Friday, April 19, 2013

Colour Run

This year is the first time the Colour Run is being held in Australia... What is the Colour Run?  Well, the Colour Run is known as the "Happiest 5k on the planet"; it is a 5km walk/run event, but not just your average run, at every checkpoint (5 in total) you are covered in brightly coloured paint.  Sounds fun right?

My husband and myself, along with our very special friends are participating in the event as the 'Rainbow Stars' to raise money for the amazing organisation Novita (I will talk about Novita another day), who provide all the therapies for Lyla and her friends.  

Where : Adelaide - Victoria Park Racecourse

When : Sunday May 19th, 9am

Why : To have fun and raise money for your favourite charity or organisation 

How : Colour Run, join a team or participate as individual 

Please feel free to donate a few dollars to Novita and show your support 

I will try and find a group photo of us to add 


Thursday, April 18, 2013

A day in the life

On a daily basis we are judged or judge people on their physical appearance, everyone does it.  Quite often my mum & I will go to our local shopping centre and 'people watch' whilst having a coffee, but never would I stop someone and question them about their fashion choices for the day; you wouldn't would you?

I know people can't help but look or treat someone differently based on any physical abnormalities they may have, but is it okay to go up to that person and ask them for an explanation as to why they are different?  This is what I want to know, because on a daily basis, numerous times a day if Lyla and myself are out, we are stopped so someone can ask a question, or we see someone performing some kind of Exorcist neck twisting manoeuvre because they just caught a glimpse of Lyla from the corner of their eye.

Monday for example, I was sitting in the new Rundle Mall Plaza, feeding Lyla with a couple of friends, a guy walks pasts, stops, walks back, looks at Lyla points to his nose and asks "What's that for?" to which I replied "For feeding", he walks a few steps and then said "Oh I know what happens otherwise" and stands there (in a packed food court, mind you) puts his hands around his throat and pretends to choke.  Are you serious?  This is the kind of stuff I get whenever we our out in public, okay, well maybe not this dramatic, but still, I don't think its fair to be making fun of my daughter.

These are some of the questions I get or comments I overhear...
"Was she premature?"
"Is she okay?"
"What's that thing in her nose?"
"Is that for oxygen?"
"Look at that poor, sick little girl"
or my personal favourite "What's wrong with her?"

I have no problem talking about Lyla if someone ask a question, but it all depends on how someone asks me the question; when I get "What's wrong with her?" which I get quite frequently, I reply with "Nothing, she is fine" (I want to say 'what's wrong with you', but I don't have the guts).  And "Poor sick little girl", well actually she's not poor, she has a great life and she is not 'sick', in fact she has never been sick! *touch wood* At the end of the day, or by the time they walk away, they've forgotten about Lyla and they don't really care 'what's wrong with her', so why should I be expected to tell them anything?  

So the next time you see someone who looks different or acts different - like that child throwing a tantrum in the supermarket, maybe take a second to think about how your looks are perceived to that child or carer, or those questions you ask; are you asking them because you really care and want to know, or because you are nosey and want to know why they look different, or that child throwing a tantrum, did you think maybe this child has a disability like autism? 

Just a thought.


Saturday, April 13, 2013

Syndromes without a name....

As everyone is now aware, today is national 'Undiagnosed Children's Awareness Day', so I thought I share some information about Lyla's unknown condition.

Lyla's symptom or abnormality list is a long one, some are quite obvious, some are only obvious to the doctors who are looking for them and some are internal, which are only know about through blood tests, scans, etc.  We have heard a number of possible diagnosis's for Lyla, some extremely rare, which many specialist were even unaware of, to some of the more common, like cerebral palsy.  Not one of these conditions Lyla shows enough or the right symptoms for, or tests have been performed and like many, for some reason, all come back as 'normal'.  We have said from the beginning  it is just 'Lyla Poppy Syndrome', which could well be the case.  

People have said to us an overall diagnosis doesn't change anything, that is true, in some ways, but a diagnosis can provide us with information that can assist us and Lyla in terms of care, treatment, medication, development, or outcomes.  A diagnosis may also provide us with the information we need to know before we decide to expand our family - is it genetic and what are the chances of this occurring again. 

