Monday 31st January - In the news again!

When I woke this morning Mummy was looking at me through plastic. Apparently I wasn't coping in my pipes and shortly after having my cuddle last night because I wouldn't settle, the box was re-deployed. Upside is: I get to read my book again and see myself in the mirror. Downside, its warm and gets sticky, I can't get kisses.

Mummy went to see her lovely friend who is making necklaces, so far she has had ten sales of my purple necklace which is great news towards my fund! Amy helped Mummy make her very own one so she can wear it for me.

I was weighed today and for the first time in along time I haven't put on any weight - infact, i've lost some! I'm 6.78kg/14lb7oz. This may mean I've eventually stopped holding onto my milk and getting rid of it better. It may mean that I am just having a slow week or it may mean something else, whatever happens no one will know until I am weighed again next week. Nobody looked too concerned today so neither am I, yet.

Mummy was emailed by a newsy man this week and he has written a little story about me on his own blog, so hello anyone reading because of Nantwich News. 

http://nantwichnews.wordpress.com/2011/01/31/shavington-mum-writes-moving-blog-of-terminally-ill-baby/#more-5661 

Every now and again something happens and Mummy and Daddy have to remember that I am very poorly. If I wasn't in hospital, having drugs and being looked after then I really shouldn't be here at all. I am because at the moment the Doctors here can support my illness, by helping to control my fits and help me with my breathing. It isn't fun for any one who is in hospital, because they are sick. And it isn't fun for people who have to just sit and wait for you to die. I am only 5 months old (on Friday) but I'm deaf, my liver is enlarged; I can't eat for myself and I can't very well go to the toilet myself; I cant move my body or neck, and can't focus very well. But I am loved. More than anything and for now - thats the best I've got. Mummy and Daddy try and find things to do while they watch me so as not to go mad and then they just have to wait and see what other horrible thing this illness will throw at me. 
I know that Mummy loves me because she is always taking photographs of me and tells me how beautiful and special I am. I would like to be at home with my family more than anything else in the world. But sometimes you can't always get what you want, you get what you need. (Thanks Mick Jagger.)

Sunday 30th January - Out of the Box!

Daddy and Mummy both had lie ins today, just separately; Daddy missed breakfast as he was on the goggle box watching two sweaty men running round chasing a small ball. So when Mummy came in with fluffy hair and a squashed cheek from sleeping so deeply and not moving she went and got him a big breakfast in a plastic tub. She then she went home to get more clothes, she says her entire wardrobe and mine are pretty much here now although they couldn’t be more different in colour.

Dr Sakey came in today to monitor my oxygen levels and made the decision to move the box. I’m back on my pipes again. Don’t get me wrong, I am pleased about it, even though I might not show it easily. Daddy asked that they leave the stickies off my face for now and make sure I’m ok. I am late for my 16 week injections so they will arrange for those this week, joy.

There was a very busy influx of people at two o’clock; anyone would think they were all waiting patiently for the doors to open like the Next sale! Crikey – it’s only me. I get my milk at two and there were lots of people watching me so I got upset and so Mummy had to ask people to leave. Then after my milk one by one they all came back in but the nurses are worried that Mummy gets stressed with so many visitors in one go and think that maybe just two at a time is plenty, especially if I have a funny do.

Nanna came in again to see me she ate her lunch, read her paper and did her crossword and then gave me kisses before leaving. Grandma, Uncle John and Aunty Sammy came too, Grandma brought a bag of my smaller babygrows and vests to give to the ward for in their stores but also she is going to cut some up!

Shelley had suggested that she could make a patchwork quilt with some f the material. Mummy has never made a patchwork quilt but she thinks it’s a lovely idea so she will have a go! (Any hints and tips anyone??)

Doggy Walking friends Jane and Steph brought in goodies for the raffles, I have to say a big hello and thank you to Alicia Chadwick who kindly gave those things to bring.

