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!