Lyla's symptoms are congenital, meaning they were all present at birth, since then some have worsen while some are not quite as severe as they once were.  Here are Lyla's most obvious or visual symptoms list...

  • Brain formation - first thought to be Polymicrogyria is now Open Bilateral Opercular Syndrome, from my understanding it means the space that divides the left and right hemispheres is larger than normal.  This affects muscle functioning in the face and throat, like listed below.  There is some other brain abnormalities, which I cannot remember.
  • Eyes - ptosis (droopy upper eyelids) due to this, people often assume she is sleepy.  Ophthalmology is also convinced she cannot see - which is absolute bullish*t!  Next appointment is in May, so I will keep you updated.
  • Breathing 
    • Stridor - a loud, high pitched noise which is normally heard while inhaling.  Caused by a 'floppy larynx, it is not as obvious as it once was, which was with every breath, it is really only heard now when she is upset.
    • Airway spasm - discovered during a endoscope procedure
    • 'Blue episodes' - This for a LONG time, and still to this day, is one of the major issues we have; often triggered when Lyla is upset and is associated with the above to breathing problems and possibly her brain.  Lyla's airways start to close causing her to not get enough oxygen and turns blue.  Once, I have had to perform CPR on her because she didn't get a breath in, in time.   We now carry O2 with us in case. 
    • Apnoea - long space between breaths, usually happens while sleeping, and may be due to her brain not always reminding her to breathe. 
  • Feeding - Lyla has always been fed through a naso-gastric feeding tube, as she has no suck / swallow reflex.  One of the main questions I am asked by people is 'when will she eat normally'. This is really the million dollar question, but also the least of my worries.  It's not that she is not interested in eating, she just can't... She does not understand it, therefore can't.  There is also a chance of aspirating (inhaling in to her lungs), which has never actually be tested or confirmed, but for that reason we've been told to give her nothing orally.
  • Spasticity - in arms and legs, which causes increased muscle tone (stiffness - hypertonicity); involuntary movement (leg spams - clonus); limited & delayed movement; contractures. 
  • Scoliosis - Lyla's spine is curved and has worsened over time; she also has 2 forms of scoliosis - kyphosis (curve protruding out of her back) and right thoracic scoliosis (spine curving to the right).  Her right curve, when last scanned, was almost at an 80 degree curve, so quite severe. 
    • Hypotonicity in trunk (weak muscle tone)
  • Bilateral hip dysplasia - both hips are dislocated
  • Global developmental delay

Here are some 'Syndromes Without a Name' [SWAN] links 

Friday, April 12, 2013

Undiagnosed Children's Awareness Day

Tomorrow, Saturday, April 13 is 
'Undiagnosed Children's Awareness Day' 
 Between 30-40% of children with special needs do not have a diagnosis.
Show your support to Lyla and all the other undiagnosed children out there, by wearing blue tomorrow. 


Thursday, April 11, 2013

'Our world from above'

I just stumbled upon this amazing post by Life with Tyler, this sums up our life EXACTLY!  Every little aspect of this defines us.

 THIS is why I want to share our story, I want people to understand we are different and Lyla is disabled and that is ok.  We have an amazing life and amazing friends and family, and just because we are up in our hot air balloon doesn't mean we, or Lyla, deserve to be treated any differently, or looked at weirdly, or be asked those questions or hear those comments, because I hear them on an everyday basis, and I don't need any ones sympathy.  
I just want everyone to accept us, and be happy and grateful for what they have, instead of worrying about what they think we don't have. 


Being a parent of a disabled child makes you feel like you are on a completely different boat to everyone else. A boat way up in the sky…..
Actually its more like a hot air balloon ride.

You start off standing in the basket all alone, wondering why you have been put there.
Then you set off onto your life long journey not knowing what to expect.You get scared and you can’t get out. You cant talk to all your normal friends they dont understand, they are not coming with you. You slowly fly away from them. You can still see them on the ground but they cannot help you, you have to go up into the sky on your own with your child. The ascent upwards is very scary, all your emotions are tested to the limit. The wind pushes you from side to side and you can’t get comfortable. Fear sets in. Eventually the weather settles and the journey becomes easier. You become used to this new atmosphere over time, and you start to realise the view is quite amazing up here. It gets lonely at times, but you bump into more people in air balloons along the way, and you see that their balloons are just as brightly coloured as yours. You tie yourselves together and face the journey head on with your new friends.