We will be having a Raffle in the ward when we launch the purple wristbands and will be having a ‘Wear it Purple’ for Ellie day. If anyone else wants to take part in ‘Wear it Purple’ at their school or workplace and think they could help launch the bands and create more donations that would be fab! (Wear it Purple day still TBC)

 Mummy saw some pictures from yesterday that there is a big blank space behind the chair where I get my cuddles. She is going to get a map of the UK and the World and tell me all about places that she and Daddy have visited. They haven’t been everywhere though and are interested to know where all you blog readers are from. How do you feel about emailing Mummy at lou.prince@live.co.uk to tell us a bit about yourselves? You know us, we’d like to know you and then we will put a sticker on the map of who you are and where you are from.

Right, its nearly nurse changeover time and I'm due cuddles with Mummy so I'm off for now. 

Saturday 29th January - Great Grandma Nora

I was pretty good last night apart from a few coughing fits and O2 desaturations. Mummy seems to have her own inbuilt alarm because she is awake and standing over me with the suction within seconds or rubbing my chest even before the monitor gets time to beep. I had a sneaky in-out visits from Ray Ray Red Boa and Becky, who really mustn't trust me at all.





I have spent some time awake today, looking around and kicking my legs about, its easier to kick when I'm in the bath especially if Mummy holds me off the bottom. Dr Sakey said that we should try and find a big bath to put on my cot. None of us know wether he was joking or not. Daddy say's any excuse to go to B&Q.

When I'm awake I like to look up at my box window, above me is my panda, my black and white book and squirly shapes but also some new faces, a penguin from Great Grandma Nora and the best one, ME! (I have a mirror)
There was a lot of hustle and bustle when finally I got to meet my great Grandma Nora who had come all  this way from Scotland. There were flowers and belated Chistmas and birthday presents, we had lots of pictures taken as there were four generations of Princes. Me, Daddy, Aunty Sally and Great Grandma Nora. I 'm not sure if Grandma Nora is a bit scared about me being so poorly but she gave me kisses anyway.
Nanna arrived during the all the commotion and Mummy told them about my necklaces and they all wanted one! 

www.iheartyoujewellery.co.uk

Have a purple Heart for Ellie

To celebrate my 21 week-a-virsary I have some amazing news, one of Mummy’s very clever friends has a new hobby creating pretty jewellery and she has created a special edition ‘Wear it Purple’ necklace just for  me. The great news is it’s available for sale with 50% of the proceeds coming to my cause. How generous is  that? 

If you would like to see more and a link to buy my purple necklace or others please visit www.iheartyoujewellery.co.uk

 Due to some technical issues today's blog will be delayed... apologies

Friday 28th January - Camping

My night was mainly: high temperatures, coughing, calpol, ibuprofen, low O2 levels which were all pointing to a cold or virus. I had to have a tube put down my nose to suck stuff up and it made me cry. Daddy stayed last night but I made the machines beep and beep and beep. Sorry Becky – I don’t think you left my side hardly all night!

Poor Daddy, he really needed a strong cup of tea in the morning when Mummy turned up.

 I said goodbye to the first doctor who ever met me today, Helen. She moves on to another hospital as part of her training so she came to say goodbye. Mummy thanked her for looking after me so often and she and Daddy were sad to see her go, as well as the others that have all had a hand in saving my life at one time or another.

Vicky gave me some special salty oxygen to help clear yucky gremlins from my throat this morning, it was a bit awkward getting in my box but she must have bendy arms! I was so tired today because I’d had no sleep yesterday and hardly any over night and as I don’t do coffee or Red Bull, I was very grumpy, there were some tears.

Daddy put a blanket over my box to help me go to sleep; the blanket has stars on it so Mummy said it was like I was camping in a tent!

Dr Burns called so see me after his morning clinic, he is very kind, I feel very lucky to have such a thoughtful doctor, and there isn’t many a day that he doesn’t pop in to see how I am. He thinks I may be brewing a cold which considering I’ve been here for nearly nine and half weeks (Is it really????) is not bad going: not when I am in a hospital with so many poorly children and babies.

I met someone new today a lovely lady with long auburn hair and her cute son with a very fancy name, this is Marianne and Abraham. Marianne is a clever arty lady. She made my beautiful bird mobile which Mummy says she will bring from home for me for something different to look at providing it gets past health and safety, because its cloth and can hide germs apparently.

