Sunday, 25 September 2016

These days...

I know, it's not like me to keep my mouth shut for this long.

Unfortunately there is Stuff Going On with Smiler, and to be honest I don't have the brain space for writing - not about the Stuff, not even about not the Stuff.

A very quick catch up - Petal turned 12, Noah's new school shoes are a size ten and a half (going into year 9), the extension is finished (in that it has lights in the ceiling, paint on the walls etc, though no proper flooring yet, just concrete), the new puppy - my puppy - is perfect.

But the Stuff - well, it's big.  So send me your happy thoughts, people, your positive vibes, or clap if you believe in fairies - you know the drill.

And here's a photo of Riley, in case you haven't spotted her yet on my Twitter or Instagram.

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Saturday, 18 June 2016

A fall and the aftermath

"Hi Lucas, it's David from school"

I didn't respond yet, waiting to hear the usual 'Smiler's fine" first, but it didn't come.

There was a certain tightness to David's voice, and although of course the head teacher of a special school is always under pressure, juggling budgets and staffing and LA and paperwork and building issues, he is usually able to keep a lid on it, and generally sounds pretty calm and laid back - but not today.  The distinct lack of immediate reassurance made me stiffen in my seat as all thone dreaded possibilities flashed through my mind - a seizure?  A bleed?  Something else altogether?

"Smiler's had a fall in the playground.  He has two first aiders with him, but it was eight minutes ago and we haven't been able to get him up yet..."

What do you mean, haven't been able to get him up?  Did he hit his head?

"No, no, not exactly.  He fell forwards - well, actually he was pushed by another student, which doesn't really help - but he'said very upset, and he doesn't seem to be able to use his arm...  Everything might all be fine, but I just wanted to let you know what was happening.  I'm going straight back out to him now, and I'll ring back on this number in five minutes."

Twenty five minutes later we met staff and Smiler at the local A+E.  They'd had to hoist him from the ground into his wheelchair as even his favourite adults had been unable to convince him to let them help him up, and he'd been crying in pain the whole time.  It wasn't difficult to see why.

(Excuse the dodgy mobile photos)

Smiler's left elbow has been dislocated and fused in place since birth, and so we've always been used to it not looking like an ordinary elbow, but his right - well, it's hypermobile, but generally elbow shaped.  

But not today.

An hour later an x-ray had confirmed his elbow was not only dislocated, but also fractured.  Unfortunately the A+E we were in couldn't sedate him to relocate it, so ordered a patient transport ambulance to take Smiler and I to the Children's Hospital which would pick us up within an hour.  By the time it actually arrived to collect us, three hours later, Smiler was exhausted by the pain.  Because of his haemophilia he can't have ibuprofen which would work on both the pain and the swelling, so he was only on paracetamol as he'd sneezed out the dose of dia-morph instantly it had been sprayed up his nose.

At the Children's Smiler was dosed up again but struggling still with the pain while the consultants debated whether to sedate him to relocate the joint or put him under a general anaesthetic instead.  By 11pm he had a slot in theater, and as per the usual protocols, an arrow was drawn on the arm that needed attention...

...but Smiler was not a fan.

First a failed attempt to site a canula, followed by a successful attempt to put him under with gas.  Anyone who has had to hold their panicking child - teenager - down, while they're screaming 'No! No mummy! No!' as loud as they can while an anesthesiologist does their bit will know how much that hurts.  Three of us holding him down against the gurney, another steadying his arm while yet another tries to get the canula in - it was horrendous.  

An hour or so later I was called to recovery, to find Smiler dozy but calm with his arm in a cast.  Lots of obs through the night as there was mention of 'limb endangerment' and 'potential nerve damage', partly because the joint had been out for so long before it was relocated.

Next morning the orthopedic surgeon who'd got it back in checked in with us, letting us know that although the joint was technically back in place it was very unstable, and most likely has always had similar construction to his left elbow.  So, although it wasn't quite dislocated like his left, it was very much on the verge of it all these years, probably partially dislocating every time he straightened it out but clicking itself straight back in again.  Turns out that the most surprising part of all this is that it took so long for it to happen.

