Sunday, 26 February 2012

ABC of me ...

Grr - that little Minx Tricky Customer has tagged me or whatever it's called.  It's an ABC award where I describe myself using all the letters of the alphabet

Right - so here goes ...

A Big Chatterbox, Doesn’t Enjoy Figs, Gives (Great) Hugs, Is Jolly Kind, Loves My Numerous (2 – not sure if that really counts as numerous) Offspring, Polite-ish, Quite Regularly Stubborn, Thoughtful & Understanding, Very Wine-filled, eXtremely tired, Yawn. Zzzzzzz.

Phew!  Hard work!  

(sorry guys!!!) :D

Thursday, 23 February 2012

The end of Winter?

Here comes the sun!

It’s a glorious day here, the sun is shining, the birds are singing, there’s that smell of spring in the air and I can hear the Eager Beavers out with their lawn mowers already.  It’s the kind of day that puts a smile on your face.  In Little Mamma’s house, there is even more reason to smile.  Today is the day we start the Ketogenic diet.  Today is a day filled with hope and endless possibilities.  It’s the start of our exciting journey leaving the bitter winter of seizures behind; our chance to escape from the clutches of epilepsy. 

I don’t want to get my hopes up.  We have been sorely disappointed so many times in the past.  But I can’t quite control myself.  Epilepsy has been the big dark cloud in our lives for over a year now.  Each seizure Little H has is potentially life threatening and when they begin we have no idea if or how they will end.  He doesn’t have hundreds of seizures a day, like some poor children, but when he has them, he stops breathing, he turns blue and within a short period of time his heart rate drops dangerously low.  We live in fear of his seizures; they affect every aspect of our lives.  We turn down invitations to weddings for fear of them happening there.  We can’t get babysitters – who wants to look after a child when there is every possibility that they will stop breathing in your care?  H’s seizures are classed as ‘medically intractable’, that is to say that drugs won’t work for him.  After trialling a large number of them we’ve been told there is only a 2% chance his epilepsy will ever be controlled by medication.

Our lifeline then, our glimmer of hope, is this – the Ketogenic diet. There’s a 50% chance they will have some effect on his seizures – whether this be a reduction in frequency, severity or the Holy Grail – a cure – remains to be seen.  Imagine, Little H – seizure  free – oh how different life would be!

So today feels like the start of something special.  A new beginning; Spring after a long cold Winter.  My heart is fit to burst.

Please God let it work.

Little darling, the smiles returning to the faces
Little darling, it seems like years since it's been here
Here comes the sun
Here comes the sun, and I say
It's all right
The Beatles, Here Comes the Sun.

Monday, 20 February 2012

The trouble with respite

It’s a thorny issue, respite.  You don’t want it, even if you might need it.  You fight for it and feel guilty for getting it.  You want that time, those few precious hours, but can’t bear to leave your child with someone else.  For my own sanity and for the sake of my family, I know respite is a good thing but the guilt is gnawing away at me.  I know I’m not alone in feeling like this and that many people go through these anxieties and emotions when they begin to think about respite, be it in the home or elsewhere.  So far though, my experiences of respite haven’t worked out as well as I hoped – and that’s before we’ve even actually received any; it’s the process of trying to get respite that I’ve struggled with.

We’ve had a few false starts as far as respite is concerned.  Initially when it was first mentioned I balked at the idea.  It was my job to look after my child and look after him I would.  But as time wore on, his needs became greater and my guilt about neglecting Cheeky increased, I began to see the potential benefits and agreed to go ahead.

Let me explain what happened.

Initially the Community and Palliative Care team assigned us one of their two respite carers who provide support to families with children with complex needs, terminal illness and end of life care.  He was lovely, a really kind man, but was daunted by the severity of H’s epilepsy and felt unable to support us in that way.  I was disappointed and a bit concerned that H’s needs warranted such a response, but in fact J, the Carer, provided invaluable support in other ways, by driving me to hospital appointments so that I could sit in the back and monitor H at a time when his health was particularly unstable.

