Sally's World

Hello, remember me? I'm that person that used to blog every day, catch up with all your blogs and offer some sort of support (I hope).

For the first time in what seems like forever, I have accosted Dave's computer and have a few moments to catch up and let you know whats going on in our insane lives...

I'm working ridiculous night-time hours, which seems ideal for an insomniac...but I'm not sure when I am supposed to catch up.

Deion is finally getting his botox in his thigh muscles, this should ease the pain until his operation to put his knee caps back down in the right place... where the thigh muscles are tight, all the exercises he has to do are pulling the kneecaps up, rather than stretching the thigh muscle...ouch!

Deion has had some special tests to see how the swallowing is going, his swallow is now unsafe with bread/cakes, anything of that consistency as the tongue is not holding his food in his mouth, so it slips down and he aspirates...hence all the chest infections.

Also plain fluid goes down too fast with the same results...so he has to have thickened drinks.

The doctors are talking about giving him a gastosteomy feeding tube so he can have enough fluid and calories safely...although this terrifies me because its all a bit "de-ja-vu" I am obviously happy to do whats best for Deion. Deion however is refusing, because the only person he knew with a gastro tube was Aaron and no matter how much we are trying to reassure him its different, he is scared. He also, very intelligently pointed out that we wouldn't tell him if he had an illness like Aaron's anyway...which is probably true, not sure how to reassure him really, and that kills me.

We get Deion's neurology results on the 10th Feb...so wish us luck.

I am feeling a little under appreciated to be honest, this may seem selfish and shallow compared to Deions dilemmas... I wonder why everything I do goes unnoticed, yet I am supposed to celebrate everyone elses achievements with gusto... I don't really know how to keep up with all the housework, cooking, cleaning, appointments and work these stupid late night hours. Of course, everyone still expects dinner on the table, dry cleaning collected, food in the cupboards and ironed clothes!!!!

Maybe I can arrange for the fairies to come in and do it while everyone is asleep...well, everyone except me of course, because I shall either be sitting in a police station somewhere asking a twelve year old why he thinks its okay to be stealing cars at 2 am/thumping his mum/carrying knives/smoking cannabis...or else I'll be trying to catch up with the bloody ironing!!!

Enough about me!!!

Jordan and Robyn have just had a few weeks of intense studying and exams, I think they have come through it relatively unscathed, if somewhat tired....mind you, now they have less study...maybe they can help out more round the house....sorry....just a thought!

Deion had his first secondary school report....8 distinctions, 6 merits...way to go Deion...a total star, that's gonna cost us!!!

We were snowed in for Robyn's parent teacher meeting...but she was so keen for me to see her teacher and be impressed that we trudged about four miles through the snow, met with the teacher for about 5 minutes...because of course he has no worries and thinks Robyn's a star, then we trudged four miles home....tell me again why I couldn't have that conversation on the phone???

Jordan and I seem to be bickering a bit at the moment, I guess its because he is in that in-between stage, he thinks he knows it all and is a grown man at the ripe old age of 16... "I'll be able to drive next year you know mum"... (that'll keep me off the roads anyway!)... and I still think he's my little boy... I must learn how to let go. I just see so much scary stuff out there, its not that easy.

The house is slowly getting sorted, we are 'nearly there' on most things... bit of tiling, bit of painting, a few shelves to put up...we'll get there, I'm just glad to be in and that everyone has their own space.

Okay, I suppose I'd better go, I'm not sure when I shall get a minute to get back on the PC.

Thanks for your e-mails and comments checking I'm OK, I really appreciate it,

Love you all

Sal xxxxx

You will not believe what happened to us the other day...actually...sadly, you probably will. We were not allowed in a shop because Deion may have broken something while in his wheelchair...apparently, kids in electric chairs are NOT ALLOWED. Pushable ones, and buggies are okay, but electric chairs are too much of a risk in the breakable goods department.

Okay,I'll tell you what I wanted to break, and it wasn't anything they were selling in the shop!!!

"So let me get this straight?" I asked in something just below roar level! "Disabled people are not allowed in your store."

"Oh yes, of course they are," said 'thick as shit' store assistant, "just not kids in electric chairs!"

