How to get the best out of this blog...

All blogs post are more recent first, if you want to read about Ellie's Journey I'd suggest starting from the first post back in September 2011 (October Posts) and read on Chronologically from there. It will make more sense and you'll get to meet the little girl who gave my life purpose.
Thank You for reading - every new reader shows that she has met another person and in her short life made such an impact. x

Friday, 31 December 2010

New Years Eve 2010

Annie came to see Mummy and Daddy today – she is uber impressed with their (your)
Fundraising Activities and has been trying to help Mummy and Daddy out a bit in return. She has found a little place for them to stay on the hospital grounds if they need a break from the Ward.
We have been waiting to find out if Social Services can help in any way as the start of the ‘Getting me Home’ plan, this has proved a bit rubbish unless Mummy wants her ironing doing and although she isn’t really a fan of ironing, it did interest her but then what could she punish Daddy with?
Chris from Homecare came to check on me, I’ve noticed quite a few people who haven’t seen me for a while keep saying that I look bigger – is this a polite way of hinting that I’m a fatty??
As I had enjoyed my feathers yesterday, Helen from the play team put together a box of lovely touchy feely things and brought a small blackboard to have up for visitors like we used to have at home. I've had them very busy today as they have also made a big barometer to track the fundraising progress, they hung it on the door to my room to show everyone what we are trying to achieve. We reached over 10% of Target today!!
Grandma and John came this afternoon, and Uncle John held my Milk while Mummy’s arm was getting tired, Grandma brought more clean washing, she’s so kind!
Then the chocolate lady, Helena came from Mummy’s work, (we have really similar names, but she says mine is posher?!) she forgot to bring chocolate but she says that its ok because it gives her a chance to come back and see me, instead of buying a teddy and a balloon she donated to my fundraising page. http://www.justgiving.com/Ellie-Prince Cool hey?
I think she was a little bit in love with me as she stayed much longer than she said she would and watched me have my bath. She had to go back to Nottingham so she left before Grandad and Nanny Tina came to wish me a Happy New Year.
Daddy and Mummy had a smelly curry tonight, I feel sorry for Sharon the Nurse looking after me tonight as Daddy is on night-watch! Phew Wee. Night, Night then, hope you have good New Years Eve fun. This is my last post for 2010. Crikey. What a busy year.



Editors Note at the end of the year……
 I look so tired, I hadn’t noticed until now, Ellie is asleep. She was allowed a smidgen of fizzy something on her lips and its gone straight to her head!
 As for me - I‘ve just processed 2010.  From the start in January saying goodbye to Ellie’s Great, (Especially Fab and Great) Grandma Florence on the same day I saw Ellie for the first time, the size of a little grape, I have been honoured to have this special Angel let me keep her safe and bring her into the world. From her emotional day of birth through the past four months of her troubled life and this shitty, yes shitty, crappy sickness.
 I just want to say to my brave girl on behalf of me and her Daddy that we love you darling, forever and ever and always.  I am overwhelmed by my amazing friends and family and all of you who are reading Ellie’s blog and helping us build a memory of her that we will never be able to forget.
I know there is every chance this isn’t going to be a Happy New Year, not for us,  so I wont raise a glass to that, I raise a glass to my beautiful Little Miss Ellie and hope you all will do too.  xxx













Thursday, 30 December 2010

Thursday 30th December

Wow, I’ve been making money while I sleep – so that’s what it’s like to be famous!
Mummy only told people about my fundraising page and let it go live at 11pm last night.
Seriously though Thank You so much for those of you who have started to donate, the ball is, a Mummy says, starting to roll!









A special mention to Claire Coombs who has been sweating it up in the Gym today (So I'm informed, but if not Hulla Hooping on the Wii is perfectly acceptable as an alternative in Mummy's book ;-) ) in order to prepare for Nantwich Triathlon – she loves cakes and hates exercise as much as Mummy does and is offering to donate her sponsorship money for my cause – that is so amazing Claire. Keep up the Good work - Daddy will be running after you soon enough.

As I have been a good girl I got to come out of my box, I had a smashing splashy bubbly bath and then got my nose pipes back on and then got dressed in my designer surfy wear from Uncle John and Aunty Sam, thanks dudes.
I was hoping to look glam for my Chronicle picture but as the lady is poorly sick, I didn’t get to tell them about my fundraising or show off my wardrobe. As Daddy likes moving things round and tidying my bed has been repositioned and I have a different view today, I now have my Humphry mobile from home to watch as I like things that move now as well as lights.