Our next foray into respite was through the local hospice. Again, the fact that such a place was even suggested sent a chill down my spine.  “We’re not in that situation; H isn’t like the children that need to go there.”  I was reluctant, but open to suggestion; Mr. M really didn’t want to explore it as an option at all.  This view wasn’t helped by our first meeting with the Dr from said hospice.  She met us in the High Dependency Ward after a particularly stressful night with H.  He’d had terrible breathing problems the night before and an unusually high temperature, we’d been blue-lighted in by ambulance and met by a crash team in the resuscitation section in A&E.  Things went from bad to worse when they failed to access a vein to put in an intravenous drip and felt that the only option was to do something I later described as ‘drilling into his bone’.  I think the medical term is ‘Intraosseous Infusion’.  It was all quite upsetting.  It was a one-off though, and at that time unusual for H to be admitted because of breathing difficulties, previous admissions were mostly epilepsy related.  The Doctor, I can alone assume, built up a picture of Little H, based on the severity of that one night and the fact that he now lay still and silent in HDU hooked up to numerous monitors.  She broached the subject of H’s ‘resuscitation status’ and suggested that it was not necessary to take him to hospital to be treated, that measures could be put in place to care for him at home and let nature take its course.  I assumed I had misunderstood and questioned ‘but surely that sounds like end of life care?’ and she nodded sagely, and discussed quality of life issues.  I could barely look at Mr. M who shook with anger!  “How dare you imply that H has no quality of life!”  Needless to say, Mr. M wasn’t keen on visiting the hospice after that.  (As an aside, the community nurses telephoned us at the hospital and apologised, the Dr had misunderstood the situation etc etc, but the damage was done by that time and no-one could take back what had been said).

We have visited our local hospice three times now, have never met that doctor there and have always found the place and the staff to be lovely, caring and welcoming.  We are still scared about leaving Little H on his own there though so use it more as a family day out.  We will work towards using it for respite in the future.

Another attempt at organising respite was through the Complex Care team. We were referred to them in September and they came to assess our level of need in October.  The assessment was disastrous from start to finish.  I felt it was a bit like completing a DLA form – that I had to prove just how bad things could be in order to get support.  The assessors fired a series of questions at me “Does he need oxygen?” “How much?” “How often?”,  had little regard for my feelings and no common sense whatsoever – “Is he doubly incontinent?”  - he’s 18 months, how many 18 month olds regardless of need are fully toilet trained?  They even genuinely asked me “Is he meeting all his developmental milestones?”  I think I laughed at them at this point!  They informed me it was a point scoring exercise,  that all my answers would be fed into a computer and that would allocate the number of hours.  I’d hear in 4-6 weeks.  14 weeks later we were allocated 3 hours a week, to the horror of our community nurse who couldn’t understand why a child with Hugh’s level of need was awarded so few hours.  We’ve since been reassessed and are waiting for the outcome.  I won’t hold my breath!

Wednesday, 15 February 2012

What's wrong with him?

The man who served me today at the McDonald’s drive-through (No, my healthy eating plan isn’t going so well!), leant out of the window, into my car and asked;

“What’s wrong with the baby?”

Initially I pretended not to hear him, but insistently he asked again:

“What’s wrong with the baby?”

How exactly am I supposed to answer that?  This is the point at which a diagnosis would really help; a simple one word answer that summed everything up and ended the rather inappropriate conversation there and then.  

In reality, what did he really want to know?  That Little H has an unusual rearrangement of his chromosomes? That he has a severe cortical visual impairment that effectively leaves him nearly blind?  That he is severely globally developmentally delayed and functioning at about the age of a 6 week old baby despite being nearly two?  I doubt it.  His real question, was ‘Why does he have that tube up his nose?’ as the myriad of other difficulties H has are not immediately obvious.  In the end I said “Epilepsy” which explains nothing really, as NG tubes aren’t a given in children with epilepsy, although it is in part responsible, since H lost his ability to swallow safely after a particularly bad run of seizures requiring heavy sedation for a couple of weeks.

Anyway.  My point is – I hate that question: ‘What is wrong with him?’  It’s not, as you might imagine, that I am insulted that someone is implying there is something wrong with my son, that he is somehow less than perfect. I know that that isn’t really their intention.  It may be out of kindness, concern or pure nosiness and it is a clumsy way of wording it I suppose, but the real reason I hate that question is because I genuinely never know how to reply. 