Well,I don't need to go on about the small argument that ensued, and there's certainly no need to repeat any of the threats made (who me?)...

But the manager was called, we were assured that it IS NOT store policy to keep out electric chairs, and the 'thick as shit' assistant got it wrong. Apologies were made, I resisted the urge to tell Deion to drive around at top speed like demolition derby and break everything he could (very understanding of us I think!)

And I know what will happen next, we'll get a letter of apology from head office and some store vouchers, I know this, because it happened once before in another store. I don't want the bloody store vouchers, I want to be able to go shopping with my son and not be turned away because he's in a wheelchair...simple...you'd think! The vouchers will be rolled up and returned with a suggestion of where they should put them!

Okay, I know we are moving ahead, and things are improving...but come on...can we get there a bit quicker please, people are being treated like second/third class citizens here! GGRRRRR!

I take no responsibility what so ever.......

Yes, I'm not quite sure what I was thinking, I was out and simply saw this, thought crikey, that's a bargain, and bought it because I know Deion will love it, he can actually play wheelchair football/soccer in this.

Of course, I hadn't banked on Dave seeing it first and taking out the table lamp, an ornament and almost killing the computer monitor....

I blame his mum, apparently when he was little, she would tell him off for playing soccer in the house and follow it up with "when you own your own house, you can play soccer in it."

I have asked her about this, and she didn't look quite as put out as I would have hoped.

Worst of all, I heard myself saying it to Jordan about tennis the other day!!!

I don't know whether to hide it now, or give them a chance, I guess, I could pack away anything breakable, valuable, precious!!!

You gotta admit though, it looks cool!

Enthusiastic is the word best used to describe Deion's feeling for school, he's had a brilliant week.

The school have worked hard, got the balance just right, and the people they have hired for Deion gel really well with him. They are keeping in touch every day, I couldn't ask for more. The teachers have praised him, his helpers have laughed with him and Deion is relentless in making sure they know they support really bad soccer teams!

The older kids have told him what a cool wheelchair he has (it is cool!) and the lunch ladies have taken a shine to him, he seems to get an extraordinary amount of food, and still come home with lots of change!

Deion is worn out by the end of the day, but still can't wait to tell us about his adventures.

P.E. was a concern for me, but the coach has got the balance right too, Deion is a sort of mini coach, so he timed the kids doing the bleep tests. I think he may have been a little over zealous in his motivational technique, but I'll bet they ran faster lol!

My baby's growing up fast!

Don't worry, I don't mean my husband, although, that would be preferable to the heart wrenching agony I felt when Deion wheeled himself into his first day at secondary school.

I actually thought I was having a heart attack at one point, all the while Deion was saying "don't worry mum, I can handle it." I think I don't like realising I have to let go, and he's my baby, the youngest, the last one.... I don't like to believe I am not as needed as I think I am!

Deion had a great day, he looked so grown up, he made lots of new friends, reconnected with those from primary school. He was full of tales of having his own lift key, a classroom assistant that supports a 'like, totally, rubbish' football team and what he had for lunch.

It turns out that the nervous breakdown and the mild stroke I had were unwarranted.

The pictures make my heart melt, I am a proud mum....here's my 'not so' baby!!!

We had to go back to the school outfitters for one more thing today, and I think I did something silly...but for the right reason (I think!!!) When I was paying, the proprietor said that he was going to give me a discount for Deion.... now, I know what your thinking, "keep your mouth shut, take the discount..." but not me, before I knew it my mouth had overridden my brain (AGAIN!!!) and said 'WHY?'

The guy probably thought he was being nice, but it smacked of pity, no-one else got money off, does a wheelchair entitle you to discount in any other store....ermmm...no!

In my defense, if I hadn't asked, Deion would have. Its hards treating him the same as everyone else is it...big sigh!

Jordan has gone to school to get his exam results.

I'm not really worried (she says as she paces the room and bites her nails), Jordan is brighter than most, certainly left me behind in the school work years ago. He's not nervous, he says he knows he's aced them (note to self, do something about Jordan's confidence levels)

Its a first for me, even though he isn't my eldest, Aaron never took exams, even if he'd still been with us he wouldn't have. His achievements were measured in many other, and quite frankly, more fun ways by his school.

