Cheetahs In My Shoes

living with the imaginary menagerie and all that it entails

24/05/2013
by Jenny; Cheetahs In My Shoes & Just Photos By Me
0 comments

Pen Licenses and Super Spellers

Today the Sealion and Cheetah Keeper finish school for the May half term holiday.   When they return there will be a mere 7 weeks and 3 days until they complete this academic year.  As much as the beginning of 2013 has been, shall we say, “tough” for us, that time has flown and the plans for “transitioning” to the next class are beginning to bleep on my radar of “must do” jobs.  Transitioning being moving up to the next class in old money – for my two it’s about planning, explaining and implementing the changes that occur as you move to a new teacher and a new classroom.  It also requires the handover of all the medical files, details and plans.  My heart is sinking as I type – I have yet to find it the straightforward process that it suggests itself to be.

This week the Sealion Keeper made it onto the “Excellent Writing Board” for the first time.  Her name will get mentioned in the class newsletter.  She is very proud.  I am very proud.  She has made massive progress this year (although has also been having extra literacy and maths support out of school for a year and her improvement has been marked since starting that) – her writing is pretty legible, joined up most of the time and on the line.  I cannot emphasise how much of an achievement this is for her – the girl who had “failed to make any progress” between Easter in Year 1 and Easter in Year 2.  That time has passed and I have to let the bitterness that this causes me go, but it goes to show (to me at least) that with the correct input and awareness of what her Ehlers Danlos Syndrome was doing to her ability to write, she wouldn’t have essentially written off a year of her early education in terms of literacy.

She still struggles processing it all, to be able to sit, hold her pen correctly, get her other hand to hold the paper, think of the ideas, apply the grammar (the girl knows more about grammar now than I did when I got to secondary school), remember the spellings and then get it all onto the paper in the right order is often beyond her.  She has the ideas, the messages leave her head correctly but by the time they get to the paper it can all be one big jumble.  She will get there but it’s taking so much effort at the moment she can barely speak when she gets home, the exhaustion is so great.

The target in Year 3 in writing is to ‘earn’/be awarded a pen license.  This little bit of card with the child’s name on means that they have graduated from having to use a pencil for everything to being allowed to use a handwriting pen.  The criteria for the award seem to be a little hazy – but as far as I can work out are very much based on achievement.  At a recent SEN meeting I was told, at great lengths, about how important it is for the effort of a child to be recognised, over and above the achievement.  So, if on a ‘pre-test’ of spellings a child gets 1/10 and then, after a week of learning, comes back and gets 7/10, that is ‘better’ than a child who got 9/10 on the ‘pre-test’ and improved to 10/10 at the proper test.  I get that – I’m not sure the business world will, but I get it.  I can see the advantages of rewarding and praising effort – it means that once you get to the point that education does become a challenge it won’t be a crashing shock and instil feelings of failure.  Putting in 100% effort to be the best you can is a very healthy mentality.

However, if you are going to preach/deliver that ethos it needs to be consistent.  The Sealion Keeper has worked her hardest all year – she is known and loved for the amount of effort she puts in to everything.  She is so tired she has fallen every day at school for a week in the playground.  She still doesn’t have a pen license because she has not achieved the correct requirements in her writing – her additional needs and the amount of effort she is putting in have been completely ignored.  She feels a failure because she hasn’t got her pen license and is cross with herself for having the syndrome that means that she’s not in the same ‘gang’ as her friends.   That does not help me in the slightest.  She needs to accept herself for who she is, complete with Ehlers Danlos Syndrome and what it brings.  Not have the point emphasised that it makes her different.

As for the spellings, thankfully this year the ‘super spellers’ boards have been removed from the classroom windows.  Those who achieved 10/10 (or indeed 20/20) each week were on the boards as recognition of their score.  In Year 2, the Sealion Keeper would be rewarded with a treat from the teacher after a set number of 10/10 scores had been achieved.

This again, completely ignores the effort part of the equation.  When you have spellings that include ‘opaque’, ‘translucent’ ‘iridescence’  and ‘transparent’ (aged 7) and you have difficultly sequencing, writing, have speech and language issues that mean phonics has been a complete waste of time (shall I go on?) and you’re tired, getting anything out of 10 is an achievement.  To go from perhaps being able to spell 1 word to 5 words in a week is a massive achievement and yet you would never make it to be a ‘super speller’, despite working your backside off.  Is that a harsh lesson in reality or is that really not making the effort to see that not just the education but the physical and emotional well being of every child matters?

I’ve written this post to support Ehlers Danlos Awareness Month and am linking up with Mummy Barrow’s Ranty Friday too.

This adventure playground was a test of stamina and gross motor skills. He was utterly exhausted when he'd done it, his hips were hyper-extending so much his feet turned out and he was so tired he could barely speak. But he did it, and loved it and it did wonders for his confidence. Just a 'normal' day really,

13/05/2013
by Jenny; Cheetahs In My Shoes & Just Photos By Me
20 Comments

A Day in the Life of an Ehlers Danlos Syndrome Family

What’s a ‘normal’ or ‘average’ day for any family?  Get up, breakfast, school/work, home, eat, bed?  With the normal essentials of washing, homework and ‘jobs’, hopefully something cool/relaxing/engaging to do in free time and generally having the chance to just ‘be’.

With 3 of us in this household with Ehlers Danlos Syndrome – Type III we don’t really have an ‘average’ day.  Yes sure, we get up, have breakfast, go upon our merry way and end up in bed at some point but the actual realities of making a day happen are a bit different.

