Wednesday 19th January - Grizzly Girl

Too late for Jingle bells

If Sleepy was in my picture dictionary, I think I’d put a picture of Mummy next to S. Although she did managed to get out of bed by 8.30 today to see me and Daddy but we had done just fine without her overnight (although I did keep him up late). I like looking at Daddy and now the nurse have taken the back off my cot he can peer at me upside down.
When Mummy arrived she helped to wash me and evicted the eye boogers and nose crusties that crawled in overnight while I was sleeping. 

Mummy and Daddy were very quiet today, even with my hearing aid in and on and ready to hear I didn’t hear much for ages except big sighs. Thankfully Carole was chatty today and Maureen came to see me with a little green bag. (There’s a song in here somewhere) It was full of jingly things for me to listen to. So she sung some funny little songs and shook and clicked, clacked, rustled, rippled, jingled and jangled. How nice, it made me sleepy after a while, listening is hard work when you aren’t used to it and as I only have one ear it works doubly hard.



http://www.ecdcs.co.uk/index.htm



 Maureen works with East Cheshire Children’s Deaf society; they help  children and their families coping with hearing loss. Here is a link too see what they do. And in case you need it, or want to pass it on to someone you know….

http://www.ndcs.org.uk/

Two lovely ladies came to see me today to give Mummy and Daddy a chance to leave my cot side and get some fresh air, Debbie and Liz from Treetops Hospice in Trentham. http://www.donnalouisetrust.org/

They came to learn all about me in order to sit with me while Mummy and Daddy left me. One problem is Mummy didn’t want to leave me. Not after yesterday. She said that she would put her picture in my dictionary under A is for Anxious when she thought about leaving me! So instead poor Debbie and Liz they had to just talk. Grown ups are so boring, all they do is talk. I hope Mummy didn’t scare them off. They were talking about a care plan for me. So Mummy is working on something on the computer tonight after she’s helped me with the blog.

One you nice bloggy people have been asking at your work about fundraising, yes you Claire! She has arranged a dress down day at work charging everyone a £, I don’t know how many people work where you are Claire but that sounds good and really simple way of raising a bit of cash. She’s also busy on something else top secret…more soon….

Mummy has been a lovely arm chair this afternoon and I had a successful cot – arms -cot transition with no misdemeanours (Another special Mummy word from the word of the day toilet paper) which included a good hour of sleep. Then when I was back in my cot Daddy gave me a massage (unsuccessful outcome again) and my belly got really hot as I’m still waiting for a new tummy drug to work that Mummy refers to as Pixy Dust (Sodium Picosulfate*) apparently according to some of the nurses it’s like dynamite, not so as I’ve noticed today as nothing has budged me.

Daddy sat and watched Batman with me while I tried to fall asleep after my bath. He and Mummy are a little on edge as I have been coughing and making bubbles, dribbling all over my new blankee from Grandma. I’m very grizzly. I hope I fall asleep soon.

Mummy has just had a mental spasm and finding out that she's deleted all of today's photos (including pictures of me and my eyelashes), coupled with me non stop coughing and sputtering, overtiredness, and general irritability which is very unbecoming but perfectly acceptable under the circumstances. (Yes, Absolutley, totally agree)

• http://en.wikipedia.org/wiki/Sodium_picosulfate

Tuesday 18th January - Cold Hard Truth

Got My Number?

I said goodnight to Daddy who looked convinced that I was going to sleep well tonight, Mummy had to check some internet things and then she settled down to sleep on a very flat bed. But I kept awake for ages, and ages. She decided she might as well feed me by the time Red Hair Rachel came in to sort my drugs out, but because I was kicking my legs up and down (as much as I can – my movements are very limited) and drawing my legs up to my tummy. Its wind or pooh, sorry to be so blunt but when you’re a baby this is pretty much a big part of your life. I’m not sure which but it really hurts, enough to need a tummy massage, which I got before my milk, thanks to Mummy.

It wouldn’t go away this pain and try as I might to sleep, I just couldn’t, sometimes the pain would take my breath away, literally, my oxygen monitor beeped, so Mummy had to watch over me again. She likes to know that I am safe, and that’s usually when I am happily snoring away in Ellie land. Eventually, several massages later my tummy eased long enough for an hour of sleep before 6am breakfast. Mummy was awake by now and Bath time Jenny brought her a cup of coffee with lots of sugar in.