I had a visit from Helen who came laden with moulding kits, seemingly Llandudno is where to go for plaster casts kits. (Poppy? A trip to the Great Orme perhaps?)  She said she didn’t want Mummy to get upset if she made another boo boo so she bought two! So nice of her, kisses Hels. Xx
Mummy asked for some feathers to tickle me with today so she and Helen could stroke my face, hands and feet…it was lovely…I could have smiled…if only for these face stickies!!

After Helen went, an old school friend of Mummy’s came to see me, Sharon, she is a very good runner, she said wants to run to raise money for me if she can – she just needs an event to run now if anyone knows of any good runs coming up please let us know. I was pretty good while she was here and then she mentioned she had to leave, I threw what is commonly known as a wobbly, not a tantrum, (I’m too young for that) but my heart rate starting jiggling up and down and I think it scared her a bit so she had to rush off…sorry about that, I think this is why Mummy likes to warn visitors I can be very naughty without warning.
By the way - I am now officially a tweeter, FOLLOW on LittleMsEllie, I want to spread the word and get some famous people to follow me and help support my cause. Imagine if I could have a whole ward dedicated to me, never mind a room. Mummy says I can aim for the stars if I want to, because I deserve to be with them.

Wednesday, 29 December 2010

Fundraising!

I now have a fundraising page.


I am dying from this horrid horrid disorder, I dont know when but sometimes it feels like only days, but I am so special to my Mummy and Daddy that they dont want anyone to forget me. They are so grateful for the kindness and support we are given here that they would like to raise money to supply enough equiment to furnish a room in my honour. Mummy says that the mean politicians might take away funding from our hospitals and so people keep asking how they can help, heres how!
:- Instead of buying me teddies, (I have enough love and cuddles here) and chocolates and cakes for Mummy and Daddy (they need to lose weight), if you want to help, please donate that money here instead, whether its 50p or £50 (Thats a nice big box of chocolates by the way, so maybe we can discuss things...hah hah ahha) I know there are a lot of babies and children and their families in the Mid Cheshire who will have been to or are likely to need Ward 17 now and a long time after I have gone.
If you are thinking of doing a charity event, why not do it for my cause.....all of your support is gratefully recieved.
 
Here's the official blurb about what will happen to your money.....
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.
So please dig deep and donate now.

Wednesday 29th December - A little near miss for a Little Miss

Not to bore you but I had another near miss this morning, Mummy woke up and was ready for it, I think I shocked Nurse Tanya because although she knows me – she’s never been there when I misbehave. I know that after I come back,  from where ever it is I go (I’ll tell you one day) that they all make jokes with me but today Nurse Ruth made deep sighs this morning. Secretly I think they are all very worried  but they aren't allowed to tell you that.



I think Mummy is either being tidy or grumpy but I think Christmas is over, the cards have all gone and all my jingly, shiny things have been put away. She told Daddy that she has put the Christmas tree back in the garden at home so it can help itself to water when it rains. I never saw our Christmas tree. I haven’t been home for over four weeks. I’ve forgotten what home looks like now but everyday Mummy keeps sneaking in little bits of home, today she brought my cot mobile and the dangly CD’s. (Thank you Stella for negotiating the step ladders)

While Mummy was away, Daddy did all the chattering for a change, he saw Doctor Steve who’s very, very, tall; everyone is deciding whether I should increase the drugs for my seizures, we are. Kim from homecare came in as there is some talk of all the ways to look at getting me home, I’ve noticed how people now use words like special and unique when discussing me and the buzz words of today are “How long is a piece of string?”
They are now discussing having a big meeting all about me and inviting everyone who is involved with my life and death to that matter – I am causing so much trouble...

On the plus side, (which I am) I was weighed today, Kath was very excited, currently 5.66kg/12lb8oz. Get me.