Here’s a bit of an outline so that if you happen to see an EDS child in your classroom or a parent of an EDS child at work, or someone with EDS at work, this is what might have happened to get them where they are that day…

Firstly, for many of us (possibly most of us?) Ehlers Danlos Syndrome makes us tired.  Really tired.  You go to bed exhausted, you wake up tired.  Subsequently, essentially we are not ‘morning’ people.

We try to have a relatively gentle start to the morning, it takes to work out what joints are doing what, what hurts, where upright is.  Some days it’s easier than others, for all of us.

Getting dressed is a bit of a challenge most days.  Children with EDS can find the everyday tasks of getting things on really tricky,  Muscles that don’t do what they want them to just makes things difficult, joints that bend backwards, fingers that struggle with the fine motor skill tasks like buttons and fastenings.  Sometimes the process of getting dressed itself is so much that remembering the sequence that everything goes in becomes a massive obstacle.    For adults, it’s the fiddly bits (try doing up your bra when your fingers bend in the wrong direction) or the balance that you need to put your trousers on.    For anyone with EDS that you see dressed, they’ve probably adapted, cheated or worked their way around something that causes them pain or difficulty – or had some help.

Breakfast.  Some people with EDS will have tummy problems so their breakfast may well be tailored to suit that.  Other than that you’ve got the challenge of actually getting the food into your mouth.  It’s a combination of fine and gross motor skills – getting your spoon to the cereal, the cereal on the spoon and the spoon into your mouth is a high risk exercise.  Some with EDS will have no problems with this at all, others (and I’m talking my house here) will be wearing their cereal, will have dropped their toast and possibly spilt their drink at some point in the morning.  Most days.  School uniform is rarely spotless but as it’ll come home covered in lunch and then be covered in dinner, life is too short to change!

Getting to work/school – it all sounds so straightforward.  In the 300 yard walk to school the chances are that one of us will trip, stumble or drop something.  Add something ‘cool’ like taking the scooter to school (thinking as a parent, ooh, a bit of extra physio = win) can make the journey so protracted you may have well left the day before.  Our record is 30 minutes to do 300 yards.  Others won’t be able to do that walk because they are in too much pain.  Being able to drive assumes that your joints are in a fit state to do so and medication doesn’t impair your judgement.

I wrote last week about children with EDS in the primary school setting and how important it is to understand what they may need or be going through.  You can read that post here.  At work there is a job to be done and in order to keep that employment, the job gets done.  For those with EDS, a job that another, non EDS employee finds routine may be utterly exhausting, painful or time consuming.  For a parent of an EDS child, the working day is punctuated with a generally long ‘to do’ list that somehow has to be completed in the same working day as which you are employed.    Finding an employer who understands the constant round of appointments, surgery, assessments, school meetings and such like is a truly wondrous thing.

NHS appointments lack flexibility – there are an awful lot of people that need to be seen and those much valued health professionals have their own lives and families.  There generally isn’t the option of saying “oh, could I come next Thursday afternoon instead of on Monday morning”, Monday morning it will be if you want to see that professional.  For a service we are so fortunate to have, Monday morning is generally just fine but you have to juggle working hours, education, transport and all that goes with getting there.

Today I’ve been following up a call from our physio team and block booking a number of sessions for a combination of physiotherapy and occupational therapy.  To be done after a certain amount of schooling and on the day when both our therapists can work together.  It’s a 1 hour window.  Then a quick meeting at school to make the plans to make this work – coming out of school for that window without interrupting too much learning or assessment time.   The maintenance of the lines of communication between everyone involved is an enormous task as is keeping track of all the paperwork involved.

Children with EDS fatigue so much faster than their peers.   Their peers are tired after school so the natural pattern would be to come home, chill out on the sofa and enjoy some downtime before dealing with the challenges of homework, spellings, more physiotherapy, occupational therapy exercises and such like.  However rest isn’t always good so extra activities, especially physical ones are seen as great in terms of building up muscle strength and therefore reducing the fatigue.  I may have uttered the words “vicious circle” before now.  There can also be extra tutoring and educational support to help the children keep up with their learning because they are unable to in the normal classroom environment.

Then after all this you’ve got to try and get food in your mouth again.  Get undressed, washed, into pyjamas and into bed.   Except you’re so tired that keeping your balance to get legs into the right holes is really hard.  Administer or take the correct drugs, make sure whatever ‘kit’ you may need during the night is in the right place.  Then lying down hurts because you’re body is so tired that the joints won’t hold in place.  So you won’t necessarily sleep well, and then you’ll wake up, yes, you’ve guessed it, tired again.

Having EDS doesn’t mean that life stops.  It doesn’t mean that it’s all doom and gloom and that what you can do is overwhelmingly limited.  It’s just our day is a bit more challenging and perhaps a bit more painful than what someone else might call normal.  Going to the park, going to the pub, socialising, holidaying, pretty much whatever you like is, with a bit of planning and perhaps a few adjustments quite possible – just like other people do in their ‘normal’ day.

This adventure playground was a test of stamina and gross motor skills. He was utterly exhausted when he'd done it, his hips were hyper-extending so much his feet turned out and he was so tired he could barely speak. But he did it, and loved it and it did wonders for his confidence. Just a 'normal' day really,

This adventure playground was a test of stamina and gross motor skills. He was utterly exhausted when he’d done it, his hips were hyper-extending so much his feet turned out and he was so tired he could barely speak. But he did it, and loved it and it did wonders for his confidence. Just a ‘normal’ day really,

Doughy skin, poor muscle tone, hypermobile, poor fine motor skills, poor sequencing, physiotherapy requiring, occupational therapy requiring, speech therapy requiring, podiatrist requiring Ehlers Danlos Syndrome Type III patient. Can you tell?