I was a bit sick with my feed, my tummy was just too full but I had to wait until 10am before I could have another magic pill again. Well, it’s not a pill any more; it’s a long straw, which shoots a cool shot of goo called an anenenenenmanana, or something? Mummy can’t say it but giggles when she does; she and daddy have silly jokes. Anyway, it seems to hit the spot.

I believe it’s known as an explosion, so now I have an excuse to use my new bedding made by Grandma, a pretty blanket and matching cushion, Clever Grandma. I got to wear my new outfit from Emma too, I wonder can you have too much purple or am I pulling off hippy chique?

Daddy went to buy trainers, at last today so Mummy tidied up to try and impress him, I wonder if he’ll actually notice as our room here is so full, if we did ever leave then we’d need a removals lorry I think.

I saw two of the Home Care team today, Bev Curly Bun (The Boss Lady) who is putting together a special passport for poorly babies like me to help explain how we all like to looked after to anyone new as we can be quite complicated. I am proof of this!

Home care Chris came to see how I’m doing and as usual Mummy talked her ear off, it was good though as she’s found me a different Oxygen attachment which means I can trial being on slightly less than 1 litre and go to 0.75 of a litre which a few to finding which amount is most comfortable in case I was to (whisper it) go

h o m e. Especially as I have been nine days clear of that rotten bag and mask.

I had a lovely afternoon with Grandma and Daddy with Mummy somewhere looking sleepy on a chair and bobbing in on the conversation every now and again when she cold muster the energy. We listened to calming songs and Mummy was very excited that some pretty cards had arrived; they are my business cards, look at me! They tell people how to go on my blog but also get a pretty picture with me on it. Mummy says she loves stationary but is so mega impressed with these cards they are all presented all beautiful and look all professional. I think sometimes she likes to do worky things as it reminds her that she can be very efficient and clever sometimes.

Grandma went home and Gill my speech therapist came with a funny pink cup, she had every intention to show us how I might enjoy the odd sip from this cup. Daddy showed her how I sit up like a good girl on his knee and all was going well. But then I started to cough. Gill was concerned that I had a weak cough. My cough continued and then stopped. I coughed again. Mummy lifted me off Daddy’s knee quickly and put me back in my cot. I stopped coughing. I stopped everything. L

I think it was about sixteen minutes before I started to breathe again on my own, sixteen minutes is a long time when people are stood over you willing you to breathe, poking your feet, pinching your toes, calling your name, calmly but hurried.

Checking monitors.  Checking clocks.

Eventually instead of eight people around my cot there were four and then there were gentle kisses on my head.  Then there were three and notes were written and papers put away. Then there was just two: The two that are always there, everytime; the two that will ALWAYS be there. Two people that love me so much they go through this time and time again because they love having me in their life no matter how hard it is, they love me and want me to stay.

Tired out after a long day

(Editors Tired End of Day note:

So if you think that we've gone all fundraising fanaticical, we need to, it's an escape, it's a vehicle, an obsession, to let everyone know how much we love Ellie, pure and simple.

 If you think that’s a good enough reason to try and make a difference then your one of those amazing people who are fundraising too. So Thank You, because it does make a difference. Not just to us but to the other parents and their children (who may be you) who will benefit at Ward 17. )

Monday 17th January- Are you following??

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Yay! Mummy’s back and although Daddy did very well yesterday  without her she still managed to spot a couple of things he didn’t do yesterday, I think she needed to or else why does she need to be here if Daddy does such a good job?

So apparently I missed out on my bath yesterday, good job I wasn’t out playing in mud then isn’t it.

I got to wear the matching outfit I wasn’t wearing yesterday, ‘Oh Boys’ Mummy said, fancy not putting the right outfit on. (Pls to see Puff ball Skirt as per gift from Nanny Tina)

 But Thank You Daddy, because you were brilliant really, it’s just that Mummy came in with her head still not on the right way round being a bit grumpy!

So then, weigh in, Ugh….oops…I’m still putting on lots of weight, now 14lb 7oz/6.58kg. I am now on the 50^th percentile on my charts for weight and height, which means I am as fat as I am long. I am a ball.

