James Toseland . .

I met James Toseland today. Every Easter 400 motorbikes ride up past the hospital and then park up in the park for us all to go and look at. James Toseland leads them all. Afterwards James and Katie Melua come around each ward of the hospital handing out Easter eggs to us. He remembered me from last year. He commented on how ill I was back then and how much better I look now. He also said I've grown a lot too. I liked his motorbike gear, I liked the feel of it, it is made from kangaroo skin. He is such a lovely guy and its nice how he remembered me to. He had lots if time for us all, took his time speaking to us and spending time with everybody. Ellie and Taylor liked meeting him and got a photo and autograph from him. Xx

Chocolate Mountain . .

Had a lovely chilled out day today. Was in pain this morning and needed my extra pain relief but once it kicked in i was a lot more settled. Had nice cuddles with mummy this morning whilst we watched a film. Dee Dee, Ellie and Taylor came down for the day. We didn't have any plans to go out because the hour out yesterday really took if out of me. Mummy, Dee Dee and my sisters nipped to tesco whilst Gill sat with me but they wasn't gone long. They got me some new Lego to play with whilst they made Easter treats for my ladies. They had a mountain of chocolate on the floor to work with. They wouldn't let me look at any because I've learnt how to open wrappers!! It took an hour and half to make it but it looked really good. It was a chocolate bouquet, well 2 actually, it was made with over 50 chocolate bars and some haribo jellies. The nurses loved it and were taking pictures of them. After all that it was time for my bag change and night meds. Dee Dee had gone downstairs to pick the curry up from main entrance. We had a party in my room with curry and Ant and Dec, it was fun. Dee Dee and the girls had to go because it was getting late and needed to get back to lack their bags. They're staying in a hotel for 2 nights from tomorrow so that will be nice. Mummy has also planned a special treat for us for tomorrow, not sure where because she won't tells us. We're all looking forward to it though. Best go because clocks go forward so need to go to bed earlier to make sure I get all my sleep.

Past Two Days . .

Yesterday we tried time off my TPN again, after just 30 mins my blood sugar had dropped so I had to have a glucose bolus and put back on to my TPN. The issue with my sugars could either be an infection brewing or a deterioration in my liver. Until I decide to show which one it is its a waiting game. My consultant said that over Easter I am going to stay on my TPN all the time and then we'll discuss things again next week. I'm still on oxygen until I can behave myself. I'm looking pale today and keep getting upset at times too. Dee Dee, daddy and the girls came down to see us. They had made cakes for the nurses, especially phil. He loves the cakes he gets made. Had a bit of time with daddy whilst the girls went shopping. I also went in the snoozalin with Gill but whilst in there my TPN disconnected and my line started bleeding back so I had to come back to my bed to get sorted out. Everybody decided to have a sleep over last night so we had a pizza party in my room. It was good fun.

Mummy stayed in a hotel with Dee Dee and my sisters last night, they came back this morning to me. Had the, all in my bed with me!! This afternoon we went I to town on the bus, I liked the bus. I wasn't happy with the shopping part but I enjoyed sitting in costa coffee. We got some free cakes for the nurses too :). I like to treat my ladies. After costa we went back up to the town centre, I went on the dodgems. Ellie and Taylor went in one car with Ellie driving and me and daddy went in another. I loved it! It was so much fun and laughed the whole time. When it had finished we headed back to catch the bus because it was getting colder outside. We got my ball pool out when we got back to my bed. My sisters had fun playing in it with me for a while. They've had to go home now, they didn't want to go and got upset. Dee Dee said that if the girls are good then they'll be coming again tomorrow. I'm getting a bit sleepy now so I'm going to have a lie down with my quilt and watch the panto on cbeebies.

Recovering From Yesterday . .