They did smile and say hello for a bit but I was still grizzly and Mummy’s camera made them blink so the only picture she had was this one of them telling me a joke and then laughing afterwards. She must have kept telling Mummy jokes because when Mummy came back from the tea shop she was still smiling.

I slept today for a quite a few times so I am feeling a bit more relaxed and no longer lying with clenched fists.

Rachel came today while I was sleeping and brought a huge bag of home cooked meals from her and Big Ben. Wow, Mummy was very impressed and thankful.

She was there when I woke and while I had cuddles with Mummy, she did nurse duties passing Mummy the suction when she needed it and holding my oxygen mask. She did lovely Rachel duties too, like stroking my hair and gazing in my eyes. She took some pictures of Daddy, Mummy and Me and they pretended I didn’t have the Oxygen mask, hiding it each time she said ‘Cheese’.

 Big Day tomorrow, I need to get some sleep and be feeling ok because I am meeting a very special lady, my great Grandma Nora! I hope she likes me.

Thursday 27th January - Hands and Feet

Grandma and I had a lovely night, I didn’t sleep too well because I was too excited about her being here. She told me lots of stories about when she was a little girl and stroked my tummy to help me sleep. I wasn’t really settled though, every now and again I felt my body twitch a little, first my hands then my feet, Grandma was keeping a very close eye on me until it was time for breakfast and Emma came in with my milk.

It was an early wake up call for Mummy and Daddy but enough is enough, they can’t possibly think I can allow them any longer away from my bedside. They were quick getting to me; it must have been only minutes, but the doctors had started my breathing again by the time they arrived and their faces started to look less pale and worried.

Cups of tea later all was quiet again, I’ve been told off by a lot of people today and I think Mummy asked people to come in especially to grumble at me. It’s been very busy, with Annie with a purple folder and stationary box for Mummy, Bev Curly Bun chasing my Health Passport, Karen the Pharmacist, even Dr Burns came to increase my drugs after my little 6am party this morning.

 

Pink Lady Shelley has been in today with a lovely card with some donation money and got Mummy painting my feet and making prints again. The paint was cool on my heels and the bristles of the brush make my toes curl so my prints looked a bit funny.  Mummy redid my feet moulds too, she mixed the funny rubber solution and she and Shelley squidged my feet in while it set, then she poured in the paste, waited until it hardened and then finally set it in a frame. She is much happier, I know as she keeps showing it off to everyone, I mean really – they are only feet! (Cute though.)

She’s obsessed with my hands too, she opened the little plastic pink boxes of my sensory kit and I felt jelly; all sticky and soft, a pebble; all smooth and hard and rice; grainy and loose. What strange sensations!

I had physio with Caroline and Lynne while Mummy went out to see her sleepy friend Kate; when she came back she said they’d had coffee and cakes like they did before I was born. They a lovely chat about trying to be a Mummy and it changing you as a person and about how they both miss having a good nights sleep.  I think it’s nice that Kate and Mummy have baby breaks from time to time.

Getting Grizzly in my box

Before Tea I had a few visitors, Sarah called to bring Mummy a bathing suit for her to wear if I go to Hydrotherapy. And a fabulous set of old fashioned style building blocks to sell for my fund.  Grandad, Nanny Tina and Bella were here again too and peered through my box windows at me they talked about the triathlon and purple hats and purple balloons. We are going purple mad!

I’ve had bath time with Ruth and then a massage and new top ready for bed which Ruth said is very pretty (£3 from Tesco ;-)) but I’m just not sleeping…think I need a Mummy cuddle so sorry, she needs to stop typing for me now as cuddles are more important than anything else in the whole world. Oh scrap that. I've decided to have major coughing fits and oxygen de saturations and crying, much more exciting -  I get everyones attention that way...sorry Mummy maybe tomorrow.  
(Rubbish :-( )

Wednesday 26th January

Firstly, most importantly Mummy has asked me to wish Big Cousin Tracy a Happy Birthday and send lots of kisses. When Mummy is at home she remembers birthdays but hasn’t got round to sending a card.

