World Of Charlie

Milestones, Good Days, Bad Days, Cake, Tea, Laughter and Tears

My new home is the hospital!

You are starting to think I only post up on here when it’s bad… well I’m trying not to but it’s hard :/

Currently living in hospital, now 1 month in …

Charlie fell poorly on a Monday night 4 weeks ago

After a few grumpy days previously, Monday was good, we’d played with the bubble machine, practised sitting and been to visit relatives, we came home and went shopping using the sling, he loved it

When it came to bedtime after his bath he cried, and didn’t stop; teething we thought, after a while daddy took him for a drive to get him off and when he came back with a crying charlie still; getting so worked up, he was almost hiccuping whilst crying

I picked him up to give him a cuddle and he puked all over me (and my new top!)

He then went… odd; would be a good word, lethargic and almost like he was falling asleep on me, I took him upstairs and laid him on the changing mat on his tummy for him to carry on puking, something wasn’t right 😦 I shouted at Matt to call someone and he called 111 I think

Whilst  he was getting asked the questions I picked Charlie up again and he just went floppy 😦 It happened again, With me shouting at poor Matt to get them to send someone out

8 minutes they said, what seemed like forever, but was actually 5 minutes, our saviour arrived. I don’t recall much, Charlie had perked up a little but was still crying, and the paramedic told us he had to arrange for us to go to A&E as precaution, so an ambulance turned up and I think a few curtains twitched

Charlie was still being sick and floating from sleeping to crying, He was in my arms on way to A&E in the ambulance

Right about now I felt a fraud, feeling that my son was poorly with a sick bug and that I’d get laughed at when we got to A&E for being a stupid over protective mother

At A&E they found us a room and we laid Charlie down on the bed and left us for a bit, did a few obs on him and he was the same, crying/sleeping.

About an hour later one of the nurses came in and looked at him, all of a sudden we were being moved to resus area… machines on, bloods attempted; quite scary…

We aren’t sure what they saw in him but so glad they did. They needed to get the paeds down from the kiddies ward to do a blood sample as Charlie wasn’t giving them a vein,Β it took 45 minutes to get bloods out of him and a line in

It was then they told us they were suspecting meningitis, as about 7 tiny pin prick spots were spotted on him, I have no idea if those spots were there before or not.

So antibiotics on and transferred to ward at about 3am, finally settled, he got a tad of sleep, daddy went home and mummy got about half an hour.

His heart rate and sats were odd but they were monitoring them, but at about 4.30am he became quite unsettled and I asked them to check him again; his lips were blue, body was white, and massive red blotches, they kept talking about profusion

Suddenly it seemed like the whole ward came in the room, several of them ‘working’ on him. I called daddy back; think he’d only had an hours sleep 😦

They’d had to increase his fluids, he looked so much better by the time daddy arrived and I think we were then moved to HDU, which only has 3 beds in.

A lot of the morning was a blur, I think they had ruled out meningitis as the spots were unchanged and not increasing, but they knew they were dealing with a serious infection, of what we had no idea. At this point, they called Leicester Royal Infirmary for advice I think, and possibly for a retrieval; they knew they had a poorly boy on their hands

They tested for Diabetes as blood sugar was very high (21) and also suspecting a gastroenteritis bug or blocked bowel, given his history, whilst they were trying to find the problem, he seemed to settle for a bit.

… But not for long… he started showing similar signs of what had happened before with the profusion and the IV line they were using was failing, they needed a line in quick to get him stable, they just couldn’t get a vein 😦 He needed fluids fast.

They said they needed to put an IO line in, I will talk more about this in a minute, basically its a line direct into the bone marrow, sounds painful? They said it would be quick and painless. We waited in the parents room, scared, not knowing what to think

I think a couple of hours passed before they said we could go back. IO line had been unsuccessful in both legs, he had very sore looking legs where they had used the ‘gun’ yes, gun, on him to try and get the lines in. However he was sporting a lovely IV line into the groin. Finally, they could treat him!