It will be different again for Deion. Deion has already shown some nervousness about his. He's just done the Sat's at primary and he found it quite stressful. He got extra time, there is a system so that depending on disability, extra time is awarded, and Deion can even have a scribe for some parts, and can use his specially adapted computer for others.

But all this stuff is time consuming, so even though Deion knows his stuff, he finds it hard to record it in time.

I've told him not to worry about it now, its three years away (but oh my, how quick that will pass)

I guess its just one other thing he has to deal with.....

Deion has come up with a new slogan, he's very proud of himself, he's been wearing 'Wheelchair Demon' and 'Wicked on Wheels' for a while, and he asked me if he could have a 'skills on Wheels' one.

So here it is, what do you think? This is the first time we've used the gold and silver lettering too.

Lots of people have seen it and ordered it, I love the feedback we get from kids wearing these t-shirts, they are really making a statement, its fabulous.

I was reflecting earlier at the difference of Deion going on to secondary school as opposed to Jordan and Robyn going.

When it was their turn, I stressed about making sure we had all the right uniform and stationary,and I worried about the size of the school and them getting lost because they were used to such a small primary school, but it struck me how different it was this time, how different the things I am scared of are!

While we were in the school outfitters and we were trying on Blazers, we had to consider different things, after all, Deion's going to be sitting in a wheelchair, the blazer has to be comfy for that, not too stiff, a bit longer so he can sit on it so it doesn't bunch up around him. We tried on 12 before we found a suitable one. It took me about a year to explain to the salesman that the trousers had to be slightly longer, as he sits down all day, therefore come up short, (he hates his socks showing).

The bag needs to be bigger and sit right on the wheelchair handles, he has to fit so much stuff in, his shoes need to be easy to take off and on so that his toileting care wont take longer than necessary.

I'll have to make a big pad delivery out of school hours so that he has all he needs and his school friends don't see and tease about 'nappies.'

I need to pick up the months menu to make sure he's eating what is manageable for him.

Of course, Deion wont have the option of taking the shortest route to each class as he has to go the accessible way, or via the elevator. We have to pick up his lift key

We have met the 4 people who will be responsible for all of Deion's personal care and toileting needs. We have met his one to one classroom assistant

The school have ordered the height adjustable tables for his wheelchair to sit under, re arranged every class so Deion can manoeuvre, ordered the hoists, changing beds, cabinets e.t.c

We even have the whole school to ourselves the day before everyone else starts so Deion and all the workers involved can get used to each other.

Then theres Jordan and Robyn's preparation

We walked into the school outfitters, said 'we'll have that, that, that and two of them and left!

Thank you for all Your get well wishes and e-mails, Deion is now fully recovered from his operation. He still managed a smile for me bless him, he's made of strong stuff this one!!!

From This...


To This...


To This...

Okay, I promise, these are the last swine flu jokes, a collection of the best ones that people forwarded to Deion via e-mail and face book. I thought you might like them, they made him squeal with laughter (sorry, couldn't resist)

I called the Swine Flu hotline - all I got was crackling

The doctor asked me how long I'd had the symptoms of Swine Flu.
I said it must have been about a Weeeeeeeeeeeeeek!

Apparently my mate's got Swine Flu - I think he's just telling porkies!

The only known cure for Swine Flu in humans has been found to be the liberal application of oinkment.

IF YOU GET AN EMAIL ABOUT SWINE FLU DELETE IT AS ITS ONLY
SPAM.

Swine flu however, is not a problem for the pigs because
they're all going to be cured anyway!

News Flash .... This just in. The world's religious leaders have issued a joint declaration that the Swine Flu pandemic is the start of the
aporkalypse.

Swine flu has now mixed with bird flu.
Scientists say they will find a cure when pigs fly.

I just heard on the news that "Swine Flu could potentially be a threat to every single person in the world". Well it's a good thing I'm married then, isn't it?

This is not a time for panic. It is no pig deal.

It is a mild hamdemic,don't believe the spam you're getting.

Thank you so much for your messages to us both, you all warm my heart.

A new day, and Deion's feeling a bit stronger, happy to be home.

I am shattered!