Nurse Donna helped get my breakfast today, she has a little boy who swims with my friend Kellan (the one that likes to chew things) and she wanted to do something to raise money for my cause, she is arranging a special Teddy bears picnic at Shavington Play Group at St Marks in February for babies and up preschoolers, the date has yet to be confirmed.  But it sounds fun; the hardest thing any boys and girls will have to do is pick their favourite Teddy to go, I wonder who I would take? Polly maybe, Merryday, or Flopsy Bunny?

Snowman Cake Ruth checked in with Daddy to make sure he was still training for the triathlon, he says he has been doing mile runs and is getting ready to step up. He says that his belly has been sponsored by John Smiths and Dominoes for such a long time that he needs time to adjust to the new regime.

Saw my agent Annie today, she had found collecting tins for a little fundraising idea Daddy had. The tins are red but I’ll forgive her as they can be dressed up with my stickers made by my advertising manager down in London, Dave. (Thank You again)

We have some exciting news that we will be able to launch some charity wrist bands for Ward 17 and www.littlemissellieprince.blogspot.com, we will be launching them in the Ward on a special day in February as soon as they arrive. Watch this space!! Orders for wristbands are welcome! They will cost £1.00 each on the ward or allow postage costs if you are interested and would like some sending out, it will all help to put more money back into the charity.

Becca and below her purple sandals!

I got to see my little friend Becca today she rode into my room in a big black and red wheely thing. I remember having one of those and going outside once. Becca’s got the fanciest purple sandals that join up to her purple trousers. Mummy says it’s her special cast to help her hips and legs. She looks like she would be very uncomfortable in it and yet she never grumbled all the time she was here, ooh except when she wanted her milk! She told me lots of stories about when she was in hospital too, it’s nice that we have something in common like that because not all my other little friends probably understand quite the same what it can be like. She chatted and meowed in language that only really she and I know and we whispered secrets to each other. I was on Mummy’s lap most of the time so I got some kisses and strokes from Becca’s Mummy Amy too. Amy a very clever girl and Mummy can tell you something about why soon….

Alison Flowers finally got brave

enough to visit today, she had read the paper and been following the blog, but hasn’t seen Mummy since I was floating around inside a pretty top she was wearing back in July sometime. Wow, a LOT has happened since then, I think Mummy and Daddy could have talked and talked for ages catching up.  I know because I was wide awake, being good relaxing in Mummy’s arms. I think she got achy though as she peeled me off her arm eventually and placed me back in my cot ready for tea. That was one long cuddle it was so lovely.

Alison’s doggy is friends with my doggies but they haven’t been able to play for such a long time. Mummy and Daddy miss Marlee and Lilly so much, they must because they even brought some things from home including some of their hairs. 

Grandma is having a sleep over with me tonight, to give Mummy and Daddy a break. She seems a little nervous but has made sure she slept in the daytime in case I keep her up late. I’m having a little shut eye now so we will see and even if I am awake later I’m sure she won’t really mind. ;-)

Tuesday 25th January

Just so you know, being in a box is pretty boring and as I have even been struggling with my oxygen levels in the box it doesn’t make for a fun day.

To add to this, there was sicking up all my lunch in the box and having other accidents you really don’t want to see, or smell.

These things, outside of the box are normal and typical baby stuff so I’m informed but the continual gasping for breath? Not so much.

The one benefit to needing my bed changed is that I got to get out for cuddles with Mummy, so I had a little bit of a look round, a bit f a cry and a bit of a sleep.

When Grandma came she gave me lots of head kisses which are soothing and soft on my head, which gets warm and sweaty in the box.

Suze looked after me today; she is very kind and always very upbeat. Mummy says she thinks that so many of the nurses do so well looking after me because it can be quite emotional and yet they continue to be so polite and friendly even when they might be sad inside.

It must be strange because usually when you go to hospital they work really hard to make you better and send you home and that is every one’s reward for doing a good job. Here everyone works really hard knowing that I will never get better, but they do it all the same and they do it very well, that’s why we like being here.