Yesterday really knocked me back. Last night I spent the evening just laying down with my quilt and watching tv. Not long after my meds I fell to sleep but was restless and breathing fast. Mummy checked my oxygen levels and they were low so had to go into oxygen for the night. Once I was in it I slept a lot better up until 7.15 this morning but was still breathing faster than usual. I've had to stay in oxygen today with my breathing being fast and I was nasal flaring too. I also needed some of my extra pain relief this morning because I was in quite a bit of discomfort. I've still being laying down a lot on and off throughout the day and getting upset at times too. My consultant came to see us this morning to discuss what had happened yesterday whilst on my time off TPN. He isn't sure what is causing my sugars to be an issue whilst I'm out and about, he said it could be my liver and it worse than what we thought. The other possibility is that I'm brewing something and I never show it straight away so we'll just have to wait and see. He said that would also cause me to need a liver transplant. He wanted me to have a good day today so not to have time off and to try again tomorrow. He said today I'm still recovering from the hypoglycaemia so to just continue as we are and see how things go. He also wants mummy to try taking me out again after the weekend but not give me time off, it's to see how low my sugars go whilst I'm out and on TPN. If they are an issue again then mummy will have to give me a sugar bolus (70 mls of glucose straight into my line) and get me back straight away. Hopefully things will be better next time.

Mummy got my ball pool out for me today but I wasn't up to it and only managed 30 minutes before I'd had enough and wanted to lay down. Fiona and Laura took me into the snoozalin today, when I got back I was tired so had another lay down. I'm just in my bed now with cbeebies on and playing with bits of Lego, various cards and some play eggs that I love!

Mummy told me about three very thoughtful and special girls today, Chloe, Aimee and Skyla. They got their granddad to write on my Facebook page because they want to give their Easter money to me to help get any things that I need at home. You are very thoughtful and I am honoured that you would give your Easter money up to help me. Thank you so much xxx

Time Off Whilst Out = Unsuccessful . .

Past couple of days I've not quite been as happy as I was. I've been a bit lethargic and quieter. Mummy knows there's something not right when I just wants to lay with my quilt. You know me though, I'm not showing what's wrong in my bloods or in myself just yet.
Today me and mummy went to Meadowhall to see how things would go with my time off TPN whilst I was out my bed. It didn't go well. Even whilst I was on my TPN my sugars had dropped but mummy carried on with doing the change in bags to time off TPN and onto glucose. After just 30 minutes my sugars had dropped a lot lower so we had to finish off and head back to the car. On the journey back, it's only a 15 minute journey, we had to pull over to check my levels again. Still low! I was very pale, breathing faster and my breathing was noisy too. I had also gone very cold. It took us a lot longer than usual to get back because mummy had to keep checking my sugars. As soon as we got into my room phil said to switch back to TPN and check things again. My colour started to come back but my breathing and coldness took a lot longer to settle. In the end it took up until half 7 for things to be stable. Not good. We're not sure what happens now, if doctors will want us to try again or if they're just going to tell us it's not worth it. We'll just have to wait until ward round tomorrow.

Mummy did 'a day in my life' on my facebook page today. It's all pictures of the things I go through everyday. Some days are worse, today wasn't too bad. It's a bit difficult to put it on here but I'll have a word with mummy and see if we can figure it out tomorrow. My facebook page is Harvey's journey - lets get his story seen. Feel free to take a look and like my page, it's another way of hopefully getting my story seen and making awareness too of my condition.

One good thing did come out of today though, mummy got me a ball pool from meadowhall and I love it! Just need more balls for it because 2 bags has only just covered the bottom.

Parachute Jump . .

My Auntie Dee Dee is doing a skydive with 9 other people to raise money for Sheffield Children's Hospital to thank them for all they do to care for myself and all the other poorly children that come here. Without money they can't improve there facilities to offer the best care for their patients. It really is for a good cause so please be kind and remember a donation of even £1 adds up and can do something special.
To donate please visit www.justgiving.com/Vikki-Marshall

Thank you everybody
Xxxx

A Weekend Snowed In . .