07/05/2013
by Jenny; Cheetahs In My Shoes & Just Photos By Me
41 Comments

Ehlers Danlos Syndrome at Primary School

It must be really hard being a SENCo (Special Educational Needs Coordinator) at a Primary School.  On top of your normal teaching and management responsibilities you have the responsibility of overseeing the care of a collection of children who specialise in being as un-straightforward as they possibly can.  Some may come with a condition with a name that you know and/or recognise.  Perhaps you’ve ‘come across one’ in your career or have knowledge from a training course, a friend, an article…something.  And then you get my children with Ehlers Danlos Syndrome – and atypical EDS at that and a blood disorder that doesn’t have a name.  It can’t be easy and I can’t imagine you get up in the morning thinking “wooohooo, I’ll be dealing with x today” (if you do, I salute you).

The thing with EDS is that essentially it doesn’t ‘show’.  If you haven’t got a limb strapped up, in a splint or obviously bending backwards, it’s often not an easy call to spot the child with it.  You wouldn’t notice that their skin is probably a bit (or indeed, very) doughy – like well kneaded bread before it rises.  You may not notice that they hold the pen in a different way, you may not notice their bruises don’t get better very quickly nor do their playground scrapes heal well.  You might just notice that they crash into things and fall over a bit more than the other children in their class, but the younger the child is, the less this will stand out.

You might notice that they can’t keep up as well in PE, that their gross motor skills aren’t quite the same as their peers and that their sense of balance is erring towards the decidedly unbalanced.  You might notice that their fine motors skills aren’t quite there but you couldn’t put your finger on what was wrong.  Their parent might tell you about some odd tummy symptoms or that their child reports pain in joints, despite you not seeing any injuries or excessive use.

But on the other hand you might not.  The thing with EDS is that it pretty much presents differently in every person who has it.  Some people can do amazing ‘double jointed’ partial disclocation of joints tricks; “put their shoulder ‘out’”, “put their ankles behind their necks” – often with absolutely not pain or discomfort at all.  Other things like yawning may partially dislocate their jaw and be excruciatingly painful or just carrying a bag or walking upstairs may be stomach churning.  It doesn’t show though – unless you see an hand hanging off a wrist at an interesting angle and the owner of said wrist either looking very pale or saying “hang on a moment, I’ll just put my wrist back”.

A primary school child may be too young to have a formal EDS diagnosis but if it’s mentioned, there is probably a strong chance that either the parents or medical professionals are just biding their time.  It’s not a condition that, at an early age, can warrant an instant diagnosis.  All children are hypermobile to some extent and as is well documented, all children develop at different times.  The difference between a diagnosis of ‘hypermobility’ and ‘Ehlers Danlos Syndrome Type III’ is a tricky one as EDS is sometimes known as Benign Joint Hypermobility Syndrome.  Benign in that it is not cancerous – not that it doesn’t really do anything.  It can be completely and utterly debilitating both for body and mind.

EDS is a hereditary condition but doesn’t present consistently through generations.  For example my main problems are joint instability, pain management and mental health issues.  My children present with immense fatigue, some joint pain, severe hypermobility and joint instability but only in some joints and gastro oesophageal reflux.  How this in time will change I don’t know.  I am aware that there is research going on into the significantly increased chances of children with EDS having mental health issues due to the way that some hormones travel through connective tissue in the body.  Therefore, in the primary school setting, keeping a careful eye over the way that the child is integrated into the school setting, included in activities and how friendship issues are managed could be key to helping that child avoid some of issues that may arise as they move towards puberty and continue into later life.

What you might not see is the file of letters at home that the parents have from numerous hospital appointments and assessments.  You may not see the diary packed with before and after school appointments.  You may not realise that the child is doing extra physiotherapy and occupational therapy and has been doing so for months or years to get them to the place where they are when you first meet them.  You probably won’t see the specialist cutlery at home, the weights tucked away under the bed for exercises or the little adaptations that the child has to make when going up or down the stairs that you don’t have at school.  You won’t see the kitchen cupboards that look more like a pharmacy and you won’t see the parents up at night comforting a child in pain.

EDS patients are well known for their coping strategies.  We find ways to do things.  Some of those things will see us through life with no problems, others need to be corrected – but with gentleness and compassion.  Trying to make your body do something it isn’t used to is not easy.  When the message leaves your brain correctly but gets confused on route to where it’s going that’s frustrating and, if not well managed, demoralising.

The thing is, the chances are that the child that you see won’t be failing.  They won’t necessarily fall into the bottom slot of your statistics, the demographic that causes most concern to you in terms of welfare.  That child may be taking part in a ‘normal’ school routine.  They probably won’t admit they’re in pain or struggling and their concerns will quite often be completely ‘normal’ for their age.

That’s not to say they don’t need support.  No child should have to fail before they get support (go and read this article by Renata from Just Bring the Chocolate on that very subject) and the question that should be asked is not ‘is this child failing?’ but ‘is this child reaching their full potential?’.  Is there something you as the SENCO could do to make life better, easier, less painful, more inclusive?  They might be able to take part in sports day, unaided but how much pain will they be in afterwards, how will they feel about coming last?  More practically, they may be able to sit their assessments in a ‘normal’ time frame but is pain, fatigue or their coordination difficulties going to mean that they don’t achieve their best?