So now we're home.  He has a follow up next week which will include more xrays, the cast will be on for three weeks followed by a splint which will restrict his movement so that hopefully it won't pop straight back out.  By then we'll have more of an idea what comes next, which the consultant has warned may well be more surgery to position pins and plates to keep everything where it's meant to be.  Anyone familiar with conversations with consultants will know how vague and non-committal they tend to be, which I find hugely frustrating - I'd rather know the possibilities so that I can do some research, get my head around it.  By my reasoning the fact the Big Bone Cheese said he thinks it's highly likely that this will not be the end of it means it's pretty much a certainty, but exactly how big a deal this is going to be, I don't know.

Keep your fingers crossed for us on Tuesday - instead of going out to lunch to celebrate our 14th wedding anniversary, Mr and I will be at an outpatients fracture clinic with Smiler hoping everything is still ... well, not where it's meant to be, as it's never been there, but where it's accustomed to being!

And in the meantime,  if you have any ideas on how to entertain a tired, grumpy and hurting fourteen year old who can't use his dominant hand or arm, let me know!

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Friday, 17 June 2016

The day for Dad

Around about this time of year the shops are filled with cards and signs and gifts in anticipation of Father's Day - (Sunday 19th June this year btw in case you haven't been paying attention), and it got me wondering how this works in other families.

Since the kids were teeny they've proudly presented Mr with cards covered in painty handprints and lopsided glittery clay tealight holders (or versions of) each year - made at toddler group, or nursery, or brownies, or Mencap junior club, or school.  As the years went by the cards evolved from messy glittery lead by a grown up ones into construct (independantly) by numbers affairs, with pre cut shapes and 'here's one I made earlier' examples.  After that they became a little more personal, with carefully thought out messages inside and instead of being wobbly addressed Dear Daddy it became a more solemn To Dad, and now they're all in secondary school it's only Smiler who brings one home at all - Petal and Noah tend to hole up in the kitchen for an hour or so together, sat up to the table surrounded with different colour pens, them emerge grinning while trying desperately to look cool and casual with a card behind each of their backs.  Because of the different personality types Mr seems to get the same constellation each year - a painty handprint one from Smiler, an ernest message inside an 'I had a good idea but lost interest halfway through so only coloured in half the letters' type card from Noah, and a detailed desperately trying to please I love you so so so much one from Petal.

The accompanying gifts - well, the tangible teabag stapled inside a teapot shape card type naturally dropped off several years ago, and as a family we then gravitated towards 'I'll make you a cup of tea' or 'we'll do the washing up' or 'we'll make dinner' type rather than 'here's a huge teddy bear with a t-shirt that says I love my dad on'.

It's the same for Mother's Day to be fair, so I don't think it's just me being stingy and not wanting the kids to spend money on crap (although that definitely is a part of it), as Mr has led them to do similar - last year (back when we had an oven) Petal baked a batch of cupcakes completely by herself, and helped Smiler to help her ice them.  Those cupcakes, for all the messy icing and sticky cases and dry insides were absolutely perfect, and what felt like the best bit for me was the pride beaming from her face as she told me she'd looked up the recipe herself, and that the only thing Mr had done was get the mixer down from the shelf.  I know he felt the same when she made him biscuits last year, and when Smiler presented him with the bean he'd grown in a pot.

I get that others show their love by spending at the shops, but I'm glad that we have evolved our family traditions differently.  I'd rather all three of my kids use their own words to tell their dad how much he means to them, rather than relying on a printed rhyming message in a card picked up in a supermarket.  I'm glad that they want to fuss over him and sit with him and walk the dog with him instead of giving him a 'best dad' mug and then going off to do their own thing.  Of course it needn't be all or nothing, but I know too many mums and dads who get precious little meaningful interaction from their offspring to be blasé about mine still (usually!) wanting a kiss goodnight.