I was asked the same question, in a more polite way, later in the day when visiting a potential school for H; “What’s his diagnosis?”  and “What are his educational and medical needs?” It all means the same thing.

What’s wrong with him?

And I find myself listing medical issues, missed developmental milestones, impairments and difficulties; all the things that are ‘wrong’ with Little H and all the things he can’t do.  It’s horrible and what’s worse is how I detach myself from the whole situation and I simply reel off a list of words.  Those words don’t sum up how his beautiful smile lights up the room or how he laughs to music; they tell nothing about how he loves his feet being played with and enjoys flashing lights.

There was a time, about a year ago, when I was obsessed by getting a diagnosis, but I don’t worry about it that much anymore.  It is at times like this, however, when I am required to focus on all the negatives, that I think a diagnosis would help:  A neat little label that the Head Teacher could put on his form; a one word summary that explained it all. 

And I could instead tell them all about H’s infectious laugh and how much he loves swimming.

Tuesday, 14 February 2012

When things go wrong ...

When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit-
Rest if you must, but don't you quit.

Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a fellow turns about
When he might have won had he stuck it out.
Don't give up though the pace seems slow -
You may succeed with another blow.

Often the goal is nearer than
It seems to a faint and faltering man;
Often the struggler has given up
When he might have captured the victor's cup;
And he learned too late when the night came down,
How close he was to the golden crown.

Success is failure turned inside out -
The silver tint in the clouds of doubt,
And you never can tell how close you are,
It might be near when it seems afar;
So stick to the fight when you're hardest hit -
It's when things seem worst that you must not quit.

Author Unknown

Saturday, 11 February 2012

If ...

If things were different, I'd be sat at home now, half way down a bottle of wine waiting for my takeaway to arrive. A curry, I imagine. With a nice peshwari naan. Mr. M and I would've chosen a film from the planner to watch and I'd be looking forward to a well deserved week off work. I'd be shattered; there's something about that last week before you break up for a school holiday where you feel like you've given every ounce of your energy and it takes all your strength to get to Friday; and I'd have a fun week ahead planned with th aim of getting all my marking and planning done on the first weekend. Invariably by this time next week I'd be stressing about all the planning and marking I still had to do!

But life isn't like that any more. Today, for me, isn't the first Friday of the half term holiday. Next week won't vary much from this week or from the week after. Except in that hopefully we won't still be in hospital and there'll be a few less therapy appointments.

Instead of my wine, I have a cup of weak tea, kindly brought by one of the nurses. The films of choice on a children's ward are Bee movie (I swear they've had that one on for over a year now) or Kung Fu Panda. No thanks. And a nice takeaway? Does another bag of crisps count?

So this Friday night is spent, like many before and many after will be, in the children's ward of the local hospital. H has been having breathing difficulties and we had reached a point that we couldn't manage them any longer at home, so here we are. Last night was dreadful, I think I had less than an hour and a half of sleep. H seems much improved this evening though so I am hoping for a better might. Just in case though, Mr M did the early evening shift here, so I could get a couple of hours sleep at home. And a shower! But as I returned, listening to the Friday night 'tunes' on the radio, gearing people up for their night on the town, putting them in the party spirit I thought how different my life was from the Friday nights spent in the pub and the Saturday morning hangovers. Of course much of that changed when Cheeky came along but Little H has changed my life again, beyond recognition.

If ... I thought... If H was different, if H was, well, normal ....

And I thought about putting my feet up after a hard week at work, the wine, the take away, the week ahead meeting friends and their children in the afternoons, nights out with mates and more wine! Generally after half term, I'd be even more tired returning to work after a busy week of catching up with the people I didn't see the previous 6 weeks. And I'd have a list of jobs to get done, mountains of housework which had fallen by the wayside because I'd be too tired to do it after work.

I stress and moan about not seeing my mates any more. But I didn't see them that often before. It was just that work was the reason then and I always had half term to squeeze them in. Now I make more of an effort to see them when I can, when H is healthy, rather than timetabling it every 6 weeks.

