Sedative Saturday

I have had no sleep all night and neither has Mummy, Daddy came to sit with me at 7am as Mummy was pooped, like me. She had to ring him in the early hours as was worried about me not settling and the only option was to start using a sedative drug to suppress my cough which she wanted to discuss with him, at six o'clock in the morning. I can't shake it, it's so dry but then I keep making secretions and I can’t move them so I keep coughing and coughing. I had a saline nebuliser to help shift anything that was stuck and then Becky the weekend physiotherapist came too. But my cough just kept on coming, over and over and over.
So they have now given me something called Chloral Hydrate* to help send me to sleep. The problem is that this drug has been prescribed as part of my end of life plan; it is also a dependency drug which means the more I have, the more my body will need. Only time will tell whether I can just use this to help get me through my horrid cough or if this is another step away from going home with Mummy and Daddy and seeing Marlee and Lilly again.
The afternoon continued just like the night and my 'chloroform', as Mummy is referring as it (knocks me out) makes me sleep.

*First synthesized in 1832, chloral hydrate was the first depressant developed for the specific purpose of inducing sleep. Currently marketed as syrups or soft gelatin capsules, chloral hydrate takes effect in a relatively short time (about 30 minutes) and will induce sleep in an hour. (http://drugs.uta.edu/chloral.html)

Yawn...Friday again.

Friday again, we’ve lost track of how many weeks now. I’ve been yawning all day* and that’s even with my Caffeine. That just goes to prove that even I’m bored of being here now.
Suze mentioned to Mummy and Daddy last night that she thought the caffeine could be making a difference, they hadn’t really thought about it until now, they were just grateful that I haven’t had an apnea in 18 days. Of course just saying that today could in fact make one happen tonight, but Mummy said if the magic caffeine is really keeping my brain more alert then that’s fantastic, we still can’t go home though because I need too much oxygen. Rubbish.  

It was very sad on the ward last night, Mummy and Daddy have been a bit distant today, lost in their own thoughts, so it was a good job Jane suprised them with a visit and brought amazing chocolate cake, goodies for the raffle from Sian from Weymouth (Thank You xxx) and a fabulous banner to be used for Little Miss Ellie events…it huge! Look out for it soon….

I’ve been pretty pink today although I haven't had a temperature but as such Mummy said I should try and stay out of the box, so I had cuddles with Mummy and then later cuddles with Daddy too. These cuddles aren’t the most relaxing as they tend to involve lots of suction due to me being moved around and coughing a lot. But as Mummy decided to brush my hair and then give me a nice head massage I did eventually relax a bit.

Mummy went home for a few hours but she said the milk was sour and she said the house is sad without me. Although she did say that the house is now tidy, thank you Grandma and the garden is tidy, thank you Mark and Daddy.

I am still pretty unhappy and unsettled, but then what’s new; I guess Mummy is ready to get no sleep so we will just have to see.

*Just a thought about Yawning.....

The causes of yawning are not well understood. Excessive yawning is even less understood than normal yawning, particularly in children, but several explanations exist.

Physiologic Causes

The most common cause of yawning is lack of sleep, a yawn is meaning of lack of oxygen to the brain, with most yawning occurring in the first waking hour and the second most common time being the hours before bedtime. In newborns, excessive yawning occurs as a symptom of prenatal drug withdrawal. Part of the evaluation for neonatal drug withdrawal involves counting the number of times an infant yawns. Infants that yawn more than three to four times over a half an hour period have excessive yawning, the Royal Children's Hospital reports. Children may also yawn more when they're overheated, as a cooling mechanism, Gandorta reports. Absence seizures can include yawning as a symptom, according to "Pediatric Neuropsychiatry" published by Lippincott, Williams and Wilkins in 2005.

Diagnosis

Alert parents often note that their child yawns more than usual. If no obvious cause such as lack of sleep exists, medical evaluation to rule out brain dysfunction, is warranted. An electroencephalogram can diagnose brain dysfunction.