Do you remember me telling you about a lady called Annie the day I met Father Christmas? She works at the hospital and does communicating for a living, like talking and writing, like I do. She has been communicating with a reporter at the Crewe Chronicle, who would like to write a story about me we are meeting her tomorrow; I hope she’s not like Rita Skeeta from Harry Potter!
Mummy used to work for the Chronicle, not writing though, she said she’s not clever enough to be a journalist, she sold advertising. She said that the paper was always pretty thin in between Christmas and New Year and wonders who will read my story but if we can get people to hear how good my nurses are it’s worth a shot! Now I know it’s not Cheshire Life or OK but it’s a start. Mummy says she doesn’t want to be in the pictures for the Chronicle but if OK gets hold of my story she’ll reconsider especially if it means she can have a makeover or a pedicure!

While Mummy was out today she dropped some little notes through doors of some of our nice dog walking neighbours, one of them appeared by my cot almost immediately, now that is what I call a good response. That was Jane, she said they had all be asking about me and Marlee and Lilly because they just hadn’t seen too much of us and everyone was worried. She was so glad to see me, even just for a little while. I hope she will come again.

My Uncle Jonathan and Aunty Julia and my cousins live over three hours away but came all the way here and back to see me today.  They brought a picnic to eat in my room and a big tin of sweeties and chocolate muffins which was very kind of them (I shared them with the nurses tonight!) Daddy showed them how my cot goes up and down so even little people can stroke me! Hee Hee they lok like they are in prison!





I read my new book at bedtime but it took a while to get to sleep as I have a horrid cough, Mummy finds it difficult not to laugh at me when I cough as my whole body bounces and my legs jiggle up and down. Instead she does a good serious face at Daddy which makes him check on me while she is busy doing her administerial duties for me.


By the way has any one else noticed that Daddy’s head is starting to look the same both ways up? It is very scratchy when he kisses me, a lot like Grandad or Uncle John!




Tuesday, 28 December 2010

Tuesday 28th December


Merryday, our black and white doggy substitute
Daddy had an unsettled night but he's much better at ignoring all the noises in the hospital than Mummy is. My new room is right next to the nurses station, Mummy says its pretty noisy as it's the main hubbub of the Ward, phones ringing, bells jingling, patter of feet and chatter of voices.
Emma and Carol were fighting over me today, thats nice...I feel very wanted. Emma was looking after me today in the end, she is good to Mummy and Daddy and makes sure they don't get thirsty.

Mummy tried to finish off my feet and hand moulds today but ended up in peices because the hands broke into peices, some of the fingers broke off  and when she went to finish the frame she made a boo boo I think Daddy referred to it as. She was crying because she'd messed it up and it was so important to her. Grandma is trying to find another kit the same so she can do a better one, Daddy thinks it is ok but Mummy is a bit of a perfectionist about things like that. (See Rach, you could have got one for us. xx)



Daddy has re worked my feeds now to four hourly so we dont see as miuch of the nurses, not because we dont want to but because seceretly Mummy would like to be at home and if she was she wouldnt want to do the horrid early and late night feeds. They have talked about going home, its not looking imminent as there would be so much to do to get sorted and we really need to have some help lined up, I am a big responsibility and it doesn't help that I had a bit of a do today. 
It was about four in the afternoon,  I was a bit quiet and went starey, I knew it was coming, I made a small cry yo let them know and they were all very quick.  Daddy had spotted my heartrate dropping. My doctor is having a break so I am sharing lots of other Doctors today, I haven't made Dr Ellie run to me before so thought today could be her lucky day! Daddy held my airways open and Dr Ellie breathed for me while Mummy kept pinching my toes. I took quite a while to remember how to breathe which everyone found very frightening.  I know when I've been really bad as I get put back in the greenhouse box.

Things look quiet for visitors for the rest of this week, if anyone who hasn't been would like to come please give Mummy a call or a text. I'm hoping to see Uncle Jonathan and Aunty Julia said they might be able to come and see me - I'd like that.

Blog statistics! - Wie cool ist das?