Its Burns night, Daddy put on my Hielan Coo bib, even though I don't wear bibs anymore, he said thats all we've got with tartan on, its a poor do that I don't have a wee kilt!  Mummy will have to be more organised for St David's Day with leeks and daffodils... picture is suspiciously missing due to another battery failure.

I had a little bit of time in my nose pipes in order to have a nice bath, Emma lifted me carefully and splish splashed me while Mummy took photos. Afterwards I got to be naked and all tickly with a big red feather boa that Ray Ray brought in. It was very nice but now there are lots of tiny feathers everywhere!

Monday 24th January - Short but Sweet

Mummy told me that another little baby with my condition has died over the weekend, this is only a few weeks since a little boy too passed away. Their families are in America somewhere I think. She wishes them lots of love. She says it really brings it home to everyone what is happening with me and it’s really sad.

She has been on Facebook today to start a ‘Cause’, to highlight Zellwegers and a new Facebook group to try and connect even more families coping with this yucky disorder. http://www.facebook.com/home.php?sk=group_125397297528689

There is also another fantastic cause from another family http://www.facebook.com/pages/Dexters-Wish/183057068383656

I have been asleep a lot today, I keep drifting in and out of awakeness, I see people coming in and out of the room but the conversations I miss a lot because I fall to sleep.

There is some discussion about arranging time for me to go to the hydrotherapy pool to float with Mummy and Daddy. It would be amazing, but it’s a scary thing to organise. I need a costume which Mummy thinks we have at home from Cousin Beth, I hope it fits me because I was weighed and have put on more weight today, now 6.86kg/15lb 2oz. Nadine has provided some of my little friend Andrew's unused swim nappies (Thank You), that'll keep Lynette the Physio happy that its only Me, Mummy and Daddy that will be swimming in the pool.

Mummy has had some lovely emails from people wishing us well; she found some in a junk mail folder and was very sorry that they seem to have been filed by the computer. (Chloe and Alison, thank you for your lovely messages. X) She has been looking at me through a lens a lot today and trying to be arty farty. She likes making pretty pictures and says I’m the most beautiful model in the world as well as the sleepiest.  She is planning on taking some more pictures tomorrow.

Daddy is engrossed in the Star Wars trilogy at the moment, I think I sound a bit like the man in the black helmet while I am in my box snoring.

Sunday 23rd January - Back in the Box

I hadn’t settled overnight keeping Daddy awake so it was no wonder he didn’t get up until after nine, I’m not sure what Mummy’s excuse was though, rolling in at 9.30, black mark against her name. I started the day being looked after by Knitting Nurse Helen and had a bit of a wobble just before my breakfast. I needed to have oxygen wafting while I ate but nearly stopped breathing; everyone was watching me very closely. I finally fell asleep with my eyes open just to confuse everyone.

                   It’s continued to be a bad day today; I have been mostly uncomfortable, coughing and crying with tummy ache and bottom ache and also lots of hiccupping. No one seems to be able to sort it out and now I am so fed up and grouchy I don’t know what to do with my self. Mummy and Daddy keep looking at me all puzzledandconfused.com. They keep moving me into different positions, and checking my nappy, then picking me up, putting me down. Suction on, off, in, out, don’t forget enemas and strawberry juice and a new one nurofen.

I think it makes them think that they don’t know what to think!

 

Mummy and Daddy have had to talk about when I die and what my funeral might be like. Mummy is reading a book that the hospice lady gave her; it’s got a white cover with a white lily one the front and has lots long of words in it. I think she found it hard to read while she was crying because the words were all blurry, so Daddy put it away for a while and said they would look at it another day.

Because I was grizzly Mummy thought it would be relaxing to listen to some music and she put on a special classical CD made by my little friend Will’s Mummy. That’s him on the cover! Hey Will, Hey Jan! Then I listened to my Lullabies, but they still didn’t make me sleep. Mummy wonders if it’s my tooth and has had a good old look at it today.

 

Holding my milk and my hand

                                                     Grandma came with Uncle John this afternoon, no sign of Aunty Sam as she has horrible studying for work to do so I’ve missed her today. Knitting Nurse Helen has had to go home early as she is poorly so Nurse Cynthia came in and made coffee and tea. The ward has lots of white spaces on the board but you aren’t allowed to say q u i e t just like you can’t say h o m e. ;-) Grandma brought a beautiful picture that has been donated for my auction, Cynthia likes it very much and kept pretending to steal it.  