So, for Father's Day this year Mr will be getting a lie in - which I imagine will be greatly appreciated as he is at a friend's stag do all day on Saturday; breakfast made for him by the kids - most likely coffee and cereal or toast as we're still without an oven; and then his choice of activities for the day, which will probably consist of trying to find a film that everyone will watch and taking Eli for a nice long walk.  So long as there's plenty of hugs to go around, he'll be happy.

How about you?  Any plans for the day or memories of days long gone?

Thursday, 9 June 2016

A day in the life of a carer

It's Carers Week and when I spoke to John Darvall on BBC radio Bristol yesterday he asked what I actually do, in real practical terms.  I realised that so much of what I - and other carers - do is so automatic that you don't even realise you're doing it.  It needs to be done, so you do it.  To focus myself on what I actually do do, I'm noting down everything I do over the course of today. Plan is simple - only thing going on is a hospital appointment for Smiler at 12:20 - endocrinology.

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6:20  Smiler awake, so I go in and help him untangle himself from his bed covers, get on his feet and put on his dressing gown.

6:30  Boiling the kettle for a cuppa for each of us.  Smiler wants to sit up to the table in the kitchen, so I help him sit in his chair, adjust the footplate and push him in.

6:45  Warming up Smiler's weetabix and help him eat breakfast, singing along to the radio to make him smile.

7:00  Draw up Smiler's two oral meds into syringes, wipe the spilt weetabix off the table, hand him the syringes one at a time to take the meds.  Mix another medication into his drink, remind him he has to drink it before he gets down.

7:15  Back into Smiler's bedroom, wash his face and brush his teeth in his bathroom, help him use the toilet.

7:25  Help Smiler get out of his pyjamas and into his school uniform, put on his splints and shoes so he can walk around the house more independently, and show Smiler again how to open his blinds.

8:15  Wash and cut up a pepper for Smiler to have as a snack in school, check he has a spare change of clothes in his school bag.

8:25  Get the wheelchair from the back of the van, put it up and help Smiler sit in comfortably.

8:30  Time to walk to school, waving at a lollipop lady on the way, making a mental note to check Smiler's room for his library books as we pass the library.

9:00  Handover Smiler to the class team, reminding them that he has a hospital appointment and we'll pick him up at about 11:45.  Explain that he will probably have bloods done but he hasn't asked me yet, so if he asks them they should tell him that they aren't sure, and he'll have to ask me when I get there.

9:35  Back at the house, strip Smiler's bed and put the washing machine on, then sit down for a cuppa and to check emails.

9:45  Ring GP to make an appointment for Smiler - as we're new to the surgery he has to be seen before they issue any of his repeats for his regular meds.  No appointments available (for the next two weeks), advised to ring back tomorrow at 8AM.  I explain it's routine, not urgent, but there are no appointments available to book for two weeks, which is as far ahead as they tell me they can book.

9:50  Spend 15 minutes on the phone to the council, going around in circles in their phone system.  Need the email address of someone in local taxation department to give to Smiler's (council employed) OT so she can email them explaining that we/the house meets the criteria for a band reduction for council tax.  Get nowhere.  Tweet @BristolCouncil to ask them for an email address.

10:10  Paint Smiler's bathroom ceiling.

10:35  Ceiling finished - woo hoo!  Time for another cup of tea and a bit of sock knitting.

11:20  Hang up the washing and put another load on.

11:20  Make a packed lunch for Smiler and gather some toys to use as distractions while we're waiting.

11:30  Into the van to collect Smiler from school.

11:40  Into school to pick up Smiler complete with wheelchair, drive into town.

12:05  Mr drops Smiler and I outside the children's hospital while he goes to find a parking space.

12:15  Smiler called to be weighed, so shoes off, splints off, out of the chair, then splints and shoes back on.  Squeeze down a hospital corridor with rows of chairs on both sides trying not to run over anyone's toes.