Mummy looked at my blog stats today - pretty cool! At the moment - top blog followers are all you lot from the Uk but No2 is Canada, 4th US, 5th - Australia, 6th Netherlands then Portugal, Belgium, Ireland, New Zealand and Switzerland and Russia??
Wow I'm poplar in countries I've never even visited, thats amazing....where else can I go?? I wonder if I eed to learn anthother language....lets see
Thank You for reading my blog - Happy New Year to you. xx
Bedankt voor het lezen van mijn blog - Happy New Year voor jou. xx
Obrigado por ler o meu blog - Feliz Ano Novo para você. xx
Merci d'avoir lu mon blog - Bonne année à vous. xx

Diolch am ddarllen fy mlog - Blwyddyn Newydd Dda i chi. xx
Спасибо за чтение моего блога - С Новым годом вас. XX

Monday 27th December

When I woke up early this morning there was a friendly face watching me, Nurse Tara was talking to me and showing me all my toys while she gave me my breakfast. Mummy was pretending too be asleep but I think she makes Mummy giggle listening to her talking to me so she couldn’t pretend too hard.
Some days go fast some, days go slow, as far as yesterday it was a slow day for my tummy as I had to have some help making me go because I was very uncomfortable, Dr Claire gave the go ahead for the magic bottom pills!
Nanna came to say goodbye as she has to go back home to see her kitties I had my hearing aid on so heard the big squeaky kiss on my head when she said goodbye.
Then Penny came bringing pizza for tea and spent the afternoon which was nice. While she was here I had my hand moulds done. Everyone is very impressed with the moulding kit,(Clever Helen) even Mark who gets Daddy toast, he said they were good and that when he did his little boys moulds they looked like ducks feet! (Maybe there is something he isn’t telling us, ha ha!)
Daddy watched a movie that he’d had for Christmas and although Mummy had promised to watch with him she seemed to be snoring even before the start of it!

Sunday, 26 December 2010

Boxing Day

Mummy says something like the reason Boxing day is called boxing day is because once upon a time rich people boxed up their Christmas left over scraps and gave them to the poor and that nowadays its probably just because of all the rubbish Wii and Playstation boxes that are lying round.
I was good for most part of the day, I was allowed a bath for the first time in ages because Mummy had been scared I might 'have a do' in the water. and having a bath isnt quite straight forward as at home. The easiest way is to strip me and my bed off, put the bath on my bed and me in my bath and then do all the nice bits. Daddy holds all my tubes out of the water and Mummy holds me while squshing water over my belly. I loved it, I tried to smile but these stickies on my face are so tight, Mummy says they do the same thing as botox and stop my face from making any expressions.




We had a flurry of visitors at one point, including the Doctors there were just too many people - don't get me wrong I like having visitors its just that we dont have the room for a party. Everyone comes and just looks at me - I guess because I'm cute, maybe I look a bit funny too, they stroke my arms and kiss my head and hold my hand and I can feel their love. I might not respond to it but I know.
I had a visit from a big red elephant from the fire department today they brough chocolate - Cadbury's of course.
I was pretty relaxed for most of the day, wearing one of my groovy Christmas outfits from The Williams', and even got to have a lovely shoulder cuddle with Mummy but I think my windiness decided to ruin it as I was really uncomfortable for a bit and then without warning had a seizure in her arms, it was only a quick one this time but i glazed over and she started to rub my chest and blow cold air in my face, I kept blinking at her to tell her I was coming round but the nurse wanted to help as well so the doctors did come running in, but I was ok again. I slept really well after that. Not sure anyone else will. Dr Helen said she'd run all the way down the corridor, I think I help to keep everyone fit...bit by bit they will all be wearing trainers when they look after me.....


Saturday, 25 December 2010

Christmas Day - The Hospital Way

Christmas day - its all about lying down and chillin out!
 
Now Im pretty sure that noone really wants to be at work on Christmas day but some people, like doctors and nurses, have to be. For that, I'm glad, because as well as being employed to look after me I'm starting to think they might actually enjoy looking after me.
Like smiley Doctor Danny with her sparkely shoes looking at me upside down after both of my morning episodes, which at 5am  and 6am respectively were quite acceptable times to get parents up on Christmas day I would say. Not so sure Mummy would agree as she hold up her eyelids whilst typing this blog for me tonight.
So anyway Christmas Day in a Hospital, to all intents and purposes, very much like, Monday, Tuesday Wednesday...you get the picture, however there was the distinct smell of sausage butties and lots of packages with coloured paper and bits of shiny ribbon. This so I'm told is the work of Father Christmas! (Not the Sausages - that was Mark) As I cant really move I wasnt able to initiate present opening, so there was a definite backlog by lunchtime as I dont think Mummy or Daddy seemed very interested. I was, I liked the crunchy paper and the shiny bits. So I got to open things - with help of course - lots of lovely things...Mummy will do the thank you's later.