Read more: http://www.livestrong.com/article/265122-excessive-yawning-in-children/#ixzz1F0ZpvPwu

Thursday 24th February - Delivery Day

After a long night for Grandma she kissed me goodbye to go home and get some sleep as Mummy and Daddy came in to start their shift. This involved a cuddle at first, of course and then a lot of suction as my morning yuckies reared their ugly heads. Mummy said it was like going fishing in my mouth for green goo and collected a sample for the lab to check. More on that tomorrow, I know, you can’t wait.

Email dan.prince@live.co.uk to order

A big box arrived from the Trust offices which contained a lot of little purple bracelets with my name on. How exciting. Mummy and Daddy put their pounds in the pot and slipped one on each of their wrists straight away. I tried one on but it was a little big for me.

If you think one would look good on your wrist then please buy one! See below or across on how you can get one, or two or three or four….

There was another delivery today from Mummy’s work, which was some chocolate eggs for the prize raffle. Mummy is going to help wrap them along with some lovely cuddly toys which will be displayed ready for the 1^st of March.

We had surprise visitors at lunchtime, my lovely little friend and x-hospital roommate Lucas came to see me with his Mummy and Daddy because he’d had a hospital appointment himself. Lucas has grown so much, I haven’t seen him since October. He is very handsome, I might have fluttered my eyelashes a little but I’m sure he started first.

He waved at me through the box windows, I said hello for a little bit but I was coughing a lot today and was pretty tired.

Phil at Gateway Peugout with Daddy

 Daddy was invited to go to Gateway Peugout in Crewe who had a cheque for £50 for us. They had an internet campaign on Facebook to try and get new followers to their page and promised to give money to charity if they received 150 in a few days, thanks to Andrea Astles who hinted about it and some of Mummy’s Facebook friends and they shared £100 between our fund and the Cystic Fibrosis Trust, two very deserving charities.

I have been very unsettled for most of the afternoon but slept after my feeds. My Oxygen levels are needing to be high again which is a shame as I looked to be coping ok the last few days and was nearly looking like getting my nose pipes back.

I have been having a few twitchy episodes which which make Mummy and Daddy stand over me looking all puzzled. I need to tell them what’s bothering me but I don’t quite know how to.

Foot note from Editor – Please note that we were disappointed to find out today that the Cronkinsons Farm Charity Evening as previously announced, due to unforeseen circumstances  will not be going ahead after all. However, we have been reassured that they are still running a charity raffle with all proceeds to come to the fund. Sincere apologies go to the fantastic Agency Ad Man Dave, who worked so hard on short notice on some fantastic posters for the event for us.

Ellie's Charity Wrist bands for Leighton Hospital's Children's Ward are NOW available! ONLY £1!


WANT ONE? Or TWO or THREE.....?

• Option A:  Collect from the ward, as of today and pay in one of the collection tins.
• Option B: Order via email to dan.prince@live.co.uk with your address and pay online at www.justgiving.com/ellie-prince  Cost for 1 band plus postage is £1.32
• Option C: Contact Dan if you require multiple orders and he will deal with them individually.

As of the1st of March we will be selling them all around the hospital to celebrate WEAR IT PURPLE!

Wednesday 23rd

Happy Birthday Granddad sending you a kiss!

I was such a good a good girl last night for Mummy, Suze and new student nurse Lisa. I nearly slept all night; I woke at five with a bit of a cough but soon settled off back to sleep 'til eight. Like a normal baby.

Daddy turned up early because Mummy had accidentally sent him a text message (!!) and he was just in time to change my nappy - unfortunately I coughed while he was in the process and managed to decorate him arm, he giggled about it but muttered something about it being gross whilst running off to wash his arm.

I had a lovely cuddle with Mummy where she was on hand with the suction catheter for a bit of snot catching - yum. And then I had my physiotherapy and it started to make me cough and sneeze.

There was a plan formulated today to remove my Gastric Tube and replace it while having a little break with nothing on my face. It was all going to plan until I did a huge sneeze followed by another huge sneeze and it practically flew off my face and had to be removed prior to my 10am feed. This gave Mummy a ten minute window to lather some cream on my cheek and take some 'no tube' pictures of my face.