Resources available for EDS patients and their parents aren’t great.  It’s really hard to write manuals and guidance on a condition that varies so dramatically between patients.  If you have a look on my Links page there are various organisations who can help.  Having a child diagnosed with a rare condition is horrible – having a child without a diagnosis is even harder.  It’s not ‘just’ the child in your care that lives with the condition – it’s their entire family.  Other siblings may also suffer, as may the parents.   Leaving your child in the care of someone else is a daunting prospect, let alone when medical conditions are involved.  Add in the pressures of academic achievement and your role of SENCO becomes even greater.   Even though the condition may not be visible on a daily basis.

I’ve written this because May is Ehlers Danlos Syndrome Awareness Month.   It’s a condition that isn’t well understood so ask questions, ask the parents, ask other professionals, ask the child, encourage honesty, be transparent in what you do and admit that you don’t know…  I can’t give the answers, every child is different but more importantly, every child matters.

Doughy skin, poor muscle tone, hypermobile, poor fine motor skills, poor sequencing, physiotherapy requiring, occupational therapy requiring, speech therapy requiring, podiatrist requiring Ehlers Danlos Syndrome Type III patient. Can you tell?

Doughy skin, poor muscle tone, hypermobile, poor fine motor skills, poor sequencing, physiotherapy requiring for strength and gross motor skills, occupational therapy requiring, speech therapy requiring, podiatrist requiring Ehlers Danlos Syndrome Type III patient. Can you tell?  Thought not.

 

 

 

Sunset in St Albans through the trees

04/05/2013
by Jenny; Cheetahs In My Shoes & Just Photos By Me
4 Comments

St Albans Sunset

It’s been a while (like, well, the last 6 months or so) since I looked out the window and saw the most beautiful of sunsets.  Although we’ve had some lovely winter sun, the sunset tonight seemed to herald the beginning of summer (sorry for whatever curses I’ve now brought on us all, if it rains, it’s not my fault).

My Facebook feed has been full of pictures from fellow bloggers and friends who’ve been out instagramming, with their camera phones and with their whizzy cameras capturing the beauty of it.  Wispy cloud, pink skies – here’s to some more beautiful evenings in 2013.

Sunset over St Albans 2013-05-04 Sunset in St Albans through the trees Sunset over the roof tops in St Albans

Meet Tesco

03/05/2013
by Jenny; Cheetahs In My Shoes & Just Photos By Me
11 Comments

Blood on the Walls

Tonight the Cheetah Keeper had a nosebleed.  This is, as you probably know, situation normal in our house but it makes it no ‘better’.  There is nothing ‘normal’ about hearing the words “nosebleeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeed mummy” being shouted, during the day or during the night.  It’s worse during the night – going from deep sleep to a fully functional, calm and un-shockable mummy is easy, going back to sleep is nigh on impossible.

Turning over the pillow so you don’t have to change his bed, covering over the bloodied sheets with a fleece blanket so he can go back to sleep – the syringes strewn around his room and the pile of swabs used to absorb the steady flow of blood that comes from his nose piled up amongst his favourite books.  It’s not nice.   The worst bit is changing the bed the next day and finding the splattering of blood down the walls and over the carpet that I missed during the night.  It wipes off, it washes out but the idea of your child shouting so much that the blood dripping from his nose travels a couple of feet is grim.Nosebleed

Knowing why it happens kind of helps – the Cheetah Keeper has a platelet function defect – essentially it means his blood doesn’t clot properly – and when it does clot the clot doesn’t stay in place.  That mixed with the Ehlers Danlos Syndrome that, despite him not really being old enough to officially ‘label’, is clearly present makes for a pretty ropey set of blood vessels.

As it’s Ehlers Danlos awareness month, I’m going to try and explain it a bit more… go with me here…

So essentially, blood vessels are like hosepipes.  Ehlers Danlos syndrome makes those hosepipes too bendy and where they bend (which is way to frequently) they get weak.  When the Cheetah Keeper grows the bendy hosepipes get stretched and even more vulnerable.  In his nose, the blood vessels are close to the top surface and so with a bit of change of blood pressure, anxiety/stress, a bit of an ‘investigation’ (he is a boy after all) or a bump out the blood whooshes.  He doesn’t seem to be affected by changes in the weather and not to a great extent by changes in temperature which are common causes of nosebleeds in people without the condition.

The platelet function defect (it doesn’t have any more of a grand name than that) means that instead of the platelets in his blood going “ooooooooooh, nosebleed, let’s dash there and stem the flow” they go “oh, how jolly, a nosebleed, we’ll tootle down there and see what we can do to help”.  When those platelets get there they try and form a clot.  The problem being that the Ehlers Danlos Syndrome makes the edges of the blood vessels possibly the worst thing to form a clot on.  Ever.  So when the clot does form, it won’t stay in place.

That’s where the medicine comes in.  Tranexamic Acid.  The ridiculously hard to get hold of (for the first couple of years I had to go up to Great Ormond Street Hospital to get it – now it’s made for him and delivered to our local pharmacy) magic raspberry flavoured and sugar loaded liquid that acts like glue.  3 doses a day for 7 days after a bleed.  If there’s another bleed in those 7 days we up the dose and keep going for another 7 days.

Then we stop.  It used to be that we could go a few days, maybe even weeks without a bleed.  Today it was less than 24 hours from the last dose to the nosebleed.  I said the Cheetah Keeper it’s beginning to look like we’ll have to go back to GOSH for a blood test – he cuddled his beloved Tesco cuddly giraffe extra tight and said he didn’t want to go…. I know how he feels.

Meet Tesco

 

01/05/2013
by Jenny; Cheetahs In My Shoes & Just Photos By Me
14 Comments

Ulnar Nerve Transposition with Ehlers Danlos Syndrome

Blimey – there’s a title for a post.  I shall award myself 0/10 in the short/concise and to the point rankings.