Grandma, Nigel and Nanna came this morning for Christmas day cuddles, both Nanna and Grandma were wearing special Chritsmas day uniforms, red tops and black bottoms! I had my special Christmas top on too. But I got so many clothes I did have a few costume changes during the day, who wouldn't. I'm becoming such a diva. Mummy had a present off Daddy which is a nice moving camera to get footage of me - its currently still being practiced with, before anything is uploaded to the blog and I become an internet movie star.
Dr Burns called in to wish me a Merry Christmas, I got a little telling off about this morning and now I will have to have more brain juice - I'm all for it as long as it helps Mummy sleep better. (Editor must interject: I'm not taking it as well though you understand!)
Carol was looking after me today and Ray was looking after Mummy and Daddy, they were allowed a Christmas Dinner and the nurses made them go and sit at a proper table together for a change, they missed me though so were back sooner than expected and caught me grabbing a qucik cuddle with Carol. The nurses are becoming like a second family!

Mummy and Daddy did some more present opening after lunch and watched the tele box on the wall as there was a silly movie with a big green scottish giant that made them laugh. They ate chocolates and drank Cocacola and fussed over me - sounds like a perfect Christmas to me.
Carol had to finish work and go home for her Chirstmas dinner so Emma took over for the night, I think she was in a very good mood because she had spent time nice times with her family at home and although Mummy and Daddy wished they'd been home  they were in a good mood because they had spent their Christmas with the most important person in their universe, thats ME, incase you were in any doubt. ;-)
I've been so windy today - I could say its because of the sprouts, but even if Mummy was still breast feeding she hates them so that woulld never be the case, I was allowed some medicines but the best thing is having my tummy rubbed and Daddy helped me fart like a trooper - he said they were better than some of his, now that's saying something.

Editor: Just seen the time and really am v.tired - will do present roll call tomorow, hope you all had a great day. Keep your fingers crossed overnight!!

Friday, 24 December 2010

Christmas Eve!

Mummy had errands to do for Father Christmas this morning so went out into the snow, so I sat with Daddy and we watched Christmas Movies.
She came back looking very refreshed and smelling nice, she said that she’d been to see our fab nextdoor neighbour Jo and her little boy Olly made some Christmas decorations for us. I think that I probably have the prettiest room in the hospital, I think all the new people who come in to the rooms next to me are mighty jealous!

The nurses are all wearing sparkely bobbly things in their hair and o their outfits today, everyone is in a good mood and peole keep bobbing in to have a chocolate. Jenny got us toast for breakfast and even Dr Helen came in with home baked ginger biscuits, its such a pity that I only drink milk as all these Chistmas goodies smell amazing.

After lunch, one of the pink ladies, Helen, helped Mummy and Daddy to make a mould of my feet! They squished my bare toes into this cold gooey mixture and waited for it to set, it was very relaxing and it made me go to sleep. They then mixed up some plaster to put in the mould and have left it on the cold window sill to set. Mummy keeps wondering what the moulds will look like, she’s very excited to see how they turn out, she said my feet are so beautiful and these imprints will be something very precious for her and Daddy to have.



Nanna arrived bearing gifts and some new vests for me because I’ve got a bit big and I am limited for clothes to wear in the hospital because of the tropical temperatures. Vests seem to be appropriate, ideally I need things that can go on all topsy turvey as all my tubes make putting things over my head a bit tricky. But I have got a special Christmas top to wear for tomorrow from Uncle John and Aunt Sammy. They came this afternoon with Chistmas foodies for Daddy and Mummy, they stayed and had brews and biscuits, it’s all very festive.
Kellan’s Mummy Lou came with even more goodies and a tasty looking veggie lasagne that Ken made (Thank you!). Mummy says she’ll never lose her “Ellie Belly” at this rate. Lou stroked my hand while I was awake and said I have beautiful eyes.
I have had my beautiful eyes open for ages today, I like looking around, I would really like to smile especially at Mummy or Daddy as I love them so much, but my brain is rubbish and won’t let me.
While Lou was still here another little girl with beautiful eyes called Olivia came to see me, she is the daughter of the lady Mummy met last night.
She said that when she had seen me yesterday and saw my stocking she wanted me to have a present for it – that is so nice. Mummy started to talk in a soft voice and wished her a very special Chistmas as her Daddy was taking her home to be with her family. When she’d gone both Mummy and Lou had leaky eyes.