He was very upset, crying sleeping still, I hope he didn’t know what was going on and the horrid stuff he’d been though already in those 12 hours 😦

HDU was now Charlies room, all other kids had been moved out; and the door was shut, this was a kind of message to us

Me and Matt were worried, upset, I had to leave the room, Charlie didn’t know we were there, we sat in a private room (with tissues in; if anyone had read my previous posts) and just numb and worried…

Someone bought us tea and biscuits, a simple task to them but a welcome distraction

It had been arranged for Leicester (LRI) to come and retrieve him, so they could treat for a suspected severe infection possibly caused by a blocked bowel with a view to operating, because bowel issues can become very serious, very quickly.

We had a nurse and a doctor come over for Charlie from LRI, they needed to stabilise him for the journey, I am not sure we knew he wasn’t stable but they talked about sedating him, ventilating him, giving him a muscle relaxant so he couldn’t move, a wee catheter (tube for this was red; more on that later) and then transporting him.

So they got to work… He was planned to go to Intensive Care Unit so by now, we knew it was very serious.

The doctor came to talk to use before they left, They reiterated that Charlie was very poorly, but on his way to a good place, they were pretty sure it was a severe infection brought on by a bowel blockage.

We had had to sign a consent form for the sedation and ventilation with a planned blood transfusion for him whilst en route to LRI.

The thing that sticks out in my mind the most… where they have to write what the benefits of doing all this to our Charlie was one word…

Survival 😦

We went in to see the asleep, sedated, ventilated Charlie before they left, he had skin coloured tape holding the ventilator tube in place, and his face looked like it had a bright light shining on him, except it wasn’t a light, his skin was white, the skin coloured plaster looked so dark compared to him. He was hooked up to about 10 drips, I’ve no idea what for. To save his life no doubt.

I think to date it’s the worst moment of my life; that minute of saying goodbye to him, leaving Β our poorly baby to be rushed to LRI up the M1 to face whatever fate had in store

I’m going to have to finish this another day, bit of a cliffhanger there…

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Long time no post: part 2

Last time I posted in march I was contemplating making some awareness bracelets, I went for it and created!
I sold about 35 and raised Β£255 for the DSA
A huge amount and much more than I expected, in theory I’m still doing them and I am also trying to work on local ones too, yet I did have a break when sales dropped a bit

A few weeks after my last update, my mum passed away, expected but still horrid.
She’s been poorly for a while and when Charlie was born we found out she had cancer again from 12/13 years ago and there wasn’t much they could do, Charlie was due to leave hospital on the Monday and mum was admitted for breathing difficulties on the Sunday
After 2/3 weeks of recovering from this she came home to the care in her house, having to use a frame to walk and constant oxygen, from a few weeks before when she was walking

She was improving and we had a wonderful christmas celebration, she was mobile on a scooter and was able to get to the toilet, chair and bed
Things started going downhill a few weeks before her death and she was becoming more immobile, eventually bed bound. She died about a week after becoming bed bound.

I’m not sure how I feel about things yet
I feel there is so much that has happened in the past year I just don’t know what to think
It’ll come.

I’m incredibly positive about my life and I like to think nothing will get me down

But it’s been a really tough year with Charlie’s diagnosis, birth and operation, then mums diagnosis, illness and death

So what does the future hold?
Maternity leave ends soon. So i have a big decision to make: well it’s already made but I’m putting it off as its a big scary thing to decide.
I’m working on some more bracelets for charity for my website, these will be pink for the breast cancer cause. I’ve been working on these for weeks but my life just seems 99.9% full at the mo, so guessing by my next update; ill still be working on them πŸ˜‰

I’ve given up cake too πŸ™‚
Replaced with wine 😦

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Long time no post

Been a while… Nearly 2 months!