Uncle John has got pictures of his shiny car in a shiny magazine, on the front page, a bit like Daddy in the Newspaper. Daddy wishes that our Camper was pretty enough to be in a shiny magazine, ‘One day’ he sighed.

 

                                                                                                   More in the news, I had a mention on http://www.parkrun.org.uk/reading/News.aspx because of Wendy’s 50 mile trot next weekend. She asked Daddy if the Reading Post could do a story, they are very welcome of course! Thanks for the extra publicity Wendy and big kisses to you and your feet. (Give a shout to my Nanna who lives in Bracknell and Uncle Jonathon, Aunty Julia, Beth and Thomas who are in Maidenhead hee hee.)

 

I was very late having a bath because Mummy isn’t keen on taking my probe off my foot, apart from the fact that is usually smells all yucky and sweaty, she’s worried that the doctors won’t be able to read my saturation and heart rate levels if I’m not plugged in.

So I had my bath with people on hand: ‘Doesn’t do Poo’ Sharon and the lovely Jade helped with my bath and then afterwards I was massaged from head to toe, finally I was able to relax and just about fall to sleep. But then I was too sleepy for my brain and it keeps forgetting to take breaths. After about an hour and a half Sharon said the immortal words, ‘I think we’ll have to go back in the box’. So, I’m still awake, I am now in the box, its Mummy’s bedtime and everyone including me, is exhausted. 

Saturday 22nd January - 20 weeks old

Saturday, really is it again? So that means it's my 20 week-a-virsary today. I have lived in hospital for 13 weeks out of those. Put like that its pretty rubbish.

To celebrate I had a lovely warm bath and then I decided to stop breathing. My heart rate plummeted and my Oxygen dropped, my face went grey. Daddy wasn’t quite prepared as he was still busy cleaning his teeth. It was three minutes this time, but it’s another one to add to my list. Every time is logged, symptoms, time, duration. This is getting to be pretty difficult stuff.
Daddy popped out to get some nappies; he can’t believe how exciting life has become. He also bought a magic internet box so that we would have a better connection here and save Mummy being up until all hours when it stops sending pictures. 

My fab sensory play things.

I got to play with some of my new sensory things that Jan made for me especially and gave to Mummy last night, but as I was tired I soon fell asleep. I did like my beautiful ring. It made Mummy think about all the things I will never get to do, have my first kiss, like fall in love and get married and have my own children. She wishes so much that I could have had all that and that she and Daddy could have shared it with me.

I'd have a diamond this big if i could!

My tummy continues to be the talk of the day, when Dr D called in he had a little feel all round my belly, Mummy asked what the hard bit was if it wasn’t stuck poo. He said that it was my liver, it was enlarged. This is the first time anyone mentioned this, as it has been functioning ok after my blood tests but Dr D said that it’s just another part of the Zellwegger condition as my body is not able to work properly and so far this is proving the case with my bowels too.

He sat on a chair to talk to Mummy as bad news is always safer when given to people sitting down, closely followed by warm cups of tea. It seems that the palliative care people will be coming to see me soon to discuss how to prepare for me to be comfortable as I get sicker. Mummy shut the door after he left, she put up the ‘Do not disturb’ sign and pulled down the blind. She was very sad and then it rained.

Daddy was gone long enough for Mummy’s tummy to rumble, but had butties on his return where he found Uncle Jonathan and Aunty Julia in my room cooing over me.

I got a long cuddle with Aunty Julia because I was behaving, I was showing her a new dress I was wearing and said how nice it was and she told me she agreed as she’d chosen it after I was born!

I was given some money from my cousin Beth whose birthday it was yesterday; she had asked her Daddy if she could donate some of her birthday money to my fundraising, she is only five years old that was very kind of her.  