Anyway, I’ve been missing in action for a while.  Longer than I planned and it’s time to tell you why – in a bit more detail.  *warning* this post contains medical stuff and a picture of a very big scar.  If you’re squeamish, either grab yourself a brew, something to steady yourself and settle down for a read, or go and look at some pretty pictures on my photo blog instead.

Firstly – a bit of history.  4 and a bit years ago I had surgery on my right wrist to try and reduce the amount of pain I was getting during normal tasks – things like lifting, typing and generally just being.  The children were nearly 2 and nearly 4 and the constant lifting and carrying combined with the hypermobility I have due to Ehlers Danlos Syndrome (EDS) was causing all sorts of problems.  When they operated (through 4 of the tiniest holes I’ve ever seen) they found a tear in the tissue in the joint (and fixed it) and dealt with some scar tissue that was causing restricted movement.

I’d had a couple of other lots of surgery on that hand before and because the EDS causes excessive scar tissue in me, I knew that it was never going to be 100% – but I wanted to get to the best it could be – to continue my piano and trumpet playing.  I got back to playing relatively quickly and dutifully attended all my hand therapy appointments.  The EDS makes all my tissues extra bendy so getting strength and control back after any injury, knock or surgery is really hard and getting back to playing is really good physio – as well as, so my GP constantly reminds me, good for the soul.

Within about 6 months I thought my carpel tunnel syndrome was returning in my right hand.  I’d had both hands operated on (at the same time) in 1999 and the dreaded pins and needles were returning.  Lots of tests later and several appointments with the surgeon we concluded that it wasn’t carpel tunnel syndrome, rather it was the other nerve in my hand causing the problems – the one that travels through your elbow and down your ulnar bone to your ring finger, little finger and outer edge of the hand.   Lots of tests and lots of ‘watchful waiting’ (that’s an NHS term for let’s hang on and see what happens for a bit) later the tests proved inconclusive but I could no longer play my cornet and piano was a struggle – quite simply I couldn’t rely on those fingers to keep up with what I wanted them to do.

So we decided they would operate – just a ‘little’ operation to release the nerve that was causing the problem in my elbow.  It wasn’t pleasant but relief was pretty much instant after the initial pain of the surgery had gone – I was back playing the piano within a fortnight (ok, not the cleverest of moves but I could do it) and then, a few months later, the pins and needles came back.  Cue more tests, more watchful waiting, the surgeon leaving and a new surgeon arriving.  Much talk of excessive scar tissue and the nerve getting squished (that’s a technical term)

So in November we sat and talked and I wrote about the importance of compassion and how wonderful this new lady is.  We scheduled the operation, called an Ulnar Nerve Transposition, for early February to give the Sealion Keeper a chance to recover from having her tonsils out.  Then the date moved and just a day after she went back to school, I went in to hospital to have the nerve moved from where it was causing trouble (and so I discovered was being trapped by scar tissue and other ‘stuff) to a new, purpose built, home where it couldn’t cause any trouble.   I had grand intentions of blogging through the recovery but it didn’t quite work out…

I’d done an amount of research on line prior to the surgery – what to expect, pain, recovery times etc.  It seems that the surgery is carried out more frequently in the USA than here in the UK and the results are varied.  There are some clinics that suggest you can return to driving and work after 2 weeks  whereas I had been given, pre-op, the minimum of 6-8 weeks off driving and working to allow a reasonable recovery.  Maybe that’s why the success rates seem lower in the US – or maybe disgruntled people blog and write more!

With me, EDS means that pain relief doesn’t work particularly well, recovery takes longer and that I’m susceptible to excessive bleeding.  Scar tissue doesn’t form properly, stitches don’t hold properly and generally operating on me is a tough job.  My surgeon had planned accordingly and the duty anaesthetist phoned a friend to come and help.  Despite this being surgery 18 it makes it no less terrifying and the general offensiveness of those waiting around me in the ward didn’t help.

They missed a load of veins, sedated me, gave me a nerve block and then about 2.10pm put me under.  I got to the ward at 7pm.  This was not a small operation.  Once back on the ward I dissolved and got through that night on a mix of oromorph and twitter – my grateful thanks to Cas from Mummy Never Sleeps (I don’t think she does) and Aisha from Expatlog and a load of others to whom I apologise if I wittered rubbish.

They let me out the next day.  Adrenalin saw me through.   It certainly wasn’t the food…  The Senior House Officer who came to discharge me told me the operation had gone well but the stitching had proved very difficult.  They knew that the pain relief that they were sending me home with wasn’t going to touch the sides but they couldn’t send me home with what I needed – perhaps my GP could help.  (they did).  Dressings were changed a week later (stitch stuck to the adhesive dressing – eeeeeeeeeeeeeeeeeeeeeeek), and stitches (all 20 of them including 10 that had to be dug out) removed a week later.  There was swearing.

My EDS means that I lose muscle tone incredibly fast and I knew that slobbing around with my arm in a sling for 6 weeks was going to do me no good at all – so it was a case of getting the balance right between moving around, getting on with things and keeping the pain under control.  I could lift the kettle relatively soon – typing was excruciating.  3 and a half months on, it still has it’s moments with repeated finger movement but I can lift a saucepan and feed the family…  I can drive but not great distances and if I catch the scar on the arm rest of the car I *may* swear…  Potholes are painful but I can get to work.

I think I would have recovered faster without the chest infections and possibly without the demands of a young family.  I’m not 100% by any means, but I’m only 15 weeks post-op and have picked up another chest/sinus infection.  EDS for me generally doubles the ‘normal’ recovery time for a  procedure but I’ve got nerves growing back where they should be and good ‘glide’ (that’s the smoothness and how well I can bend and straighten my arm).  I’m tired, it hurts for some part of every day and I’ve got a scar, that for the first time makes me feel very uneasy when I see it.