So, due to the strange weather we have been snowed in all weekend!! It's been ok though, it's just been me and my mummy. Yesterday we watched Richie Rich, I liked it. I also went in the snoozalin room for an hour and then just played and had cuddles. My consultant was working this weekend and came to see me yesterday, he said I'm looking good and also liked my hair cut!! He happy with the way things are at the minute. My time off TPN has been going ok too. Maybe they'll increase it to 4 hours tomorrow. I was really happy and laughing at everything yesterday. Was being cheeky at bed time and tried pushing my luck but tiredness took over and I fell to sleep!
Today has been pretty much the same. Didn't start as well this morning though. I got woke up so I was a bit grumpy for the first few hours. Once I had been weighed and changed mummy set things up on the floor and put my bed down so I could get out and play for a while. I also spend an hour on the iPad! The home button is my favourite!! Mummy got me back in my bed at 1 because it was time for my meds, I wasn't too pleased about that. Once I'd had them though Fiona came for me to go in the snoozalin with Sarah too. I had fun in there playing with toy eggs. I started getting tired so climbed to Fiona to bring me back to bed. Since then me and mummy have been playing with Lego and the toy eggs. I also had a route through mummy's purse for a while. Now I'm sat watching tv and playing with my Lego in between. Mummy's been looking at ball pools for me at home. She said they're expensive though. Because I'm nearly 7 we have been looking at the soft sensory ones. There's some really good ones! I think we should turn the living room into a sensory room but obviously we'd have to keep the tv!!
Sorry it's short but I'm a bit tired and want to have a lie down. Speak soon.

Antibiotics Again . .

Yesterday I got started on antibiotics again because my weekly urine sample grew a bug called klebsiella. It's a nasty bug that is hard to treat sometimes as its resistant to a lot of antibiotics. I've had to do a repeat urine sample to be tested again. It was also agreed to up my time off TPN to 3 hours now. I did ok, my sugars dropped low at one point but came back up and remained stable afterwards. Mummy's been spending loads of time on the iPad looking at beds and equipment for me so whilst she was doing that I raided her purse. My Bupa nurse came yesterday to asses mummy doing my TPN, he stood quite close to my bed at one point so I went straight into his pocket and pulled out a £10 note and his blackberry!! He was laughing though so he saw the funny side. Some people can be funny though when mummy takes me out. Don't think they have a sense of humour!! I've had to have my stoma bag changed quite a few times since yesterday, my skin is really sore and broken down. Even water touching it is extremely painful. We have swabbed it to make sure there's nothing there that's causing the problems because it just seems to be getting worse and bleeds at times. I've done a bit of painting earlier, I did my hand and foot prints. I didn't like having the paint on my feet. I'm just waiting to go in the snoozlin now so thought I'd update you all. We're not sure about our plans for weekend because of the weather. My sister phoned earlier to see how I was and to see if she was coming here tomorrow, mummy had to tell her that it all depends on the weather. I hope it doesn't stop is from seeing them, it's been nice spending time with them and auntie dee dee and day of course!
Got to go, I've got to have my antibiotics now.

M.D.T Meeting . .

I slept quite well last night, woke early but in a good mood. Past few days mummy said I've been difficult and very demanding, I hadn't been sleeping well. This morning after being weighed I played with mummy's purse for a while and my wooden jigsaws. My teacher turned up earlier today so we could do some school work before the meeting. I enjoyed posting the balls through the tunnel. Daddy turned up not long after my teacher did, straight away I robbed him of his car key and found it fun to post that down the tunnel too! Michelle (my home nurse) came in to see me before my meeting too. That was a nice surprise. I haven't seen her for a while. It was nice to see her, somebody new to frisk anyway!! She couldn't believe how much I've grown since last time. I love my Michelle. The first time we met I showed her my love by hitting her on the head with my toy brush!! Good job she saw the funny side of it and that I wasn't being nasty. She knows me well anyway and loves the cheeky side haha.
Finally got my hair cut today and boy am I glad!! There's only so much of mummy straightening it that I can take!! Daddy tried gelling it too at weekend and that didn't go well either! I sat well whilst my lovely barber cut it. She's really nice when she cuts my hair. She lets me play with the combs and clippers too. It was good fun. Since getting my hair cut I've been very noisy and cheeky mummy said. It's because it's a weight lifted off my head! Did you see how long my hair was?! On the way back to Sheffield we stopped off at costa coffee. That's my sisters favourite place. I ended up spilling half a cup of coffee over my legs though so we had to leave. I'm ok though, I'm not burnt or anything. It was nice getting out for a bit. Been shouting at everybody since I got back. They've all been laughing at how loud I've been.