Ill do 2 updates: one for Charlie, one for me

Charlie…

I’m not sure where to start: so much has happened…
We last left with Charlie nearly rolling but not quite. I was showing him by tempting him over and showing him what I wanted out of him. Eventually it worked.
He just did it one day whilst we weren’t watching, on his 6 month birthday, so I think it was about a week of me teaching, and he learnt
Since then he’s not looked back, he then chose to roll into tummy pretty much 90% of his mat time and then goes into sky diving position
It took another few weeks for him to be able to get his arms to the front to reach out for toys: I tried showing him this but he just done it when he was ready
And then another couple of weeks for him to start pushing up with his arms

I kept getting asked by professionals if he was rolling both ways but he was not, I’ve left him to get on with it yet on Sunday I started trying to teach him to roll the other way: he’d got it by Monday
He must’ve been ready

He’s not yet going front to back, but he’d rather be on his front so I’m not sure he’d see the point

Weaning is sort of going well, he’s putting on loads (too much) weight and eating 3 meals a day with his pint of milk. He’s not on lumps but absolutely loves his food: like mum and dad then!!

Paediatrician wanted him in 50centile, and made comments when he’d gone from 50-75 and now he’s nearly 91 centile and the next paed appointment is next week… Oops

The main problem we’ve had is a feeding position due to his lower muscle tone and core strength … He wouldn’t sit in a bumbo, couldn’t sit up in a high chair, despite extra support, wouldn’t sit still on my lap so we have been having to use the car seat for feeding, annoying to me as its very messy on the fabric

We had progress a couple of weeks ago when he sat in bumbo very contently, albeit a little to one side or forward
Today we had even more progress when he sat straight in the bumbo for breakfast
I popped him in the high chair for lunch and he looked fab!! Sat up straight all the feeding time! Picture below from today

We have a tooth!
A grumpy week and a tooth at the end of it
Good news and now I know to expect πŸ™‚

Everything’s going to the mouth now and Charlie is now just toy mad, grabs for anything he can reach; toys hanging from the gym, matts glasses, my hair, wine glass… Beer glass… πŸ˜‰

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Dear friends

Don’t feel sorry for us
He still snuggles into our soft necks
Falls asleep on our shoulders
Snores gently in sleepy slumber
Gets comfort from our cosy cuddles

Don’t fret for us
We get smiles every morning
Babbles and gabbles
Screaming for his milk
100 whoops for ‘first times’
Giggles when tickled
Giggles at nothing
Giggles at blue frogs
Giggles at daddy’s beard

Don’t worry for us
The future looks rosy
The love is strong and secure
Nothing will stop him
Mum and dad will make sure!!

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Part 2

I pressed send too soon on the last one, as I know many of you read this by the email setting thought I’d better start a new one

Where was I?
So he has purple paint under his nails still
Such a wonderful present and card, can’t beat it πŸ™‚ made me cry anyway

I’m feeling incredibly giving at the mo, so many people have helped us recently I feel I need to give something back
I’m racking my brain for things to think of, and I kind of need to stick to something I know or something I’m good at (not much then…)

I was thinking about making awareness bracelets for Down’s syndrome in the blue and yellow designated colours so I’m working on that, I know it’s been done so many times but I don’t see many being advertised in the uk at the moment.
I hope mummies of children with DS would like to buy them to support a charity close to their hearts, and they can also wear the bracelet to raise awareness.
I have loads of blue beads, I’ve ordered yellow beads so when they come ill start making them, give me a shout if you are interested, as long as I recover the bead cost, the rest of the price will go to the DSA, hoping Β£4-5 per bracelet will go the DSA, that’s a good amount for them (as long as I sell some)
From there, i’ll look at localised DS charities as some have different colours, I’ve emailed our local one already just to check its ok

I’ll keep you updated
Click like or comment if you like idea of bracelets xx

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He likes his food!!!