And I'd feel guilty about all the time I spent at work, with Cheeky and H in someone elses care, while I looked after other people's kids. I'd want to cram as many fun activities into the week off as I could, to make up for feeling guilty for all the time I wasn't there.

So maybe, I'm not so badly off after all. I get to spend time at home with my beautiful boys. My house still isn't tidy, there is always a mountain of washing to be done, but I realise it's not important. None of it is. what's important is my boys and I are together and we have fun, lots of fun.

Monday, 6 February 2012

I'm a real boy!*

Well, it’s all go for Little H at the moment.  There are lots of exciting changes and developments afoot.  The statementing process has begun, so we’ve begun looking round local Special Schools that cater for children with complex needs.  The Complex Care team have assigned us four hours a week which will start during half term.  That’s four whole hours a week when someone else will be responsible for H and I can ... who knows?  Have a bath?  Take Cheeky to the park?  Go to the hairdresser?  Ok, so it will take some time to get to that stage and I’ll probably just go into the kitchen and wash up, but it’s a start.  I’ve made loads of enquiries about local places to take H – there’s a Special Needs playgroup, a sensory support service where they offer massage and reflexology (for H, not me) and a donkey sanctuary that cater for children with additional needs.  It is all very exciting.  I’m not sure how I’ll be able to fit it all in.  But the two, major developments, both starting this week are Conductive Education and the Ketogenic diet.  I’ll post separately about the diet.  This post is all about the very wonderful National Institute of Conductive Education. 

The aim is to work intensively with the parent and child to teach the child basic skills and encourage independence.  I thought it would be a bit like physiotherapy but it seems to be more about incorporating it into daily life than working on a specific skill repeatedly.  For example, instead of just picking Little H up from his mat, with support he is encouraged to roll up onto his arm and push up into a sitting position before I lift him.  H, it seems, will have a more active part in his physical development, rather than me just stretching his arms for him.  That is not to say that physio doesn’t have a place – it does and I will continue with the arm stretches and encouraging him to tuck his chin in – but Conductive Education seems to be a bit more proactive and with an obvious goal in mind. 

H absolutely loved it.  There was lots of singing – there are different songs for every activity – and toys to look at and motivate him.  The Conductor spoke to him, explained what she was doing, what he should be doing and paused to give him the opportunity to respond.  OK, there weren’t any miracles, she didn’t say “stretch your hands above your head” and he did it, but I liked the fact that she gave him the opportunity to, that she spoke to him as if she expected that he could and would do these things.  In many ways, I felt a bit bad, for not giving him the opportunity and for doing things ‘for’ him rather than ‘with’ him; for not always telling him/asking him but just going ahead and doing it ‘to’ him.  It made me rethink the way I interact with him sometimes.  He’s nearly two now, who’s to say how much he does or doesn’t understand.

There were lots of different props as well to support Little H – wooden blocks, benches, chairs and funny ladder things.  He spent time on his tummy, on his back, rolling and sitting.  But the thing that astounded me most and had me very close to tears was to see him standing.  He’s never stood before really; his knees give way or he lifts his feet from the floor.  But with his trusty Piedros, the Conductor supporting his legs and body, his arms locked straight with splints (so his elbows wouldn’t bend) and his little fists clenching the ladder tightly, he stood upright.  And he laughed!  I think he genuinely liked being in that position. Maybe I read too much into it, but I’d swear he was proud of himself.  I was certainly proud of him.  He looked so different; so grown up and like a big boy!  I could’ve cried.  And then she had him walking; tiny, supported, shuffling step, after tiny, supported shuffling, step.  It was wonderful.  I have high hopes for the future.  I think maybe, just maybe, he could show them all!

I've got no strings,
To hold me down,
To make me fret, or make me frown,
I had strings,
But now I'm free,
There are no strings on me.

(*From Pinocchio)


Friday, 3 February 2012

Support - a Special Saturday Post

One of the things I love about the #specialSaturday posts is that we’re given an idea to run with and that everyone then goes on to interpret that differently.  By Saturday evening, there’s a wealth of posts all based loosely around the same topic but all coming from different angles and perspectives.