The MDT meeting today was to tie any loose strings in getting me home. Pretty much everything is in place. Mummy has to carry a few letters around with her incase anything happens whilst we're out. She's also going to have a checklist to follow as to when I need seeing by a doctor. Another letter is for doctors so they know what to do if I take ill and to tell them I need medical treatment straight away. I have to have blood tests and see my consultant every week until they know things are going ok and I'm stable at home. After that Michelle will do my bloods weekly at home. Michelle is going to look into a new bed for me too, one with high sides and padded. I also need to get another pump now to run my glucose. All other things are sorted and in place. My medical status is stable so as long as I remain that way nothing will hold things up.
I best get some sleep now, it's getting late. Night all x

My Letter And Presents From Lego . .

Thank you Samantha it was really kind of you to contact them as you know Lego is my favourite xx

Dee Dee's Birthday Weekend . .

Time off TPN has been going ok, my sugars have been low at times but not low enough to have to take further action. Mummy said she has a few questions she needs to ask but hopefully we will continue to have time off to help my liver. Since trying dioralyte earlier in the week it's really upset things, I've been in discomfort and agitated at times too. I'm due to start my next course of decontamination so hopefully that will help things.

Well, it has been Dee Dee's birthday weekend and what a bust time we've had. On Saturday daddy, dee dee, Ellie and Taylor came. I helped dee dee open her birthday presents. We went to meadowhall to do a bit of shopping before I was due to have time off my TPN. I have to have regular blood sugars whilst I'm off so its best to be in my room during the 2 hours. After my time off had finished and I had had all my IV's we went out for a curry, April and Evie came too. It was fun, I enjoyed going up the waitress's dress and feeling her tights!! After we finished daddy took April and Evie home whilst the rest if us came back and sorted things out for bed. Daddy stayed with me for a sleepover and mummy, dee dee, Ellie and Taylor went to stay in a hotel. I had fun with daddy, I didn't want to go to sleep but eventually I gave in, so did daddy!!

Today I didn't wake up until around 8, after being weighed and dressed I had a play with my Lego, daddy's car key and watched tv whilst we waited for the women!! When they arrived mummy got my IV's ready whilst dee dee and daddy got me sorted in my chair to go out. First we went to Weatherspoons for some breakfast. There I kept going in a daze and looked unhappy so mummy checked my sugars but it was ok. Dee Dee needed to go get some new socks so we called at tesco. We didn't want her having smelly feet!! Eventually Dee Dee and my sisters finished shopping and we could set off to where daddy was taking us for a day out. We went to magna science museum. It was freezing inside. I wasn't sure about it for the first hour. My sisters really like it though and loved trying all the different things out. We went in an air room, saw a 'Big Bang Theory' demonstration whilst on the way to the fire room. From the fire room we went into the water room, well that was my favourite. I love water!! I had already pulled my shoes off so when mummy stopped near some water bucket I put my feet straight in, it was so much fun. I wanted to climb in but wasn't allowed. We got really wet in that room so we went into the bathroom to dry off a bit under the dryers. After that we headed to the earth room, I liked playing in the sand for a little while but then I got fed up. There wasn't really anything for me to do in that room. We were all cold and had been there for a few hours so we decided it was time to leave and get some tea. We went to Pizza Hut. That's my sisters favourite. The weekend went really quick, before we knew it it was time to get back because daddy, dee dee, Ellie and Taylor had to set off home.

Once they had gone mummy got my pyjamas on and sorted my bags out. Whilst mummy did my IV's I played with a few different bits and watched a bit of tv. I was getting tired, it's been a very busy weekend for me. It's been really nice spending time with my family, it's nice having them all together. Hope you had a lovely birthday weekend Dee Dee xxxx

Time Off TPN = Success . .