We finally met Sam who used to work for Annie and she has offered to help continue to support us with the fundraising, she is getting into it personally to by doing a sponsored slim, so Mummy hid all the cakes and sweeties before she came.

Because I have been so good today Grandma is coming to babysit for me this evening while Mummy and Daddy go and see a man called Paul. Daddy says he’s not a man he’s an alien, Mummy says that sounds silly but she says going to see Paul with be a nice change, alien or not.
They checked and double checked their phones to make sure they would hear them ringing if they needed to be called back to the hospital, the cinema is only ten minutes away and as such is in their preferred perimeter for leaving me. 
Daddy said he was very nervous and they kept leaving and then coming back to give me a kiss and then coming back again to check on me. Phew...I was glad when they went actually Grandma and I had lots of gossiping to catch up on.
While they were gone I watched Grandma lots and looked at her pretty purple necklace, I got a bit hot but I was a good girl and took my afternoon tea really well. My cheek was glowing red from where all those stickers had been for weeks, Grandma wondered if I was hot because of little teeth trying to wiggle their way through....i'm sure as soon as she mentions it to Mummy she'll be there sticking her fingers in my mouth.
Of course, Daddy and Mummy turned up, with a particularly pizzary aroma and I got a little tickle in my throat, so they felt needed again and Daddy sorted out my evening tea. 
Daddy said that Paul was a funny alien and he was glad to of had a break,Mummy looked glad to be back as she said she'd been holding her phone constantly hoping it didn't ring.
It's time for bed now, everyone is hoping for a peaceful night.

Still Fighting.

Here I am - still fighting, always ready to tell you about my day. I've been proper sleepy! And aside from a temperature going up and down and up and down I 've kept Ray Ray busy letting her do my feeds while Mummy has been having a back seat day.

She's there, but has been letting the nurses do their jobs so she can do hers, like giving me cuddles, rubbing my tummy and some sneaky toe kisses. 

I didn't get dressed for ages today as I was still pretty hot but I couldn't wait to try on one of my new tops that Penny got on Sunday for me. Brum, Brum.

Mummy has been doing her part time job today, as my fundraiser extraordinaire. She has been conversing with my adverting agency, Dave, sorting out some cool posters to use for Ellie Events. She also had a chat with the managers of Cronkinsons Farm Pub in Stapeley. Thanks to Janice Hope (x), they have heard all about me and said that Ward 17 is a special place for them for personal reasons. They have decided to run a big charity night on Saturday the 5th of March with all the proceeds going to my fund. 

We also had a huge Donation from Grandad's work thanks to clever Karen Plank (x) who has been sitting at her desk with her Ellie placard telling people to vote for me! 

I had a quick visit from Grandad and Nanny Tina who brought some bits and pieces to keep Mummy and Daddy entertained, although with all I get them to do and this event planning I don't think they ever really get bored! Grandad has given us a fancy trilby hat for the auction which Daddy has been modeling - look at him, all gangster

Monday 21st February

In my new dungaree dress from Karin 

Cough. Sleep Cough Cough Sleep. Cough…get the picture. Ugh. I felt really rubbish last night. I felt hot and sticky and Helen checked my temperature, it was really high. My tummy was upset and uncomfortable. I told them all, I let my heart rate get bigger and I cried. They always stop and listen when I cry. On further inspection Dr Burns said that I have a tummy bug called Gastroenteritis, it means my tummy is gripey and painful and I have a runny bum.

They gave me extra hydrocortisone for it now I’m taking it so I slept through most of the day.

Later, Mummy looked at my fingers before I fed and said they looked grey and were cold, so were my feet. She thought it was the cool oxygen blowing around but when they tested my temperature it was high again. Julie said that she would give me strawberry juice and ibuprofen after my milk. She fed me at seven while Mummy and Daddy had their tea.

I was getting full when Mummy came back and so she suggested I’d had enough and then soon I started to blink at her, I couldn’t really see her properly anymore, my toes started to twitch, then my feet, then my legs. My arms started to wave a little and I wasn’t sure what was happening anymore because I felt scared and hot and confused so I cried. By now the doctors went to get some rescue medicine but this tastes funny and I’m not used to having things like that in my mouth so I became sick and even hotter. I couldn’t cry anymore, the sick made me choke in my mouth coming out of my nose I couldn’t breathe very well.