Ulnar Nerve Transposition Scar

No other scar has bothered me like this one has.  It makes some people go white, most have a sharp intake of breath and some ask what happened to the shark.  The clever stitching will hopefully counteract the effects of the EDS and stop the scar stretching and spreading out like my other ones have.  Hopefully the new site they built for the nerve will hold well – because if it doesn’t, there’s not really another option.

Ulnar Nerve Transposition

Decorated large cupcake

30/04/2013
by Jenny; Cheetahs In My Shoes & Just Photos By Me
7 Comments

The Cupcake Birthday Party

Last week the Sealion Keeper turned 8.  It still baffles me a little how I’ve managed to have a child for 8 years and not break them – it’s a fact that surprises me most days.  Anyway, she asked for a party at home to celebrate her birthday – just a few friends for a “cupcake birthday party”.  So I throw a few ideas around and we take to the ‘book of dreams’ aka the Baker Ross catalogue.  I agree to them decorating cupcakes (that I’ll make for them), a massive cupcake cake and, after an evening online and my credit card number, as if by magic, a massive box of craft arrived.

Cupcake bunting

The day before we decorated the cupcake blanks for the bunting – I did the letters and the family decorated the rest with permanent pens.  I’d bought 3 packs and we used the second pack as time fillers for when party goers took less time than others to finish crafts.  Pack 3 will be saved for the Cheetah Keeper’s party!

Cupcake party ready to goI was planning on getting the girls to decorate their own cake boxes and then I found these reduced by 75% to 65p per pack of 2 in Sainsburys so I made my life easier!  The girls also had a paper plate to work on and a napkin to wipe their fingers on (plus wipes).  I bought own-brand sprinkles and pink, silver and gold lustre for them.  I also put out some white fondant icing and some pink plus some cutters.  I made up a bag of buttercream for each girl (total of 3kg of buttercream between 8 bags) in a mix of flavours.

Hands washed and covered up with disposable aprons (about £2.99 for 100 on ebay) and gave a brief demonstration of how to do a cupcake icing swirl and then let…them…loose.  There was icing in their hair, they sang loudly to One Direction, they giggled, they made some epic creations.  They loved it.

I’d bought small cotton party bags from The Clever Baggers and put all the craft bits in for each girl and painted a little wooden cupcake with their names so they had their own bag for the duration of the party. They then pulled out the bits they needed as they went along and took the bits we didn’t use home as goodies.

Aprons replaced and out into the garden for a bit of porcelain painting.

painting cupcake money box

I used my cake carrying boxes to have everything I need for each activity ready – and had painted up a cupcake money box with all the different colours available so they could see how things came out.  These were a massive success and we did them straight after we’d iced the cakes so they had time to dry.

New aprons after a quick run around the garden (I’d completely underestimated how much they’d enjoy hurtling around our garden with space-hoppers and going on our slide) and we painted little wooden tealight holders.  I didn’t provide the candles – that’s a choice for their parents but lots of them thought their little Sylvanian families creatures would like to sit on them too.  The girls used a paper plate to work on and use as a palate and I’d bought acrylic gloss paints in squeezy bottles.  A plastic cup with a bit of water in to wash their brush (I had lots of thin brushes from a previous party but they’re readily available) and again, left them to it.  Their concentration was amazing (apart from the renditions of more One Direction songs) and their creations quite beautiful.

Wooden cupcake tealight holderFor those who’d finished early there was a scratch art cupcake in their bag – we didn’t have time to decorate the big funky foam cupcakes or make the cupcake bag charms.  Then it was pizza time.  2 big margherita pizzas from Sainsburys, cucumber sticks and a bowl of cherry tomatoes and they were more than happy.  Just strawberries for pudding and then it was cake time.

Decorated large cupcakeCupcake mould from Groupon, 7 egg sponge, 2 packs of white chocolate fingers, half a jar of jam and over half a kilo of buttercream.  Decorations from Sainsburys (life’s too short to make them – I am learning…)

Happy Birthday gorgeous girl

Birthday girl

Birthday girl

 

Just to make it really clear, I purchased all the bits for this party myself.  I’ve included links to the suppliers in case you want to buy some yourself and so I can make life easier for you.

 

21/04/2013
by Jenny; Cheetahs In My Shoes & Just Photos By Me
10 Comments

Taking the Cheetahs to the Hoo’s Kids Book Fest

The Cheetah Keeper, despite our best efforts, is a bit of typical boy when it comes to reading.  It has to be done on his terms and getting him to engage with a book or reading for himself can be a soul destroying exercise, which kind of misses the point.  His sister was late to reading – her Ehlers Danlos Syndrome meant that her eyes didn’t track together which makes reading really difficult, as did her speech problem which hindered her phonics education.  A change in tack for her at school this academic year has suddenly meant reading is a joy and she is devouring books with enthusiasm.

The proposal that we went to the Hoo’s Kids Book Fest today was met with great excitement by the Sealion Keeper and full on apathy by the Cheetah Keeper.  However, the suggestion that we took the Cheetahs with us was the turning point – taking your imaginary friends to a world of books and stories is the obvious perfect day out for a car load of Cheetahs.  So some big Cheetahs drove some little Cheetahs up the M1 next to us (sticking on the white lines obviously, be careful as you change lanes Mummy) and the big Cheetahs got to set some things to spot for the little Cheetahs on the trip too.  On the way there it was trees (apparently this is tricky if you’re a little Cheetah because everything looks big) and grass for the way home.  Now I thought that grass would be a really basic spot for Cheetahs – they know that it’s where the Banana People live in the summer and it’s good for running around in at the zoo.  Clearly not.  The little Cheetahs have decided that grass is blue and no amount of telling them that it’s green is going to work.