Uncle Jonathan and Aunty Julia are planning a sponsored film-a-thon too, because they don’t like running but they are good at sitting. The idea of the film-a-thon is to watch back to back movies for a whole weekend and not go to sleep.  Uncle Jonathan has a big list of rules; he is just like Grandad Adrian, a stickler for the rules; Aunty Julia does not like the no caffeine rule at all.

I was awake for a long time looking round with my hearing aid on. I stayed awake long enough for tummy time and juice and then finally bedtime milk. Then I went back to sleeping again. I like sleep. Sleep means I’m restful. Sleep means I’m not in pain.  

Friday 21st January

Dr Claire dropped off some goodies for the raffle, she is leaving soon to go to another hospital because her time here has finished, all my other lovely doctors like, Helen, Ellie, Danni and Toni and some of the boys too are all going. I hope that the new ones will be as good at saving my life or there will be trouble! Thank you to all of you by the way. xxxx

There has been a big news story about a little girl called Ceyln Vincent  who is six years old, a lot bigger than me but like me is very poorly and her parents have to care for her all the time with little breaks, like full time nurses. They have had to do that for 6 years, Mummy says that she worries about the future a lot some days and wonders how things would be if I am still alive, this lady’s life could be ours in years to come and I don’t want to be taken into care because my Mummy and Daddy are too tired to cope anymore.

Mummy thinks that this lady is brave to challenge the Prime Minister, because he is the one person who can make a difference, but she says he’s a big meanie and would rather spend money on stupid other stuff than look after little people who are suffering here and now.

I’ve spent sometime in my chair today and it’s very comfortable, so much so I fell asleep, when I do Mummy giggles because my foot twitches when I’m dreaming. Daddy tried to play poker with me, but I’m still not very good at calling his bluff…

They tried to get me on my pixie dust again to sort out my tummy but I needed another annenenanenena, you know one of those. So Mummy had a quick Google and had some other ideas, fruit juice, apparently, so after talking to Slim Fast Plan Kath we tried some fresh orange juice mixed with water.  Well, within an hour it had worked – how good is that?  I am on quite a big cocktail of drugs, so it’s nice to have one less. But as with me, being so special, there’s no guarantee that it will continue to work.

I had my posh visitor today, the hospital Big Boss lady Tracy, came to check up on me, I think she can’t quite believe I’m still here, neither can Mummy and Daddy but she’s very kind and she really appreciates all the fundraising we are doing. We also had a visit from my Audiologist Katherine who says she is signing up for the triathlon too…Mummy says they are all mad and is glad she has a dodgy knee. (Honest)

Cadbury Lou and my friend Kellan came today; Kellan is such a smiley boy!  Lou didn’t let him get to close to me in case he put me in his mouth, apparently he does that with everything. I’m not sure I want to be sucked and chewed on so Mummy let him have one of my toys instead, he seemed reasonably happy with that, but I’m sure he was still eyeing up my tubes. They chatted for a while before having to go to make way for my Grandad, Nanny Tina and Aunty Bella. I’ve never known Aunty Bella so quiet, she just watches me carefully, with good reason as I can be a bit scary. Grandad really wants an Ellie T-shirt if we get some but Mummy said he can only have one if he does some fundraising. He hasn’t got very hairy legs so he said he will talk to some people to see what he can do and he did a secret nod and twitch. Ooh, I wonder, he used to like to play golf, I wonder if he could arrange a little charity match?? Just an idea Grandad?

Emma Enema, ha ha! Not really, was in today, she’ll tell me off for that but she said she’d like a nickname and Mummy can be naughty sometimes. To be honest now so many of the nurses have helped with my enemas they should all be called that! So she’s just Emma, pure and simple, no need for a nickname, there’s only one. (x)

She was adamant she was going to bath me today but the ward was so busy she just couldn’t. Mummy and Daddy have mastered the art of juggling me, tubes, sponges and bubbles but they like to have someone on hand just in case I misbehave.

At six thirty, Mummy looked all fluffy and had drawn on her face a bit, she said goodbye to me and left the hospital. Daddy said that she had gone to relax for a little bit and would probably come back with a smiley face and a full tummy. While she was away I had a full tummy too but it was very uncomfortable and I cried and wriggled a lot. Daddy was lovely and he looked after me well and I was fast asleep when Mummy came home. She fed me though and gave me my drugs, she sat up with me during the night when I was uncomfortable and she got ‘Don’t do Poo’ Sharon to make me do a poo, (she soon ran away though) and get me night time strawberry juice.