All this time Mummy and Daddy were there, I felt them, Daddy’s hands holding my neck and cheeks keeping the air flowing into my lungs and Mummy stroking my face, telling me to be brave and that I was a good girl. And I was, even when they put needles in to try and give me another canula but I don’t have very big veins.

All they can do now is wait and watch, my heart-rate is still high, my temperature too.

Mummy is typing for me to tell you how poorly I am but she is sad, very sad.

Daddy is drinking a cup of tea, but she is sad, very sad.

That’s all they can really do for now. 

Editorial Intervention

I'd like to share some words of wisdom with you that have been shared to us on our current journey:


"Words, However Kind, cant mend your heartache: but those who care and wish you comfort and peace of mind, May you find strength in the love of family and the warm embrace of friends."




'Life isn't measured by how many breaths you take, it's by how many moments take your breath away.'




We have and continue to be blown away by the help, support, strength shown to us on a day by day basis from loved ones to complete strangers.
You will never truly know how much that drives us and keeps us going.
Our Thanks go out to all of you who have taken Ellie into your hearts.  x

Saturday 19th and Sunday 20th February

Saturday Morning Cuddle with Mummy

I had a very quiet day, but a surprise visit from Nanna who turned up at teatime yesterday, she said she was worried about all of us wanted to check we were ok. She rings a lot but I think she thinks Daddy pretends we are ok over the phone when we aren't.  She gave me a big cuddle but I kept getting very warm and sticky. 

We were a bit boring I think so she left at teatime. 

Mummy and Daddy tend to just sit an stare at me a lot, or hover over me. I have an annoying dry cough at the moment its left over from by infection.  I'd not settled since my 4am feed. Mummy had slept a little in between my coughing fits but the out of hours physiotherapist had to come to see me in the morning. I slept for most of the day but then again had to see the physiotherapist later in the evening. Mummy waited for me to settle but went home to catch up on more sleep. She rang to check on me a few times before finally sending Daddy and me goodnight kisses.

Sunday Mornings are always quieter, there aren't as many staff popping in and out. I woke up to find my cough is still here and although Daddy was able to clear my yuckies the cough has dried up and makes me sore and fed up.

I coughed all the way through my breakfast which in turn made me a bit sick.

I'd slept well though overnight for Daddy, Dr Burns says that normally when you are asleep your body is in a different state and because of this when I did sleep I was fine, I was given strawberry juice and nurofen which helped my cold but I still needed lots of Oxygen  to be comfortable. 

Daddy's friend Nick from Shavington Chippy turned up with his lovely wife Jay and their little baby boy, Blake. Nick is going to take part in the Triathlon which is nice of him. They had read on he blog about gifts for the raffle and brought spare clothes in for the ward including some good quality new clothes for Ellie Bay which Mummy will add soon.  Grandma came to collect the good clothes as she took them to try and sell at her next coffee morning in Tarvin. (Saturday 12th March - 10 - 1pm at Tarvin Methodist Church)

Mummy had been doing some tidying at home and had been treated to some lunch by Karin so came back to the ward with her for a while. I woke for a little bit to see her but am feeling so grotty that I didn't stay awake long. 

Daddy had done a good job looking after me but I still like it when Mummy comes, she said I was looking a bit red and when they checked my temperature it was 37.9 which is lobstery for me. More drugs for me and then back to sleep. More watching for them now. My Oxygen requirements are very high. It's very worrying for them. I am just happy to be relaxed and asleep. 

Friday 18th - Cakes and Bakes

I had my Adrenal Function test today with new Dr Tabitha. She put some magic cream all around places she thought she might be able to place a canula, in my arms and my feet this made sure the area was numb. She gave me some strawberry juice before putting in a special pretend hormone to stimulate my adrenal gland to see how well it works. They then had to get the blood samples and then drew blood at different times throughout an hour. The results came back pretty quickly this afternoon and my adrenal glad isn't performing as well as they would like it to, they don't know how long this has been the case but potentially if they can give me hydrocortisone it may help my body fight infections better. 