I thought that was it for visitors bit then we had such a lovely surprise, I thought Mummy was going to fall over, it was my special friend Poppy with her Mummy and Daddy, Jo and John. They have been following my blog avidly and had wanted to come and see us for hugs and Christmas wishes. It was very nice, I haven’t seen Poppy for ages because all though we were born on the same day and stayed next to each other on our first ever nights in the world I was whisked up to the special care until and then started my hectic hospital schedules.
Poppy is very pretty, she is about the same length as me but a bit bigger, she is much more alert and was very interested in me – I might not look interested as I can’t really focus properly but I really liked it when she held my hand. I am a bit jealous of Poppy if I’m honest because she has loads more hair than me!
Jo and John are teachers and John sees lots of children who have hearing impairments like me, he says he talks to them with his hands, he wants to show Mummy and Daddy how to do this with me and is going to send us a book. They are very nice people. (Kisses to you all!)
I was really tired after all these visitors, Daddy and Mummy helped me with my first Christmas cracker and put the silly hat on my head! The joke was rubbish – but apparently they always are.
I’ve moved house tonight – there was a lot of shuffling and fussing and I’m now closer to the nurses station, now I’m in a room exactly the same but also a bit different – can you spot the differences?


I am going to go to sleep now because Mummy said Father Christmas won’t come unless I am dreaming because baby dreams are so magical that they make reindeers fly and snowmen dance.
Have a Happy Christmas Everyone – lots of love to all my followers. Thank you for being with me. xx











Thursday 23rd December - 2 more sleeps!

 
Mummy can email her Canadian friend at 5am, thats why I dont see it being an imposition for her to be up at that time. Fortunatley one of the very nice healthcare assistants, Lisa made her a cup of coffee which saw her through until Daddy got out of bed at seven. Not sure if he noticed the chocolate on her lips from opening the Christmas Roses tin.
Daddy went home for a bit because he wanted to crunch his feet in the snow, plus Mummy said he was starting to look a bit like Father Christmas with his beard so he had a bit of a hair cut.

Dr Burns came to see me today while I was relaxing in my C shaped cushion, I have had a bit lof a temperature since last night and my injections so I think thats why I was so unsettled this morning. Dr Dawson popped his head in but as I'd already seen Dr Burns he just gave me a bit of fashion advice as my sleepsuit spots were clashing with my cushion - very seventies.


I have been very alert today, and as I spend a lot of time facing the ceiling the pink ladies from the playroom, Helen and Shelly came and put some Christmassy danglies up for me to look at. Daddy liked them too and he helped me have a nice sponge bed bath which was lovely considering I am very warm, I did some posing for Mummy in my towel.
I was dressed in a pink stripy nuumber afterwards, which was part of a set from Daddy's boss Jane, I have been too small to wear it until now - not sure wether Dr D would approve or not?
Vicky helped me back into my nasal prongs this afternoon, so that I could have a rest from the box -  I don't know as soon as I get a nostril back someone sneaks something else into it. So far I am doing ok but for how long is anyone’s guess!
Because I spent a lot of time awake this afternoon Mummy and Daddy found a large plastic activity gym for me to play with - I wasn't so bothered about it because I was watching the Chronicles of Narnia with Daddy. I tried
 to eat from my bottle tonight for the first time in ages bjut I think I've forgotten what to do and it was all a bit mch so I got upset, which in turn upset Mummy, how frustrating because I really do love the taste of milk.

I have a little bit of time with my Disco ball today that Rachel brought, it was very relaxing and it helped me sleep. Its Christmas Eve tomorrow and Grandad and Nanny Tina called with Aunt Bella to bring some pressies, but Mummy didnt seem very excited. Mummy is feeling a bit down about Christmas as she isn't spending it at home with me, Daddy, Marlee and Lilly like she would have preffered.
She met another Mummy with a very poorly daughter who is being very brave, she says that she is really encouraged by people like that because they are faced with very difficult situations  but seem to still manage to spare a smile and kind words to others.