The Sealion Keeper helpfully suggested that the Cheetah Keeper gets all the little Cheetahs t-shirts with “Grass is Green” printed on them so they can look down and remember.  This was not met with enthusiasm.  Despite the Cheetahs taking on some Froggies this week to help with the washing (there must be an awful lot of socks to be washed with 2000 odd Cheetahs coming and going – apparently) extra t-shirts are not a viable option and the little Cheetahs were not prepared to wear them.  End of.

The Cheetah Keeper often tells me his imagination is what wakes him up in the morning (if it could just wait until about 7am that would be far preferable to 5.45am) and how many blank pages his imagination fills each day.  I’ve also written before about how he finds new places and people really rather stressful and sometimes his imagination is the coping strategy that gets him through – I had no idea how he’d find being in a walled garden full of tents and people with books – I hoped it would go well, that his nose wouldn’t bleed, he’d let himself relax enough to enjoy it…

Meeting up with friends from school broke the ice.  Then 45 minutes of illustration workshop with Clare Beaton had him colouring in to a standard the Occupational Therapist was telling us to aim for in the next 2 months at our appointment on Wednesday (I know he can do it now – next step, consistency).  He was thrilled.  We have brought his geometric design home to ‘show’ at school tomorrow.

We did a deal with another friend from school.  The girls went to the Rainbow Magic workshop.  The Sealion Keeper nearly burst with enthusiasm.  I took the Cheetah Keeper and his friend to the Roald Dahl workshop.  The Cheetah Keeper clung to me, then relaxed, then giggled and laughed and giggled some more.  Then he (brace yourself good reader) stuck his hand up and volunteered to take part in a story. Roald Dahl Workshop at Hoo Kids Book Festival

He volunteered.  He got chosen.  He got to be the Wolf in Roald Dahl’s Revolting Rhyme, Little Red Riding Hood.  He knew the story from the school production… he was really scary…

P1250896

And he even got to eat Grandma and sit in her bed.  Admittedly he wasn’t that keen on being shot by the pistol in Red Riding Hood’s knickers, but if you’re going to be a wolf, that’s what happens.

Roald Dahl Workshop

We came out and he (can I put this in fireworks??) asked to go and buy the book from the bookshop.  He asked to buy a book.  Huzzah, huzzah and huzzah again.  An epic success.

We’ve sat together and read Roald Dahl at bedtime tonight.  The Cheetahs seem to like it too.  His sister lay in bed, having retreated there at 6.20, bathed, teeth cleaned and wanting to read, unable to contain her giggles at the book she chose (Tom Gates Diary).  Proper proper laughter.

Having spotted Guy Parker Rees (in the queue for the toilet – oh the hilarity) who had been into school for World Book Day the Cheetah and Sealion Keeper seem to have decided he is their own personal illustrator.  Theirs.  Others may read his books but only because they allow it.  We bought Time for Tea on Planet Zum-Zee because it has aliens in it.  Presumably these Aliens know the Cheetah Keeper’s Aliens that have been living with the Cheetahs and the Banana People for some time.  Aliens seem to find it far easier to get into story books that Cheetahs and Banana People – so if the Cheetah Keeper will read books about aliens, books about aliens we shall read.

Oh, I’m gushing.   It just seemed a good idea for a Sunday afternoon out.  I spent a (small) fortune.  We loved it – for so many reasons.  The Cheetahs loved it and instructed me that it was to be put on ‘their’ blog.  It was wonderful to see my partner in cake eating Clara Vulliamy, it was lovely to see other bloggers, it was lovely to see friends from school and others from wider circles.  Let’s hope it’s the start of something amazing.

08/04/2013
by Jenny; Cheetahs In My Shoes & Just Photos By Me
7 Comments

Cheetah News

So this is it, the best part of 3 months away from the blog and it is, at last, time to bring you some Cheetah news.  The last 3 months have not been easy, for so many reasons.  Some of these I’ll talk about in other posts, some will take a bit of processing time before I decide whether or not to share them with you.

Things in the Cheetah household have been far from what we laughingly call ‘normal’.  The Sealion Keeper has recovered well from having her tonsils out; her taste sensation isn’t quite back to what it should have been but she has been virtually cold and sore throat free following her return to school.  I had my operation – an ulnar nerve transposition in my right elbow.  That’s definitely another post!  I had grand plans to blog throughout my recovery but the mother of all chest infections got in the way – oh, and it really hurt to type.  I suspect you’ve been spared the gory details so that must be a good thing.

The Cheetah Keeper has found things hard going, the upheaval, the change of routine, of Mummy not being well.  The Cheetahs however have principally not taken to the cold weather.  Having made it through the initial enthusiasm of snow and playing mini-snowballs, they all moved into the bottom corner of the their Keeper’s pillowcase and refused, staunchly to come out.  It was too cold.  I can’t blame them.  However, their Keeper needed them and if they were in the pillowcase, the Aliens would have to step up to the mark.

And they did.  These little Aliens are “cute” slime trailing smiley ones who have a taste for mischief and a generally jolly temperament.  They’re also rather fond of gadgets and tech – especially iPads and computer games (and you think I haven’t noticed the hint there Cheetah Keeper?).  Intergalactic space travel is a must but they’re always home for tea.  They seem to get on well with the Banana People (who are currently refusing to contemplate moving back to the garden as it’s frozen out there) and the Dinos who have gone off to Spain for some warmth.

