was 8 when William was born so growing out of big parties. Wills was born the day after Ellie'e 5th birthday so she missed out that year. We have managed to do something for her each year but it has always been around what has been going on and, usually, with Wills and I in hospital. She has had a couple of birthdays hauling her presents up to open on the ward. This year, she is having an early party next weekend so her friends can all come before the term ends and to make sure she has one before Wills goes in for any surgery that may get scheduled during the summer. We looked at a party catelogue and she really has grown out of the fairy parties etc. That is a bit sad really as I fancied one more pink and pretty party. We are going for Pirates of the Carribean and are really going to town on it with treasure hunts and palm trees and a lovely Elizabeth wedding dress for Ellie to wear. Next year, she wants a sleep over too so it looks like this will be the swan song for home made childrens birthday parties for the girls. Once again, we are keeping everything crossed that Wills stays well and home for another week.

Some photos as promised!

As promised, here are some pictures of things that I really should have blogged more about! The first is Wills at the firestation open day last week. This was after I had just run a 10 mile race on a very hot day so I was somewhat tired and chesty but we all had a great time, although it was a bit noisy and busy for me as I really wanted a hot bath and a sleep!

The next one is Wills enjoying story time with his new friends at the picnic yesterday.

The girls also made new friends but I hardly saw them as they were too busy enjoying the playground we were in!

A few weeks ago, Wills, Paul and I went to the special "twighlight opening" of Marwell Zoo with, organised by the hospice. Hope and Ellie were away so, once again, absent from the pics. William enjoyed saying hello to the giraffes, cuddling all the furry animals wondering around to meet and greet the children and, best of all, a ride on the minature steam train! We are going to see the real Thomas and friends in a few weeks. I think he will burst!

Meanwhile, Hope and Ellie are Joseph mad. We are SO happy Lee won the role. We are huge Lee fans. I bought some tickets for them as they really deserve a special treat and a really special day with Mum! That made it all the more exciting for us and we were on the edge of our seats. We screamed when we heard. I'm glad I took the gamble as it is sold out today! The girls have been listening to the music all day and have been on all the relevant websites. Even William is singing along to "Jacob and Sons" and "Colours" (as he calls it). We aren't going until July 26th so the CD is going to get a good few plays I think!

Sorry!!!

I am so sorry it has been such a long time since I last blogged (thanks to Charlie for texting me today to give me a kick up the backside!)

All is well. We have just been so so busy. William has been well over the last few weeks. There are some problems (as usual!), mainly with the amount of pain he is in due to the compression and fluid build up he has in his intestines at the moment. We are trying suppositries and medication at the moment but there will be further discussions in a couple of weeks as to whether or not he should have the illeostomy. William's consultants are waiting for some advice from the Birmingham team on this one.

Meanwhile, William's hair has gone for analysis to see if he has a very rare (so rare there really is literally only a handful of known cases worldwide) genetic condition called "trico-hepatic-enteric syndrome". William's case for statement for special educational needs is heard next week so there have been loads of appointments over the last few weeks so everyone can update their reports. As William is currently well, we have been able to judge his progress, as sometimes it is hard to tell if deterioration and symptoms are just due to him being so unwell. Cognitively, William is doing really well and developing every day. His physical development is not going so well. He had a detailed seating assessment this week with his wheelchair assessor and occupational therapist. His muscle tone and reflexes have deteriorated throughout his body but particularly in his pelvis and trunk. This really is William's problem area (of course his bladder that he seems to lack control of, stomach and intestines are in this area too). He presents a huge problem as he can function well, he is a fiesty, determined and independent little soul but he really can't sit very well without a lot of support. His spine is now bending in a curve and to one side and, if this is not supported, it will soon fuse. So, after much discussion, it was decided that William should have a powered wheelchair to use when he is on his TPN (which is probably going to have to increase to 20 hours a day) and when he gets too tired and wobbly to walk with his walker. This way, he can have independence and be fully supported while doing so. He is not a usual case (when is he ever!) so we just need to find out if Croydon will fund this. If not, we will be helped to acquire the chair from one of the charities that exist to purchase these chairs for children. A 3 year old driving a powered vehicle is an amusing thought. I hope they can go very very slowly!! We were at a park today and his walker was very much envied by many of the children so I'm sure his "magic charlie chair" will be even more so!

We had a lovely day today, having a picnic with fellow "Fetchies" from the running website I am a member of. It was so lovely to meet people that I chat to online so frequently. I am really looking forward to catching up with others of you again at the Hydro Active in September, although I hope I get the chance to see people before then too! William has been home for a good few weeks now and it is great to think about making plans. Of course, the bubble could burst at any moment, especially as we are about to do some tests to look at his fluid balance and blood sugar levels at home in the next week or so, and there is the whole illeostomy issue.

Hope and Ellie are great too. At the moment, they are resting in bed before coming down to watch the final sing off in "Any Dream Will Do" and, hopefully, watch Lee become Joseph. There is much excitement among the Milne girls about him and Ellie even sent him a lovely good luck card! Hope is preparing for her own show at the moment. She is the narrator in their Year 6 show, "The Rocky Monster Show" She has a lot to do so is very excited about it.

Well, I hope that has updated everyone a bit. I am sorry it has not all been in more detail as things have been happening. I will post more frequently! The main thing has been trying to catch up with work while William is well and my mind is not so preoccupied with him. I have loads of pictures to share with you too and will download and upload them for you tomorrow so do come and have a look.