Just like mum and dad, Charlie loves his food
We started weaning on Friday, well a couple of spoons on thursday (brunch time) just to test the water, and all out on friday. Started with baby rice on Thursday, now I thought it was quite yummy as I love semolina (really!)
Friday was sweet potato with baby rice, Saturday was sweet potato and Sunday was cauliflower. All purΓ©ed
Within a couple of spoonfuls of the first time, he learnt to open his mouth for the aeroplane/train/spoon
And he’s like a little baby bird; desperate for food. So I’d call it a success, the only issue is, he’s not quite learnt that he needs to keep his mouth open til the spoon is in there cos if I’m not on the ball, the mouth shuts and I miss my window πŸ™‚
So I definitely feel more confident about it, I was pooping myself about it all imagining he’d gag on every bite

I guess of better read the book for the next step, from Friday he’ll get brekkie too and the week after we’ll have tea too

I’ve been training him on his rolling. He rolled over at a really early stage, totally by accident and he’s done it a few times, but now I’m working on the next step: getting him to want to roll and then rolling
So tempting him with toys whilst on tummy time, then rolling him to his back and leaving him without toys, and bringing him back by gently pulling his arm over so he uses this motion
I now have him rolling onto side alone, supporting his hand/arm so he has leverage and he will then use my hand to pull the rest of him over
If I left him to his own devices he goes into side, arms come up ok- not perfect but ok, legs sort of get in the right position but then he brings legs up at right angle to his body, blocking the roll. So we’ll get there. You can see his brain thinking he wants to do it but his legs just do the wrong thing

Yesterday was Mother’s Day, never could I imagine what Charlie would do for me, he was very clever!

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(I pressed send too soon)
He still has purple under his nails :/

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Terrific Tuesday

Perfect description of the way Tuesdays are shaping up
We have sing n sign, swimming and conductive therapy, all classes are free which is always a bonus and it makes Tuesday ; Charlie’s day. He does so much you’d think he’d be in bed by 6. Oh no. 9pm tonight
Little monkey!! He’d had a chill on the playmat but I gave him some rattles so he was shaking his booty! Think it woke him

Sing and sign is possibly too early for him but it teaches me so much that I can take it away with me to teach him and repetition I find, is the key
Swimming is signed and sung throughout, in a hydrotherapy pool, just like a bath, good for mummy not just charlie, so we both love it, one day he’ll be kicking like the older kids, I was trying to get him to splash but he’s not having any of it πŸ™‚
Conductive therapy was signed and loads of singing too, personalised and friendly, this was our first one this week; I need another week to be able to talk more about it, but it’s looking good
For anyone curious, today they had a sitting game, shaker stick game, clacker game and play with shaving foam

All of this is super for Charlie’s development and if you want me to share more on here to anyone who may want to use any of it, then I can; just give me a nod πŸ™‚

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New piccies

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Techno issues

Sorry for the lack of updates, I was having techno issues so scared me off doing any more

I was trying to get ‘A dad’s view’ onto the menu underneath my pregnancy and early days, and I still can’t figure it out, put me off using this til I get it sorted as I want it all ‘just so’ 😦

I also couldn’t get the app to work on my phone and don’t often sit at the computer so just not inclined to update

In brief though…

Charlie boy has started loads of new things, we are discovering loads of new things about him, and he’s on a mini diet, kind ofΒ 

He is now holding toys with both hands

Constantly moving him arms and hands, like a mini workout.

Lifting his legs upright like he is doing a big fart and them slamming them down on the floor. Other babies I have been watching do for weeks and waiting for our boy to do it. FINALLY!

Watching the cats and grabbing tails if they are sat there, funny but not funny really; one of those I want to laugh but it’s a bit cruel to.

Reaching from toy to toy on the play mat

Grabbing more, rolling more, smiling more, giggling more

After our consultants appointment this week we have had to drop an oz of milk on his feeds as she is asking us to watch his weight, he went from 50 centile to between 75 and 91 centile (comment if you want me to explain this)

She was impressed with his head and back control but wants him to work on his core, so I need to ring Physio

Portage are here tomorrow too, so will update again after that

We discover more about him daily, things he does that we don’t realise he does til something clicks, I see him doing something and then I think he done that 10 minutes ago and it becomes a repetitive movement then, which for me is a positive as it’s a new thing he’s learnt

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Daddy’s View

https://worldofcharlie.wordpress.com/a-dads-view/

If anyone knows how I can get it into the menu on the right, email me, having wordpress woes  😦

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