As the Cheetah Keeper has found school really stressful this term, the Aliens have been to school with him – as has his beloved cuddly Tesco from whom he would not be parted.  Tesco is now allowed to watch lessons from the book corner, rather than being put away in the teacher’s cupboard  and apparently is sitting nicely and behaving well.

Meet Tesco

Meet Tesco

As of this weekend, most of the Cheetahs have headed to Luton Airport (theirs is shut for renovation work I think) and taken a flight to Norway – where they promptly got stuck because the next plane wasn’t there.  The only Cheetah who stayed behind is a loyal little chap by the name of SpagBol.  SpagBol knows where he’s required and with a trip out to play in the woods on Saturday and a party on Sunday, he just knew that the Cheetah Keeper needed him.  So he stayed – and the Cheetah Keeper stayed at the party on his own.  With the purchase of new wellies yesterday, SpagBol also went to Forest Schools today and had a stonking time running around the field and playing on the most massive zip wire that travels across the entire universe.  SpagBol is also going to report back to the others about this giant tree we found at Osterley Park on Saturday which is apparently just perfect for sliding on:

Giant Oriental Plane Tree at Osterley House

Oh, and we’ve been back to the zoo to check up on the Cheetah cubs.  The little bundles of fluff are nearly a year old and aren’t they growing up nicely?!  They make the Cheetah Keeper very happy.

Sleeping Cheetah Cubs at Whipsande Zoo

 

Like several other people I’m slow blogging at the moment – posts may not be as frequent but they will come and if they’re not on here, try visiting Just Photos By Me or Bake Yummy as I’ll be spreading my posts between them too.

01/03/2013
by Jenny; Cheetahs In My Shoes & Just Photos By Me
2 Comments

Friends Like These

Being ill is a very easy way to find out who your friends are.  Having your elbow operated on means blogging about it isn’t really possible, so I asked Aisha from Expatlogue to write about it for me.  Thank you sweetheart x

As I’m here doing a favour for a friend, it seemed like a no-brainer to muse on the nature of friendship – in particular, how it’s affected by distance. There’s nothing like moving to another continent to help you discover who your friends are.  I know it seems a little drastic, but I promise you the results will amaze.  For starters, it reignites old flames. I’m not talking about ex-boyfriends, I mean those links with the past that have gathered dust and lain forgotten – put off until a more convenient time that never came.

Before you leave, you spend your final weeks crossing miles to gasp “Hello”, and then shortly later, “Goodbye”, shamed into shouldering responsibility for the preceding neglect as penance for your heartless decision to put even MORE distance between you. For some friendships, that will be the final curtain, let off the hook by the impossibility of distance. For others it will be the start of a renaissance, the small sign that was needed to remind hearts that they were indeed held dear, if a little overlooked.

Then there are the passive/aggressive friends who become distant before you even make the ascent to 30, 000ft – some because they resent the pain of a split and can’t help but be mad at you for it, and others because they’re jealous you’re doing something they feel they couldn’t accomplish. If I had a pound for every time I’ve heard, “Wow, I could never do that…” when really, the simple fact that I’m managing it should be proof enough that a good portion of the human race has what it takes, I’d have made it to the Maldives by now.

Some people don’t go in for all that passive/aggressive mind-game stuff, preferring instead to take the opportunity to tell you to your face, in no uncertain terms, how they never really liked you anyway; that was the method favored by my in-laws at any rate.

Aaaaaanyway, as I settled in Canada, my fingers became accustomed to flying across the keys at an eye-watering rate, spilling out my awe and enthusiasm along with my confusion; so much to show, so much to tell, it was like being five again! But it’s impossible to email everyone individually, and a one-size-fits-all group email is the opposite of maintaining a close relationship. Facebook and my blog became my portals to base camp. Through FB I can still peer in the windows of my friends lives and feel involved, just as they can with me, and Expatlogue provides a platform for more in-depth explanations of all those funny Canada-isms. Together they make distance seem irrelevant.

In this new online landscape some people are just the same as they ever were, exchanging comments and funny anecdotes, sharing e-cards that made them laugh and those ubiquitous pictures of cats. Others hang back, still posting, still setting out their shingle with the one small difference that they no longer speak to you, maybe a quiet “Like” now and again lets you know they’re not laboring under the assumption you’re dead, but it’s as though their virtual radius is subject to the limits of geography.

I’ve saved the best for last here, in case you needed cheering up, after all, it can be depressing to discover everyone seems to get along fine without you.  A clear, true beauty lies in those friendships that hadn’t developed much past the initial stage of budding potential promise before you left, but that go on to blossom into something you might never have known had 3,500 miles not come and sat down slap! bang! between you.

These are the friendships where you chat online in the same way you would across the kitchen table, cradling a cup of Earl Grey, sharing thoughts and fears and triumphs while you absently trace the wood grain with a finger. The ones where you help each other out, oblivious to different continents and different time-zones, and only semi-conscious of a bitter-sweet ache, that inexplicable sense of “what if’. They’re the friends who’ll post chocolate at the drop of a hat and always know the right thing to say to make you feel understood. They’re the diamonds that make all that rough bearable!

 

 Media preview

 

Aisha Isabel Ashraf is a freelance writer and author of the popular blog Expatlogue, where she can be found strung out on caffeine, humorously dissecting the peculiarities of Canadian life for her own amusement and the benefit of future generations.

She can be contacted via the usual avenues (e-mail, Twitter, Facebook) – just swing by the blog for directions.

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