You can see everything and everyone a lot more clearly up here…
People sometimes say “oh I’m so sorry to hear your child is disabled.. Or I wouldn’t wish that on anyone… Or how do you do it your amazing!… Ohhh that’s so sad…that’s awful”
Well the truth is it isn’t sad. You shouldn’t pity me or my son. And being depressed about it is not going to make anything better. We have a lovely life. It’s not a bad thing, having a disabled child. Its not a curse of any kind, a punishment or karma, it’s a gift. A valuable journey that makes you a better person. But the majority of people just don’t see that.
You won’t realise this unless you are a parent of disabled child. They don’t bring you any misery at all. They change your life for the better. They give you a new kind of confidence. You don’t get it straight away, it builds over time, but it makes you gradually stronger and stronger. It makes you grow as a person, makes you more resilient. You get what a lot of others don’t have.
Your unique journey shows you what truely matters and what is most important. My son has shown me life in and out of hospitals, and we have seen some really ill children. Some that have a very short life. We watch tv programmes about disabilities and children’s hospitals as it is all familiar to us. In return this has taught us to appreciate our health. We would never do anything to jeopardise it. No amount of money can buy you a new body. We appreciate every little thing we have in life. I take a lot of things with a pinch of salt now because it really doesn’t matter anymore, little things dont usually get me down. What matters is your health, the love of your family and happiness.
Things in a way become more clear. Each day has a purpose, you think ahead and of what you want your future to hold. You have been given a higher knowledge, a perspective on life. You truly appreciate everything when you have seen and felt the worst. You look at people that complain about trivial things and think “you should know how lucky you really are!”
If people stare at your child it annoys you, but on the other hand you don’t care, you have the confidence to say something if you have to. Ive heard someone say “shes too much with him she carries him absolutely everywhere!” But this showed me that some people (not everyone) don’t even have the common sense to think of the bigger picture, they dont sit and think “what if that child is disabled?” They are naive. They think all that disabled children have to look different to be disabled, this isn’t the case. We shouldn’t stare at people who are different we should smile and admire them. They are the ones who struggle and fight the most.
You are in a different world to “normal” people, but your worlds will always collide. You feel the need to educate them about your world but some of them just plainly don’t listen. You can tell they are not interested. You know then that you ARE a better person BECAUSE of the journey you have been on with your special child. You always listen to other peoples stories, and they think their whole world is upside down when really it isnt. They havent got a clue.
When you hear stupid comments from people, it makes you stop and realise you think better than them. You know not to say certain things, or to think twice before doing so. You have moved on from the normal persons state of mind. You don’t think like they do anymore, your mind and way of thinking has become more educated. You have a special gift not many other people have, you see life very differently to others around you.
You are not judgemental anymore. You think of peoples feelings. You don’t ever pick on anyone or take the mickey out of someone for being different. Because your shoe is now on the other foot, you can see everything from all angles. You have a birds eye view from above. You know when comments are wrong and you don’t laugh at jokes. Being different is something that should be valued, if everyone were the same it would be boring.
The most annoying of all is when someone just doesn’t believe just how disabled your child actually is. Oh but can’t he even do this?? Can’t he do that? Why doesn’t he wave or clap hands? Why isnt he talking to me? surely a bit of common sense would say “hmm maybe there is something wrong with him or hes a bit behind?” But it doesn’t.
Truth is we forget about milestones, they are out the window. It would be wrong of me to compare my son to a normally developed child. I don’t dwell on what he can’t do and what he “should” be doing. And it’s annoying when other people bring it up. He is DISABLED. He is unique and he will learn whatever he wants to when he is good and ready. He is happy being the way he is and people need to learn that he is who he is and he is amazing just the way he is. He will never be “normal” so please don’t compare him. He’s not in the same box as them.

