Happy Friday!

It’s been a pretty good week, a few steps forward, a few steps in plateau.  I’m becoming better at accepting that being in plateau is not such a bad place, it’s better than a ‘few step backwards’, which was the norm in the early days.

HHE is very unlike anything I ever imagined in the early days of DX days.  It’s now just a way of life, it’s apart of us and we just try the best we can every day, some days are better than others.

And that leads us into another great song…

U2 – Some days are better than others

photo credit: theodysseyonline.com

 

 

A quick re-cap- what’s this all about?

So what’s this all about then?  This 10 Feet Tall business?

  1. Firstly, I have wanted to bring wider attention to HHE for a while now – in fact, for about the past 3.5 years!, in some type of web page format – I just never quite had the ‘ah hah’ moment until, quite literally, a couple of weeks ago;
  2. Secondly, after the trolley petition of last year, it got me thinking about other ways that things need to change to encourage inclusion in our community.  If there was ever a ‘good time’ to be in a shit-storm, then I’d rather be in this era, right now.  We have great researchers, doctors and medical professionals fighting the good fight. They are doing incredible things in medical science helping those with many illnesses and conditions including rare and aggressive forms of epilepsy; and
  3. Thirdly, 10 Feet Tall is not just about our experience as a family but it’s about yours too.  What’s it like to be a brother, sister, Grandparent, Aunt, Uncle, cousin or friend of a 10 Feet Tall Kid?  Remember, when you support us, you boost us up and together, we are 10 FEET TALL.

**Pic is of me with my cousin Scotty.  He took me to the Madonna concert in Brisvegas earlier this year in March, which was one of  the best moments of my life – seeing an all-time favourite performer that I’ve grown up with – it took me back to when life was oh-so-simple and carefree!  

 


Danger certainly is determined!  Described as non-verbal, he now has about 25 words and a dozen or so Pic Com Signs.  Mikey needs a lot of sensory feed back with any task that he undertakes.  Simply speaking, he needs to move to feel his body is working.  He needs to do about 5 laps of a room, settle down for 2 minutes then do another few laps.  It is a very trying time for him to learn new things and to retain this information. Coupled with his hemiplegia it’s a fine line between appropriate sensory feedback and pure exhaustion! His muscles use 3 times the amount of energy due to the hemiplegia and brain signals to those parts of the body.

For about the past 12 months, we have been working on how to dress/undress independently.  Helping him with this technique is paying off.  While getting ready for a bath, I stand back and watch him struggle, I grin and bear it and encourage him to try.  He manages to pull off his t-shirt using is unaffected hand, over his head, unaffected hand down his hemi-side, then he shrugs it off with his other side.  He then puts it IN the dirty laundry basket – even his own dad doesn’t do that!

The sense of achievement he feels while being able to now do these simple self-care tasks is a huge accomplishment for him.  He will be 5 years old in September so to be able to dress independently, is another right step towards his independence.

One of the best pieces of advice I was given from a therapist was to use a dressing chair (just a cheap plastic kids chair).  As it usually gets chucked down the staircase twice a day, plastic is best… but it does work as it gives him the stability to dress/undress that he otherwise wouldn’t have.

Perseverance pays off – Mikey, lead the way mate!

 

cropped-image1.jpgLast week Mikey D was very lucky to meet the Titan’s Cheerleaders at the Gold Coast Bulletin Fun Run.  Mikey has an ability and cheekiness that draws people to him.  As he’s getting older, he’s getting much more aware and confident.  He said ‘hi’  as we were going up the stairs, as they were running down and they stopped and chatted to us – he was very pleased with himself.

His big sis was doing the 1km junior dash and raising money for the CPL.  Her inspiration to run and push herself like this physically (which she sure doesn’t get from me!) is because, she tells me tonight* ‘I want to help Mikey and I have a friend at school that has CP.  I want to help other people with CP by doing my running for them’.

As we said goodbye to the Titan Cheerleaders, he wouldn’t let go of one of their pom-poms, and we had to prize it off him. The cheerleader said to me ‘he won’t cry will he? I don’t want to upset him’. Mikey chuckled, let go and yelled ‘bye!’.  I think Mikey felt sorry for her!  Little did they know, that they were lucky he only grabbed a pom-pom… and nothing else…

*After her interview with me tonight, which she is happy to share on this blog, she asked what her fee should be for further interviews!  Obviously, her father’s daughter 😉 

Danger is his middle name!