Wednesday, 22 December 2010

Wednesday 22nd December

Daddy forgives me for being a trouble maker because I'm so cute.
I guess you could say I’m an early riser, today I got everyone up with the alarm at 5.30am, it was still dark outside other than the flakes of snow dancing through the orangey sky.
Five minutes afterwards Mummy was sat at the end of Daddy’s bed wrapped in a large green cellular blanket. They both looked pretty cross...even a warm cup of something didn’t make them smile. I went back to sleep for a hour and I think they just fell asleep leaning against each other before the emergency alarm was pulled an hour later. L

I must have really annoyed Daddy as he left the hospital and didn’t come back for ages. Carol helped Mummy with my feeds and then Mummy entertained me by putting coloured animal pictures all round my greenhouse.  

I heard people talking about me just after lunch, I thought they were talking about fashion as they mentioned ‘jeans’ a lot, turns out it was the other kind of ‘genes’, it was all very technical.  Kim is a Genetic Counseller who works at Alder Hey. She wanted to know all about me and what happened after I was born and about my family. She is hoping to be able to put some plans in place which mean that I can help Mummy and Daddy have another baby one day. Mummy says she always wanted me to have a brother or sister, since she met me she is even more adamant because she said if she can make something so beautiful once, then she would like to try again.
I think that she feels that if she was lucky she will get to have a little bit of me back
Zara likes looking at babies
somehow in another baby.

There is a lovely lady called Zara who works for Dr Burns, who Mummy and Daddy know because she has a Camper Van like them, she called yesterday to see me and I forgot to mention her, I feel awful as I know she follows my blog – so thank you for coming Zara you were very nice to us all and Mummy and Daddy especially liked the little pressies you snook in for them, I think they are saving them to enjoy on Christmas Day. ;-)
Talking about Camper Vans, I haven’t seen ours yet – apparently she is called Gertie but Daddy says once he has the time and can afford to get her all painted up all pretty he wants to rename her Eleanor after me! That way Mummy says he will never sell her and when ever anyone asks about her they will tell them all about me.




While Mummy was looking through my little red book she realised that I still hadn’t had my 12 week injections because I’d missed them being here for 3 weeks!! – So unfortunately now this afternoon I have two pink thighs where they have given me my jabs. I’m brave though, Mummy challenged Dr Helen and said not make me cry and she could have a yummy chocolate biscuit! Job done.

Mummy and Daddy got meals on wheels for tea from Penny, who brought lovely Fahitas for tea and some Ben and Jerry’s for pudding. Rachel came to see me after work and brought a cool disco ball and lots of home baked goodies – I think that the nurses will enjoy coming to Side Room One over the next few days….!!
Mummy says she’s talked too much today and thinks her voice is going, and as she's had it before she thinks it might be, big word coming up for me, Laringitis. (Which is obviously mummy’s vocabulary) and instead of singing me carols she has pt my pretty light show on to settle me to sleep – she is looking out for me tonight and I can see she has crossed her fingers and toes for me to be good. I’ll try. But as everyone knows, I’m very unpredictable.


Tuesday, 21 December 2010

Tuesday 21st December- Hello Father Christmas

Mummy steadily kept further away from me today because she is full of cold. I didn’t help matters because she didn’t get any sleep sat up all night worrying about me. I had a very uncomfortable night and I grizzled and cried and tossed and turned. I also had a few startle fits which I haven’t done for ages, Mummy wondered if my brain medication needs increasing, she spoke to Doctor Burns after I was weighed – now a porky 5.26kg/11lb 10oz and I will have a higher dose now.
Hospital obviously agrees with me as I am putting on weight really well.

As my positioning is very important, Emma found me a funny donut thingy to support my head this morning – lucky its not a real one else Daddy would eat it – “Doh nuts, is there anything they cant do?”

By the time Daddy wandered back down from one of the treatment rooms where he has been allowed to stay, she was feeling really grotty and really didn’t want to sit with me any longer. Even Daddy agreed that I was very miserable with the tube in my nose and it was only when I threw up my breakfast that everyone decided that I had had a good go at it but that it needed to come out. When it did it was all blocked and crusted up with dried bogies and removing it made my nostrils bleed – horrible.
I managed to pull my gastric tube out too so they let me have my nose back for a few hours, it was lovely, I breathed all by myself without oxygen.
Eventually though it was time for lunch and because I cant take my bottle very well I had to have a new tube replaced.