12:20  Smiler called to have his height measured, so shoes off, splints off, out of the chair, then splints and shoes back on again.

12:25  Set Smiler up with headphones on to watch Aladdin dvd while we wait to be called to see the consultant.  Mr arrives, having finally managed to park the car.

12:50  Get called for appointment - detangle Smiler from the headphones and dvd player, maneuver into the room and on with the appointment!

13:15  Appointment over (no bloods! Yay!) and I take Smiler to the BRI to get his newly prescribed meds from the pharmacy while Mr goes to get the car.

13:25  Trying to occupy a very stressed Smiler while waiting for meds to be dispensed - time for packed lunch!  Help Smiler eat his lunch, then decide he needs to switch off so headphones back on and Aladdin plays.

13:45  Pharmacist comes out, explains she can't dispense meds as Smiler is under 18 and she needs to talk to Smiler's consultant first.  Can't get hold of him, so will have to come back for meds tomorrow, or else pick them up from another Boots.  Arrange to collect tomorrow from a Boots out of town.

13:55  No point taking Smiler back to school so Mr drives us home instead.

14:20  Take Smiler to the bathroom, wash his face and hands and then settle him on the sofa to watch the end of his film.

14:30  Make Smiler's bed now his sheets are dry, and put another load of washing in the machine. 

14:40  Smiler's film is finished so we go into his room to find his library books.  Having only just moved house they could be anywhere, but Smiler finds one in a box of books as we unpack them and line them up on his shelf and I find the other.

14:55  Leave Smiler to chill out in his room looking at books while I try to get through to local taxation on the phone again - waste of time.

15:25  Herd Smiler into the kitchen for a quiet cuppa before his brother and sister get home from school.  He asks for his shoes off so I undo his shoes, unstrap his splints, and rub his feet for a minute - they need to stretch out after being held stiffly for so long.

15:50  Hang up washing and talk doors with the builder - need to fit a door to his bathroom with a handle he can use independently.

16:25  House is invaded by Smiler's sister and her friends - Smiler potters about while they sort out drinks and apples for a snack.

16:30  Smiler trips over in the hallway - takes both me and Mr to get him up and to the sofa.  Read to him to help him relax before we check him over to make sure he hasn't broken anything.

16:45  All seems fine, so Smiler listens to his radio in his room while I sort tea out for everyone.

17:05  Smiler brother returns from school and it's time for tea.  I sit and chat with everyone while Mr helps Smiler with his food.

17:40  With tea finished I take Smiler with me to walk the dog - get the wheelchair out of the van and push him over to the field where he walks a little then asks to get back in his chair.

18:15  Mr already find the washing up so we have a cup of tea and a chat while Smiler spends some time in his room.

18:55  Read Smiler one of his long term favourite books (Giraffes can't dance) then help him tidy his room.

19:15  Help Smiler draw his blinds before taking his clothes off to get in the shower.

19:35  Get Smiler's pyjamas on and his dressing gown, and into the kitchen for meds.

19:45  Draw up Smiler's epilepsy meds into a syringe, hand it to him to take.  Mix another medication into a drink, replace two slow release patches behind his ears, and check he can still use both arms/hands normally after falling earlier.

19:55  Smiler uses the bathroom, laughing as the wash/dry toilet does its thing - much preferable to me having to wipe and wash him!

20:00  I tag Mr in to do Smiler's teeth while I hand Petal's friend back to her mum.  

20:05  Chatting interrupted by Mr calling me into Smiler's bathroom.  His jaw has dislocated and I'm the only one trained to manually put it back in.  First attempt fails, second succeeds.

20:10  Smiler comes into the living room so we can keep an eye on his jaw - he wants to go to bed but we persuade him by offering an episode of the Lion Guard (kind of a sequel series to Lion King).

20:20  After his jaw has fallen out twice while he was laughing Mr and I realise this will be a long evening with Smiler.  I make some sandwiches as there's no point trying to have a 'proper' dinner in case we end up in A+E.  Smiler's sister goes to bed, his brother stays downstairs watching the programme!