Mummy thinks that Canadian Karen will be pleased that we have had the test and she and Daddy are pleased that there are still things that can be done to help keep me comfy.

 

Look at all my teddies watching me sleep! I was sleeping when Claire came to drop off the cheque from UK Fuels, she was only here for a few minutes when Daddy got the tissues out, she had warned Daddy that she would cry. When people come to see me in real life at the hospital I think it is difficult, Mummy and Daddy have adapted to seeing me looking poorly; being so dependant on all my drugs and the box. They are surrounded by poorly people all the time and listen to stories from other Mummies and Daddies who have poorly children like a lovely lady called Jax and her boy Ki (Hello to you I hope you are ok today xx)

But for other people I guess it can be very upsetting. I think I looked ok today, I have some lovely new sleep vests from Rachel to wear (purple of course) and I have nice pinky cheeks. The downside is that my O2 levels are very high when I sleep and eat. I get very sweaty in my box and leave little Eleanor arm shapes on my sheets, yucky huh?

Mummy was invited to say goodbye to Agent Annie in a big boardroom with her worky people, Mummy met Sam who is doing a sponsored slim for me and lots of other nice people who have been very generous. After making her cry by reading a funny poem they presented her with a surprise. Instead of buying all fancy champagne and chocolates which Annie really deserves they put pennies and pounds together which she is donating to my fund. Then she came up to see me and Daddy to say Goodbye. Hah! We got a picture too. Big Kisses Annie

                                                                               We had a lovely donation from Helen from North Wales and some of her endurance baking work colleaugues, Rhianwen and Linda, They raised £128 in baked goods, 

Big Diolch i bawb chi troffers gacen fach yng Nghonwy Cyngor! Ac Da Iawn i chi guys!  

ONLINE AUCTION

STARTS 

on ebaY

 Tuesday 1st March - 8pm

to celebrate WEAR IT PURPLE for Ellie

Please note all Items are sold as seen with no return, replacement or refund policy, they have been donated by individuals for charity and are either new or in best possible condition as described.

Many Thanks and Happy Bidding knowing you are helping a really good cause.

Thursday 17th February

 

Mummy looked a bit odd today, she had frowny wiggly lines on her forehead she said that she hoped no one would pinch her as she might cry. She said she didn’t know why, maybe it’s just the hospital. She never really liked hospitals and now because of me she lives here.

'New' Emma and Jenny looked after me last night, they both looked pooped after putting up with me all night but said I’d been good, Mummy isn’t sure if she believes them because I made my monitors beep as soon as she came in. She says that I know when she’s there and like to cause a fuss just to show that I am the boss. Well, I am aren’t I?!

When Mummy saw me I was in a different sleep vest and she was worried I’d been sick but Jenny had just been playing dress ups in the night. Jenny says that I am a good wee’er! She says ‘blimey you get through some nappies!’ Daddy says I’m a Princess and I can get through as many nappies as I want and so I do, I had a big poo all by myself this morning specially!!

My agent Annie came to visit today, she was sad because she leaves the hospital and her job so had to say goodbye, Mummy has asked her to stay on as my agent and in return says she can have a free visitor pass to see me and chocolate or biscuits when she comes in the future. Somehow she has avoided being photographed she is very sneaky. ;-P

The doctors came in to take bloods and put in a canula in my foot. It made me cry and then Mummy got a bit wobbly because Daddy normally does any of the needle stuff. She was holding my hand and stroking my face but she got all fuzzy headed and needed fresh air. Sometimes she gets a bit red and blotchy in the face and has to hide from the hospital staff coming in and out, she says it sounds silly but she misses having privacy, even though everyone knows what’s happens here because of the blog, its different telling people bits rather than letting people see everything.

I had some lovely pressies today, a magic Little Miss Sunshine torch to play with tonight when it’s dark. Rachel brought a beautiful picture she made too, she is such a clever girl, Mummy has very clever and talented friends!  