I expected to get into bed and be instantly asleep, seeing as I'm totally exhausted, but instead I spent the night plagued with thoughts of 'what if?'

Is this something you all do too?

What if I hadn't got Deion straight down the doctors?
What if I'd waited?
What if he hadn't been cautious and sent us to the hospital?
What if they've sent him home to soon?
What if, What if, What if........

I know it serves no purpose, its a waste of energy, counter productive, but its been haunting me all night.

At the hospital there was no time, I was next to Deion's bed making sure he had what he needed, stroking his hair away from his head, reassuring him....In my own bed, listening for Deion in the next room, I found it impossible to switch off.

I am grateful beyond imagining that he is okay, I know I could be sitting here saying 'if only...' but I can't quite seem to shake the anxiety.

My emotions seem to be a little close to the surface today.....Sorry!

NOW YOU SEE HIM!!!

NOW YOU DON'T!!!

Look at that grin! Deion loved this, at a day at a local museum we learned about animals and how they protect themselves in nature...of course, he was a leopard!

I’ve officially been awake for 72 hours, I past the tired, the irritable, the clumsy and the zombie like state and into manic mode….

I sponged Deion down, got him settled and estimated I had about five minutes before he needed me again.

Seeing as I have been in the same clothes for about 36 hours I ran up the stairs, shedding clothes as I went, I jumped in the shower, no time for a full body scrub, just wash the most important bits, grabbed a towel as I ran into the bedroom, no time for proper drying, lotions and creams, just pulled on some underwear…oops, wrong way round, never mind, grabbed some sweats and a t-shirt, pulled them on as I ran back to the bathroom, squeezed toothpaste on my toothbrush frantically scrubbed my teeth as I located my hairbrush underneath a pile of discarded bedding, caught sight of myself in the mirror. Screamed like a girl…I look like the wild woman of Borneo! Dragged a brush through my birds nest of hair, threw the brush down, ran into the bathroom, spat and rinsed, leapt down the stairs in 2 bounds, back to Deion….still settled. Result! Ran into the kitchen grabbed some bread, threw some butter on it and stuffed it in my mouth as I made a coffee…Deion still settled, a record….so I thought I’d give you an update…

Deion’s temperature is staying around a hundred now, which is much better, he has stopped being sick (brilliant for the poor little guy) he is sipping drinks, but hasn’t really eaten, I’m massaging his achy limbs, sponging his head and keeping him amused as much as possible, and that’s about all I can do, he has a cosy bed on the sofa, he’s dosing now and then, still smiling at our teasing, a trooper.

No time for spell checking…I’m needed xxxx

Deion had a fidgety night to say the least, I spent half the night cooling him down, and the other half warming him up, his temperature was up and down like a Yo Yo. he went through four sets of bedding and five pairs of pyjamas and I have given up with trying to stay clean or dry myself!

Its lovely to see him laugh still, after yesterdays post we had a couple of other suggestions, like, playing this little piggy with his toes (thanks J.J) a few sayings like 'in the pink' and 'when pigs fly' (thanks Pam) or 'theres snowt wrong with you' from a friend up north...too funny.

All good, so keep coming with any suggestions, he's loving it! and as we know, laughter is the best medicine...well, along with tami-flu, antivirals, anti-biotics and pareceteomol. Not to mention mums undivided attention...oops, gotta go, I'm needed!

Poor old Deion seems to be having more than his fare share at the moment. He's been ill over the weekend, today the doctor confirmed he has Swine flu.

I am run ragged, knackered, I need a shower, some clean clothes and a hairbrush, its a good job I'm too tired to see straight, the sight of myself in a mirror may push me over the edge.

In my house, we don't really do sympathy, we do affectionate teasing so we are all doing our best to keep Deion cheered up and smiling.

This involves:

a) Frantically oinking and squeeling at him at regular intervals and asking if he can understand us,
b) Frequently checking for a curly tail,
c) Intermitently showing him pictures of Miss Piggy and asking him if he fancies her yet.
d) Asking if he needs help if holding his drink is hard with trotters.
e) Whenever he farts, asking if he can smell bacon.

Strange as it seems to all you functional families out there...but this is what he needs.

I'll blog when I can, in between the symptoms (believe me, you DON'T need details)

sal xxxx