20:55  Another dislocation which I have to put back in - the amount of pressure you have to use is scary.  Smiler vomits so Mr takes him to change his clothes and brush his teeth while I clean up in the living room.  Noah decides to go to bed - I remind him we might have to take Smiler in to the hodpital and not to worry if he hears us bustling about.

21:10  Smiler is back in the living room in fresh pyjamas, I put on another episode of Lion Guard and cross my fingers.

21:35  No further dislocations, so I take Smiler to the toilet and we tuck him into bed.

21:40  Cup of tea!  Fold the washing, and load the machine with Smiler's pyjamas and rinse.

22:00  Sneak a peek into Smiler's room - he's in bed snoozing with his mouth closed.

22:05  Put a load of washing on including the pyjamas and set the timer so it'll be finishing when I get up.

22:15  Watch TV for a bit with Mr - there are emails I should be writing but I'm knackered.

22:40  Smiler's still sleeping - mark the time on our white Smiler board, set my alarm for in an hour and Mr's for an hour after that, and go to bed.

23:40  Up and check the board - he was sleeping when Mr checked him an hour ago.  I peek in, and Smiler's mouth still closed - I set the alarm for in two hours, Mark it on the board and go back to bed.

1:40  Up and check the board (fine), check Smiler (fine), write on the board that I'm done, and back to sleep.

😴 😴 😴

Carried over for tomorrow: 
●  check Smiler can use both arms after falling today
●  ring GP surgery at 8AM to get a routine appointment for Smiler so they can issue his scripts
●  tell school about the fall, the jaw dislocations and the late night
● chase up the medication that the pharmacist couldn't give us with the local Boots, if no joy then the BRI pharmacy and the consultant
●  keep trying to put the council OT and the council local taxation in touch with each other
●  check out door handles in B&Q to see what would work for Smiler

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Wednesday, 1 June 2016

Next week is Carers Week

Being a carer isn't always straightforward - even if you're clear about the extra things you do that constitute caring, sometimes people around you don't get it.  The first time I approached the reception desk at the gp surgery for example, and asked to be added to their Carers Register.  

'So, who do you care for then?'
My son, Smiler.
'Oh they don't mean that kind of carer, it's just for people who care for someone with a disability'
Smiler has a disability.
'But you're his mum, not his carer'
I'm a parent carer.
'What's wrong with him then?'
He has a unique chromosome disorder
'I'm not sure that counts...I'll just check with someone.'
'No, I'm sorry, it just means people who are proper carers, for adults.'

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And a week later, having checked with the Carers Support Centre that the gp Carers Register is intended to include ALL carers, I gave it another go.
'But children need so much looking after anyway, I don't think it matters if he's disabled'
Well, he's entitled to DLA, which means he needs "substantially more care than another child of the same age without a disability"
'What was it you said was wrong with him?'
Severe learning difficulties, epilepsy, haemophilia, microcephely, specific language impairment, sensory integration disorder, scoliosis.  He's non verbal and doubly incontinent. He has nine consultants that's he sees at least twice a year (each), four different regular medications twice a day and another three that are PRN.  He can't weight bear so is hoisted in and out of his wheelchair from bed or a beanbag.
'Oh.  Okay.  I'll tick the "carer" box on your records then.

But why does it have to be do hard?  I don't want to have to list Smiler's health issues to a receptionist, and I don't see why I should have to.  If I was caring for my elderly dad, or my partner, would I be expected to explain 'what's wrong with him'?  I should point out that this conversation was years ago, but I regularly talk to other parent carers who face similar challenges.  While (and I quote the surgery receptionist here) "proper carers", as in carers of visibly disabled adults, seem to be acknowledged, there's still a long way to go for the rest of us. 

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This is the first post in a short series that I'm writing for Carers Week, which begins on 6th June.  For more info see the Carers Week website, and for events and general goings on next week in Bristol and South Glos check out the Carers Support Centre news page.

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