Not bad going for someone was on the 0.4^th! Although the bad news is that Slim Fast Plan Kath is dropping my high energy feed at tea time now so I may still get hungry.

Mary from Audiology appeared this morning, with a little brown parcel, my new hearing mould, she was fast sneaking it in and then I started to hear stuff again for the first time in ages. I heard Gloworm singing and Mummy singing and Daddy talking and Mummy telling Daddy not to sing.

Every now and again I wake up and I wonder …ooooh what’s that noise…it makes me cry a bit but then I remember where I am and who all these faces are staring at me. I saw a new face today, well, a face I’ve not seen in a while, Nurse Becky was looking after me today, she mentioned that her friend, the animal man has been talking about shaving his legs for charity, so I thought by mentioning it and saying how much we would appreciate it, would give him a friendly little push. ;-)

Talking of fundraising, why wouldn’t I,  it’s close to my heart - Mummy has been asked to ok some t-shirt designs for David’s bike race today, he’s also made a logo to put on Facebook, how cool is that? I feel like a proper celeb! Mummy has updated her status and so has Daddy – you could too if you want t spread the word!

We have also had a visit from Mummy’s aqua friend Emma who as well as treating me to a fancy little outfit, (see tomorrow’s blog as shall be wearing) has brought in lots of goodies for the raffle. Emma is a (shy) singer and shy at having her photo taken, so no pictures of her today but she said that she is in the throws of possibly getting a classical musical concert together for later on in the year!!

Grandad and Nanny Tina came later in the day bringing chicken soup for Mummy, how thoughtful. I think she’s back on the mend now for any of you concerned but she definitely won’t be having a chicken passanda for a while.

I had my bath while they were here, as I like to show off my big fat belly! Grandad has a poorly back though and he had to sit down to watch as he hurts to stand for too long.

Get better soon Grandad. Xx

Becky talked too me while I had my tea so that Mummy and Daddy could have theirs in the parents room. They weren’t away long though as there is nothing to do in there except sit and eat. There is no television, no radio, no clock no kettle, there were once but not anymore. Daddy was a bit miffed today because his weight watchers chicken fajitas wrap went walkabout. How rude.

For the first time properly that I could hear I got some lullabies to help me sleep, other than feeling Mummy's good vibrations before I had sound! One was enough because my hearing aid has been on all day and after a while I really want my peace and quiet back, so a big yawn and off to sleeps for me. Night, night.

(Night, Night Beautiful Girl - Sleep Well)

Sunday 16th January - Mummy AWOL

When I woke properly this morning Mummy was still no where to be seen. Daddy was asleep in the chair and when he woke up I heard him saying to Carole that Mummy was sick and had had to go to the flat to sleep. So it was just me and Daddy all morning, I was a good girl for him, because he doesn’t want two of us poorly at once. He washed and dressed me in pretty clothes and we had kisses and cuddles but when I sit up I get very coughy, so Daddy had to use the suction machine and then let me have a rest.

Grandma and Uncle John came this afternoon and Grandma was talking about cakes and coffee mornings. She’s brought some pretty bracelets to show us that Phyllis had made. She brought a copy of the Chester Chronicle with a repeated story from Wednesday’s Crewe Chronicle, but Daddy noticed that they hadn’t made the amendments we had asked for which meant that information was incorrect about my illness. They didn’t put a link in for the fundraising either so Daddy was very disappointed.

Then my friend Becca came with her Mummy and Daddy, I was a bit sad because I know Mummy would have liked to have seen them, but when Daddy texted her to see if she was better she wasn’t and she’d been sleeping all day. That’s not like Mummy at all, I know she would rather be with me and I think she would have been all lonely in the flat, even if she was sleeping. Daddy wouldn’t even go and see her in case she was infectious!

They chattered about lots of things and I heard Becca chattering too. I didn’t say much because I missed Mummy. Amy held Becca over my cot so I could say hello and see her posh purple cast. She had her afternoon snack too, she’s very clever letting her Daddy feed her from a bottle.

Daddy didn’t sleep too well, the ward seems to be very noisy which means its busy again, he was up watching me a 5am, my new awake time and then fed me my breakfast, I wonder if Mummy will be back today, I miss her.