This week’s topic is “support” and I pondered how to approach it.  I have previously discussed how I had begun to feel isolated from many of my ‘real’ friends and the wonderful emotional support I had received from my ‘online friends’ through facebook andtwitter.  That still rings true today and I have a growing community of like minded people on the internet, who provide the support and understanding I need.  Thank you all very much – you know who you are!

But since I’ve ‘been there, done that’ already, I thought I’d approach the concept of support from a different angle.  I was genuinely interested to read about all the professional’s involved in Sam’s care (@Trickycustomer)  so I thought I’d compile my own list.

So here are all the medical/educational/and God-Knows-what else people involved in supporting us as a family and catering for H’s care and well being...

~    Consultant Community Paediatrician: pretty much oversees all of H’s care.  She is a lovely lovely lady, who always returns my calls and responds to my emails (yes I realise I am VERY lucky in that respect).
~       Consultant Paediatric Immunologist: A man who could tell me the sky was red and I’d believe him; he speaks with such authority and conviction. He originally started seeing us as H’s white blood cell count was unusually high and he had repeated infections, for which H now has daily antibiotics. He kept us on, without any real need to, as he does the ward rounds at the hospital and we spend a lot of time there, just to oversee that side of H’s care. (And I like to think it’s because he quite likes us too).
~        Consultant Paediatric Neurologist: For the epilepsy
~     Consultant Clinical Geneticist: They’ve still no idea but we keep going back every so often to be told that!
~        Physiotherapist
~        Occupational Therapist
~        Early Support Teacher: similar to Portage I think.
~     Sensory Support Teacher: For his visual impairment. She was able to explain all the gobbledigook from the hospital about the results of his eye tests (basically he’s blind but it might improve a bit because it’s his brain and not his eyes that are the problem).
~     Speech and Language Therapist: for his feeding (I know – I never knew they did that either!)
~        Ophthalmologist: Eyes
~        Audiologist: Ears
~     Palliative Care Nurse: lovely wonderful nurse who sorts everything out for us, but has basically been assigned to us because they don’t expect H to reach adulthood.
~      Early Years Practitioner: Before H’s seizures got so severe, he used to have a short break session with these. It was a bit of a drive though so when I stopped leaving the house with him, she organised that she would occasionally do a short break in the house instead! 
~      Community Team worker: From our local hospice. Another lovely lady who took us out for lunch this week to meet other mum’s with life limited/threatened children.  Keeps trying to encourage me to use the hospice for full respite – an overnight stay, but I’ve chickened out so far.
~   Educational Psychologist: starting the statementing process. Fun fun fun – looking forward to the obligatory battle with the LEA.
~      Dietician: Sorting out his tube feeding.  Swapping to a new one soon as we’ll be starting the ketogenic diet!!! Woo hoo (No doubt more about this to follow).
~      Conductor: new thing I’m trying with the National Institute of ConductiveEducation – let’s see if we can get this lazy bones rolling/sitting/standing... walking even??? Who knows?
~        Health visitor: doesn’t seem to do a lot except ask questions and then leave so I have to tell the same old story to the next one that comes along.
~    Complex Care Nurse(s): exciting development – we’ve been assigned a nurse for four hours a week to have H! Haven’t met her/him/them yet so will let you know how it goes.
~        Respite Carer: bless him, lovely man, works with very complex kids but decided H was a bit too scary! He takes me to appointments so that I can look after H in the car while he drives.
~        Homestart Volunteer: another new one – seems lovely, someone to help me get out of the house with the two boys. Basically I can go to the supermarket and if H stops breathing I can concentrate on sorting that out rather than worrying about Cheeky legging it out the door and on to the main road!  An extra pair of hands.

As you can imagine, keeping up with all the appointments and telephone calls is a nightmare.  I could do with adding a secretary to that list!  I count myself lucky that we have such a high level of support though – I know many children, particularly those like H who remain undiagnosed, have difficulty accessing appropriate provision.  Some days our home feels like Piccadilly Circus and there is not a day goes by without a letter from some professional or other, but we have been lucky enough to find a team of people who are great at their jobs and seem to want the best for H.  Without their input and support we wouldn’t be where we are now.