My leg has been hurting lots tonight, and after my bath I kept crying out, Dr Tall came to see me and thinks maybe ,my phsio hurt me a bit so I have had a little drug cocktail, before I go to sleep.

My Wavy Locks!

Mummy spotted my hair is growing and said it is lovely and fluffy, that it looks curly like hers was as a baby. She thinks I lok a lot like her as a baby too although everyone says I look like Daddy, what do you think?


 

Wednesday 16th February - Sleeping Beauty

I had another good night, with Jenny and Mummy and Daddy left to take deep breaths and sleep well. They look a bit brighter from doing so and then Mummy took over at the helm with Emma helping out too.

Mummy thought she’d be lonely today and carried on sewing while I slept. Bev Curly Bun popped in, and then Zara was passing and said it’s the first time she’s seen me with my eyes open and said hoe pretty they were. That’s nice.

I had my physiotherapists today and as well as being tapped they decided to stretch out my legs and it really hurt, I cried a bit but they gave me a rest and then tried again. Mummy said she would try and arrange for me to have a warm bath maybe and then she gave me some massage.
I rested and slept lots today, Mummy said I look like Sleeping Beauty in my glass box.

There are still issues with my feeding. The nurses last night thought that the volume I have might still be filling me up too quickly, which bloats my tummy and pushes on my lungs. This can then cause me to struggle to breathe and in turn makes my monitor bleep. And as you know – no ones likes that.

My bed has been lifted to a 45 degree angle; it’s like sleeping on a mountain slope! Ray Ray strapped my box so that it doesn’t start to slide down the cot and bash my head! I have to lie with a roll under my neck to keep my airway open, a roll under my legs to keep my hips straight and now one under my feet to try and stretch them out.

There is hardly room for me in my cot now with all the towels, blankets and teddy’s!

Mummy and Daddy kissed my toes before they left; it’s the only thing they could get at.

Tuesday 15th February

The Heffalumps are coming....

Mummy came to see me this morning after I’d spent a really quiet night and been a good girl with my special Aunty Jenny. She is a member of staff in the ward but has been my friend since I was four weeks old when she gave me my first ever bath. Jenny spent the night looking after me so that Mummy and Daddy could have a rest. She rubbed my tummy and changed my bum and she told me lots of stories about her grandson Ellie and her special angel husband and now we have secrets just between her and me.  Of course as soon as Mummy appeared I started to feel a bit funny and started to cough and splutter, I can’t have her think I don’t need her anymore. Overnight I had gone from having the funny watery Diaorlite, to milk and water and then just milk, and they thought the Milk may be to blame for making me cough. Mummy talked to slim Fast Plan Kath and they agreed to try me on a different milk, its called Pepti Junior, it’s a special milk where it has been broken down to make it easier to digest

Daddy was out running and so by the time he got back for breakfast I was back to normal, ready to be weighed and then for my physiotherapist appointment.

There is new stuff in my room, big lollypop sticks they come at me now with these sticks and the suction tube because I’m sneaky and keep sticking my tongue up into the roof of my mouth, I would be funny if I wasn’t choking at the time.

Daddy sat with me while Mummy went home to do washing and catch up with the lovely Purple Heart, necklace making wonder that is Amy. She came back with cheeky chocolate crumbs on her lips…what’s that about??

I have been keeping Daddy busy coughing again but been wide awake for a change and getting all hot and sticky in my box.  Julie has been in and out peeping through the window to check on us. When she’s not too busy rushing around, she makes Daddy cups of tea like some of the other nurses do to keep him hydrated and awake.

I had cuddles with my bunny this afternoon, she’s so soft and cuddly, it doesn’t make up for not having Mummy and Daddy cuddles though, maybe I will have some later.

Its Valentine's Day!

Pink Lady Rachel made some pretty hearts for my box, Mummy and Daddy bought me a heart balloon and Mowbray appeared with special pink heart just for me!

I have been awarded a Superstar Certificate today, about time I’d say! Mummy coloured it in and gave Hello Kitty a purple top of course. 