I had a visit from Dr Helen who is one of the Junior Doctors and has always been very nice to me. She said she hasn’t had chance to say hello for a while as she has been working on other wards, she likes to keep an eye on me as she was the first doctor to look after me on the day after I was born and spotted that I might not be very well. (She had made sure I was looked after and sent me too the Special Care Baby Unit)

I met Father Christmas today, he must have come early as I’m sure there are still a few more doors on my advent calendar, I’m not complaining though as Mummy says he is usually so busy he doesn’t have time too stop and see children but he stayed around chatting and  I had my photo taken with him.  A lady called Annie wants to use the picture to write in an article about me and my illness to highlight it to people, Mummy and Daddy want her to tell everyone how wonderful all the staff are here at Ward 17 are and how the Hospital is really looking after us. She also wants people to be aware of the local charity CLIMB who support families living with inherited metabolic diseases, because hopefully it will help other people.

My great Uncle Trevor and Aunt Thelma came to see me for the first time too – I got a snowman toy to cuddle and some bright pretty picture cards from Cousin Tracy. They said I was very beautiful -  I could get a big head you know! (although really I have already as, with my large fontanells!!) Aunty Thelma makes lovely cakes – fancy not bringing one! ;-)

Monday, 20 December 2010

Monday 20th December - New blue nose

Me and Mummy
Its -10 outside brrrrrrrrrrrr frrreeeezzzing – it’s about that inside too, as the hospital’s central heating has broken! I had to have two big blankees and a sleep suit to keep me warm. Mummy sheepishly appeared in the doorway today after finding out she had slept through the emergency alarm – yes me again, scaring everyone. She must have been so very tired.
She went home to get more clothes for us as it looks like we will now be staying indefinitely.
I overheard talking when I was pretending to be asleep, Mummy and Daddy said that they are too scared to take me home in case something happens and that the safest and most comfortable place for me is here with all the lovely nurses who help to look after me and keep me comfy, so that means we are here for Christmas, they have asked the nice assistants if we they can save them a Chistmas Lunch.

Gill called today, she said she’d had a bug and stayed away but had been thinking of us all week, she is very supportive to Mummy and Daddy. Daddy got a bit upset talking about the past few days. Maureen called in to give us some extra batteries for the hearing aid, but I haven’t been wearing it whilst my head is in the greenhouse box because it sounds like being in a washing machine.

Grandma came today, she was very sad because it is a year since she lost her Mummy;- Great Grandma Florence, Mummy told me all about what a wonderful strong lady she was and how I am just as brave and amazing as she was, that’s why my middle name is Florence.
Then Karin came to visit bearing a funny cake in the shape of a snowman and a lovely light present. She gave Mummy and Daddy lots of hugs and kisses because she knows how sad they are, hugs and kisses are better than anything in the whole wide world – although they quite like the look of the snowman cake too!
I had a parcel that had been delivered all the way from the North Pole just for me from Santa! Wow – it’s a groovy Winnie the Pooh light show, its just like one I had at home, Mummy said that I can donate it to the ward for other poorly babies to enjoy.



Dr Burns has been doing some investigating to see if there are any magic machines that will help my breathing but because the problem is with my rubbish brain there just isn’t, and there aren’t any magic brain fixing machines either, because I know if there was he would get one for me. Instead he’s suggested that they try putting a funny tube in my other nostril which drops into my floppy throat to keep the airway open, reducing the risk of me stopping breathing if I’m in a funny position. Sound all good doesn’t it – that’s how they sold it to Mummy anyway.
Lovely charge nurse Andrea came to do the wicked deed with Dr Hasha, who insists on calling me Elle, which is all very well and good but I am Ellie. ( I was saving Elle for my supermodel name in the future ;-)) I did not and do not like this tube. It hurt going in and it scratches the back of my throat and I cried lots and made bubbles in my mouth for ages but they still made me keep it in. It looks pants too. They even tried to convince me that it’s a bit rock and roll because there is a safety pin holding it in place – no. Mummy is on my side and wants to take it out but Daddy wants to give it some time too see if it makes things a bit better. Rubbish.
Emma is looking after me again tonight, she screwed her nose up at me when she saw my new nose attachment, but she probably will side with Daddy on this one.