I’m looking forward to seeing Uncle Jonathan and Aunty Julia and maybe cousin Beth. It was her birthday today so we need to give her big kisses if she comes.

Thursday 20th January

Last night I was dressed in a nice spotty sleep suit that I’ve not worn for a while, but when Mummy tried to slip it on she realised I’m too long. I’ve outgrown all my sleep suits, blimey when did that happen? ‘No Problem’, said Mummy and grabbed a pair of scissors, ‘I’ll go shopping tomorrow’. Now I am fashioning trendy cut offs, that’s what she tells me anyway. Daddy says she’s finally gone mad but everyone was laughing about it so it doesn’t really matter.

I didn’t get to sleep until gone 12pm again from 7pm because I had a horrid cough again, this time though it was very persistent and although I slept a bit, there were a couple of times when Mummy had to insert the sucking tube in my mouth and collect bubbles.  I don’t know what she does with them all.

I had a temperature of 38 degrees at one point so they decided later to sneak a wee wee sample when I wasn’t looking, to check for hidden infections.

(Which was negative, but they like to check. Nice of them isn't it?)



Snoring my head of in my Laz-ee Boy!



I grizzled and dribbled well into the early hours and finally fell asleep in time for seeing Daddy.

He’d taken his new trainers out for a spin this morning, he said because he was still alive (barely) that he would definitely go out again tomorrow. It was very cold when Mummy popped out and slid to the car park, she had to defrost the car. Instead of going shopping she had another look in my wardrobe at home and came back with clothes she had for me. (Cue Ellie fashion parade over the next few days.)

When she came back I was having a good old doze after my physio session where Anne and Caroline had got me sat up in my tumble chair again. Everyone was amazed at how much better I fitted than last time, something to do with my newly formed girth I believe.  I guess all I’m missing now is by remote and a pint of John Smith’s and I’d look just like Daddy when he was at home.

http://www.familyfund.org.uk/default.asp

Shelly one of the pink ladies slipped her head in today just to tell us about a charity called Family Fund, who help families with disabled children in England and Wales get grants to help for work around the house to make it safe for children. She thought it would be god to help us because she heard Mummy say that the kitchen was in a state if we had to go home with me but Daddy has been able to sort that out now! Very thoughtful though.

Agent Annie came to visit today, she has changed her hair colour but I know it’s her as she hasn’t changed her smiley eyes. She tell us that something cool that has been organised for the charity is on its way….and after campaigning a few people today we reached £3500 35% to target, we passed over the line with East Cheshire Deaf Children’s society who amazingly have donated to my cause – and they are a charity themselves. How fab. Kisses to Maureen for championing me! (Ooh and Becky, thanks for the amount that got us back to even numbers!!)



Asleep but still dancing!



Grandma was here and Mummy was asking her how she felt about maybe staying over ne night to watch over me. In order to demonstrate what sort of things she might need to look out for I had a bit of a cough and splutter and dropped my oxygen levels to 53%. Mummy and Daddy were very efficient, applying suction and oxygen and keeping me stimulated so I didn’t go off Ellie Gazing.

Definitely time for a bum evacuation I’d say….so a new student Nurse called Rosie, got to see it happen. Mummy was very disappointed that she didn’t wait around to tidy up. ‘Poor Show,’ she sighed then winked at Daddy.

Emma fed and dressed me all ready for bed tonight while Daddy and Mummy had a bite to eat in the parent’s room.  Now it’s back to another boring evening for them just sitting here watching me sleep.  Every now and again I throw them some shapes with my hands, just to keep them on their toes, I think Daddy thinks he’s in for a long one, we’ll see. Night, night all.

Fundraising suggestion of the day….from Karin is:-

www.easyfundraising.org.uk, register and select your cause before you do any online shopping and the participating retailers should donate, stores like Tesco, Amazon, and M&S!