Some times people say “I don’t know how you cope” we’ll I don’t know how you cope with your child! My son is the best behaved child I could ask for. He doesn’t complain, he doesn’t shout, he doesn’t ignore me, he doesn’t run around doing things that he shouldn’t. I never have to tell him off. Where he is always with me he will always be safe.
I can go out with him and know he won’t have a tantrum in front of everyone. He will happily sit in his pram and play with things around him. He is content and happy. He may not walk or talk, but the smile on his face speaks a thousand words. It lights up my world. Just knowing he is happy at that point in time. I appreciate all the little things he does do.

People who are disabled aren’t disadvantaged. Them and the people around them have an advantage, they learn much more than an average person and are given a new perspective and appreciation of life. They are enlightened. Being different IS a good thing, you learn more being that way. All the challenges you face will only make you a better person at the end of it all. The more challenges you overcome the better.
I sometimes wish I could touch people and let them walk in our shoes for a bit. See what we have seen. Then maybe then they would realise that when we see a disabled child they make us smile. We feel normal then. We dont pitty them, they make us happy.
They are part of our world from above.

The first two weeks...

Almost 2 years ago, to the day, Daniel & I found out we were expecting our first baby.  We were close to half way through our big UK / European holiday (in Dublin actually) when we found out I was 7 weeks pregnant.  I had a completely 'normal' pregnancy, nothing out of the ordinary, not that I had anything to compare it to, but as far as we were aware we were having a healthy baby, a girl in-fact, due December 8th, 2011.

November 23rd, 2011 came by, I woke up at 5am as my waters were breaking (in bed) and contractions started soon after.  My birth plan was to have a natural labour and delivery, and a healthy baby and mum at the end of it.  19 hours of natural labour went by when I ended up having an emergency c-section, emergency in the sense that it was not planned, not that anything was wrong; I was stuck at 9 cm for close to 5 hours with no further progress.  1:07am, Thursday, November 24th, 2011 Lyla Poppy entered the world... But not as healthy as we were expecting.  This period of time was a blur for me, actually the first couple of weeks of Lyla's life is a blur to me.  Lyla was born, and as far as I knew she was 100% ok and required special care because that was what c-section babies usually required.  I was in recovery when I began to be bombarded with random questions from nurses like 'was your pregnancy normal?' or, 'did you take any drugs or medication during your pregnancy?'.  It was pretty apparent to the nurses and doctors that something was not quite right with Lyla.

Several hours later Lyla was brought to my room for a feed, which was unsuccessful.  A few hours later I was visited by a doctor who broke my heart when he said Lyla was not well, exact words I no longer remember but he was with me for some time, slowly killing me.  A few minutes later my husband and mum arrived and I somehow had to tell them what I was just told.  I was finally able to get out of bed, have a shower and go around to the special care nursery and see my daughter, she had a naso-gastric tube inserted, but she was perfect and beautiful and no matter what anyone said to us, or the amount of bad news we received it did not change how we felt for her, 'healthy' or not.

That night Lyla and myself were transferred from Lyell McEwin hospital to Women's and Children's Hospital, where she spent the next week in ICU and SCBU.  Lyla underwent a number of MRI's, EEG's, lumbar punctures, blood tests, x-rays, eye tests, muscle tests and anything else that they could possibly do to her during that first week; and we were met with a range of doctors and specialists, who all had some kind of bad news to share with us.  We were told Lyla's brain had not fully developed which will leave her severely disabled and her life expectancy would be anywhere between a few months to 1 year.  We fought to get her home as soon as possible, but firstly she required another stay at Lyell McEwin Hospital.  Another week on we were able to bring Lyla home and we quickly settled into everyday life.


Lyla is now 16 months old, beautiful, cheeky, feisty, for the most part healthy, but most importantly, alive!  She has not hit any of the major milestones, but that means nothing to us, it just makes you appreciate the smaller things she can do... Like the first time she opened her hand (slightly), or tracked us as we walked past her, which was only 7 or so months ago.  These are the things people take for granted, but for us, these are the biggest achievements. 

No one can ever prepare themselves to be blessed with a disabled child, yes blessed!  And even though we had no prior warning, Lyla was welcomed into our family just like any child. 

I hope by starting this I can shed some light on disability and let people know it is not a disgusting thing, and these special children are no different from any other child, though they may look a little different, or walk a little differently, or eat a little differently.   I also hope by spreading some of the little knowledge I have, will help families who may be in similar situations and let them know they're not alone and there is amazing support out there.