Had a good nights sleep last night. Needed a bit of oxygen at the start of the night but remained in air for the rest. Woke up a bit early this morning because it was noisy so I had some more sleeping medicine to help me settle back off. The day started for me at 8, straight away I had my Lego and cbeebies on. Whilst mummy was weighing me my teacher turned up so once I was dressed I did my school work for an hour. I enjoy my sessions with her. My consultant came to see us today, he decided to try time off TPN because dioralyte was unsuccessful. When home TPN is needed the doctors like to get you down to between 12-16 hours of TPN and the rest of the time off. We tried time off a while ago but my sugars are a big issue. Back then I managed 20 minutes off before my sugars dropped, now it happens in just 3 minutes!! I have always had constant TPN because of this. Long term constant TPN isn't good for you, it completely bypasses the digestive system which causes problems with your liver. I already have some degree of liver damage which my body is coping with at the minute. To try time off today in replace of my TPN I had a bag of glucose running instead for two hours. We wasn't sure how things would go. At first my sugars dropped but after an hour they had come back up. We had to check my sugars every half an hour for the 2 hours I was off TPN. My last sugar we did had dropped again but I was due to get connected up again away. Overall it was a SUCCESS!! We're not sure what the plan is with it yet but because I managed it today we will probably be told to continue over the weekend and see how things go. Only thing with doing this is the increased risk if line infection from accessing my line more. We've thought of ways around it though so if its decided to continue then we can make it work.
I went in the snoozalin today with Sarah and Charlotte. I had a good time. I've not done much today, just watched tv and played with a few different bits. Only 2 more sleeps until I see my family. Daddy, Dee Dee, Ellie and Taylor-Mae are coming to stay the night. It's Dee Dee's birthday this weekend so we are all spending the weekend together. It'll be lovely and we can't wait :)

Trial Of Dioralyte = Unsuccessful . .

Yesterday afternoon after a discussion with my consultant we decided to give dioralyte another go. If my fluid losses increased, i was in pain, my belly got distended or my chest was getting bad we had to stop. We started at 2.30pm at 2mls an hour. As you all know, 2mls an hour is an absolute minimum and is nothing to most but for me it was too much and my body couldn't handle it. About an hour or so after it started I was already uncomfortable and needed some of my stronger pain relief. Mummy wanted to try stick at it which is why I had the pain relief and carried on to see how things went. I settled down a bit after it kicked it but still wasn't quite right. Still hoping that things would settle down we carried out throughout the night. I had a good nights sleep and managed the night without needing oxygen for the third night running. I woke at about 6.15, my belly was slightly distended and again I was unsettled which got worse throughout the morning. I started getting a bit frustrated too. It's how I get across I'm not happy that nobody is sorting me out. Mid morning mummy and Clair made the decision to stop the dioralyte because it was causing pain and discomfort. Again I needed my strong pain relief this morning. Since its been stopped I've been a lot more settled and happier. Mummy really hoped that after having 6months bowel rest things would start working again but as of yet, it isn't. She asked my consultant yesterday if there's a possibility my bowel would start working again but he couldn't give a definite answer, he feels its unlikely because things deteriorated almost a year ago and attempts in the past to try feeds didn't work then either. He said there's room for further deterioration but doesn't feel it will improve. We don't know for sure though, nobody can answer that, In fact nobody and answer most question because nobody understands my condition or knows what it is. He also said that after receiving the report from Birmingham children's hospital it's all irrelevant because since meeting the consultant there I have had 2 more lines put in and got extremely poorly back in December/January. It has now been agreed that if I have 1 more confirmed line infection then I will be going over to Birmingham for a small bowel transplant assessment with the possibility of me needing a liver transplant too. I already have a degree of liver damage which probably won't recover now and usually if you need a small bowel they do biopsies of your liver anyway to see how things are.
Charlotte came to play with me for an hour this morning and dizzy Lizzy kept popping her head in too!! They're a right pair them two when they're together. They had mummy in stitches!! Love my crazy ladies. Salena came in to see me this morning too, she always makes sure she sees me when she isn't looking after me. She's another one of my lovely ladies. Got Clair today, she lets me have her badge to play with and yesterday I had lovely cuddles with her. Just got back from snoozlin, dizzy Lizzy and Charlotte took me. I had a great time and did lots of standing. Lauren popped in to see me and I nicked her glasses!! I was too fast for her haha. Me and mummy were playing earlier, I has my vest on my head and mummy had my trousers on hers. It was funny and I spent the whole time laughing. We also watched a bit of Charlie and the chocolate factory together.
I'm going to get back to playing with my wooden jigsaws now.

A Few More Shots From Our Lovely Day . .

Taylor made a cucumber and tomato train!!