I slept right through last night for Daddy, and only woke while I had my breakfast at six o’clock.
My sheets had to be changed which is quite hard work. All my teddies have to be evicted and we need lots of pairs of hands to sort out the mess, one to lift the box;(Daddy) one to lift me; (Mummy, so I got a sneaky little cuddle) and one to do the sheets. (Helen Eyebrows) (Sorry Couldn't resist - everyone needs a special name) 

I was visited by medical students today, told you I was special, they all looked very nervous because Dr Burns was observing them and they had to look at how I breathe. It was very interesting and both Mummy and Daddy felt clever because they understood everything they were talking about. But then they understand a lot about me and they have learnt lots of hospital jargon now too,.
I haven't been good enough to leave my box, in fact throughout the day I have got a bit more poorly, being sick after my lunch while Mummy and Daddy were feeding me. My sheets had to be changed and Mummy nearly had to change her top as it was all over the place. 
After I'd been sick a big bit got stuck in my throat and made me choke, Mummy recused it with the suction but by then I was feeling really horrid. I managed to sleep it off for the rest of the day and I had my antibiotics for the 7th day running. I get a slightly longer course just to keep the infection at bay.
Mummy and Daddy had a good chat with Andrea Polkadot who runs the whole ward. The ward is very very busy but she said that she would try and get us some extra help while I was being so poorly. Hopefully I will be getting someone to sit in with me over night while Mummy and Daddy get a rest. 

They had a little break at tea time and went to the shop, when they came back they said they have been Ellie poster spotting and seen them all around the hospital. Helen Eyebrows fed me while they were gone and accidently spilled my milk so my sheets had to be changed again. And then Daddy and Mummy went to have some tea and when they got back I'd been sick again and more new sheets! Dearie Me. Now I have had to have Diorolite again, water, sugar salty stuff, to stop me being dehydrated. Yuck. Still, whatever they think is right to stop me getting worse.

Sunday 13th February

It all happened yesterday while I slept– Grandma’s Coffee Morning was amazing, a great family affair with Uncle Trevor, Aunt Thelma, Big Cousin Tracy, Alan,  Rachel, Phyllis, Jenny and Becky and many more all (see Fundraising Pages) beavering away to make it such a success, and raising £761 in the Process!!

                                                                                     And then this morning, Sian and Laura went for a run in the rain all around Llandudno for me, a whole 10k which included going up to the Great Orme, I hope they didn’t cheat and get on the tram, hee hee!

I had some post from lovely Wendy Shaw today, she’d posted me her medal from the Thames Trot, and it’s very fancy!  I’ll never get to run, so she has run all those miles for me!

                                                                                       I think I let Mummy sleep for about forty five minutes last night. She joked today about starting an insomnia club on Facebook for Mummy’s who are up all hours and would like to have some company! Not that Mummy would have time up down up down attending to my every cough and choke and splutter. My monitor goes up and down too. Last night Mummy had to watch my oxygen levels fall to 17% which really scared her, but she had to deal with it and that’s that.

By mid morning she had left to go and get some sleep and Daddy had to help get me back in my box, slowly over the day I have been struggling to breathe. The next question is, what happens next, what if I’m in my box and then 100% of oxygen isn’t enough anymore – I think that then is will be the beginning of the end. 

I think that’s how it feels at the moment.  

Mummy and Daddy have been caring for me so well but had to put their hands up and ask for more help, just while I am like this, needing so much extra care.

Saturday 12th February - What is 'tired'?

Dictonary definition is :-

Tired, exhausted, fatigued, wearied, weary  
suggests a condition in which a large part of one's energy and vitality has been consumed.

Tired is a word that Mummy uses when she describes me. It is the redness around my eyes from the tears that fall when I can’t get to sleep. I’m tired from breathing so hard and trying to cough but failing; tired of having a sore throat from the suction tube, inserted to remove the secretions that make me choke and reduce my oxygen. My tummy is tired and sore from wretching and losing my milk over again.

I’m tired of; being shifted around like a little sack of sugar; tipped from side to side to get an aspirate from my tummy to check my gastric tube and the sighs and sorrowful looks and the shrugs.

What is exhausted?

Well, that’s Mummy and Daddy everyday. But that’s another story.