Why did I start this blog? 

I started this blog as a way to put into words what has been happening in our lives since the day it was turned upside down.  Also, sometimes when your life is turned upside down, there is a way you can try to turn it around and even, embrace it?!  It takes time, it’s a process and I could never have done this 12 months ago – things were still raw, some things still are and most likely always will be, but as my Grandad used to say ‘nothing ever stays the same’.

A bit of history – I will try and make it the ‘quick version’ – like the labour(!):
In the Spring of September 2011, I went into labour with my twins at 32 weeks – Twin 1 – aka Michael Danger and Twin 2 – aka Jasmine Jazzie Erica were born.  In hospital for 3 months, we were then able  to take our babies home to make our family of 3 to 5!

Jazzie was sickly, I mean, really sickly.  In and out of hospital every 4 to 6 weeks with breathing problems, failure to thrive etc.  Tested for everything under the sun, then at 19 months old, it was discovered she had 2 holes in her heart.  Open heart surgery was booked in for a month later, and we haven’t really looked back since.  The Pocket Rocket had arrived!

While all this was going on, Danger was developing very well, reaching typical milestones along the 7, 8 and 9 months mark, then at 10 months old – it happened.  I discovered him in his bed and I had every parent’s worst nightmare… I approached his cot, my heart pounding and I thought for a split second, he had not survived the night.  As I moved closer, I could see he was breathing, head and eyes rolled back, blood over his sheets.  His perfect little body perspiring and convulsing.

We did what we had to do over those next few weeks.  In hospital, they gave Danger the medications to stop the seizures, but they kept re-occurring.  There was a code blue called (which Bryce was so traumatised about he never told me until many months later).  Again, we thought we had lost him, but he was a fighter.  He was born fighting.

Once they found the right fit of anti-seizure meds, we were in hospital for 2 weeks, with our little boy who was paralyzed down the right side of his body (the introduction to our education of hemiplegia cerebral palsy had begun as with epilepsy).  He lost his ability to speak and other functions.  He underwent many tests – EEGs, MRI’s.  We waited 12 months until we got a diagnosis (DX) – we were one of the lucky families – some people go years, even a lifetime, without ever receiving a DX.

It was August 2013 when we received the confirmation that Mikey’s diagnosis was classic HHE Syndrome.

Great we thought – we had a name, but now what?

Google, online medical journals and late nights became our friend…. Bryce and I found what we could on the internet but… it wasn’t much.  That’s the thing with rare diseases, there well, rare.

I started a small Facebook page to update family and friends but closed that down during a family crisis, that lasted a few years – more of that later.

We seem to have come out of the other side, and here we are – HHE support pages were started and are now active in both Rare Voices Australia – RVA and Rare Connect

I couldn’t have done it without the support of my husband Bryce, we have different ways of coping – I tend to scream from the mountain tops and he tends to dig a hole at the bottom of the mountain 😉  He is my partner in crime through all of this.

Whatever has brought you to this page, thank you for reading up to this point!

If you are in this situation yourself, or know someone who may be – just know you aren’t alone – check out the links to RVA and Rare Connect, if you can’t find what you’re looking for – create it – you will be supported along the way by this incredible community of fighters and their families.

10 Feet Tall

Hi, welcome to my blog!

At some point in time, we all stand at the base of the metaphorical mountain and think ‘How is this going to go? How are we going to tackle this? I need to be 10 Feet Tall to do this!’

Then it happens, the realisation that it’s not us but actually our children who are 10 Feet Tall. We are their guide, their advocate, their biggest supporter. Our kids teach us how to be fierce, unique, embrace life and keep fighting. In fact, they teach us to be 10 Feet Tall.

Parenting children has its challenges. Parenting children with additional needs/special needs/medical issues has its challenges. Let’s just all agree, to well, agree!

I have created this blog to help promote awareness and give hope there is a way to move forward if you feel ‘stuck’ ‘helpless’ and down right ‘fed up’.  This blog’s aim is to encourage you to dance in the rain while weathering these storms in parenting.

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