My first ever blog! What an achievement this is in itself!
The aim of this blog is to share my story with friends, family and followers who may be interested in my story and the upcoming chapters!
The past year has been incredible. Although extremely tough at times I have met some amazing and inspirational people. Life has changed full tilt, however it's certainly for the better. With a diagnosis of Infantile Spasms at four months old, it has led me to discover the world is so diverse and things should NEVER be taken for granted.
My mummy has brought such knowledgable and loving people into our lives, and she'll now acknowledge them:
Reflexologist
Craniosacral Therapist
Naturopath, Herbalist and Mentor
Accupuncturist
Chiropractor
Massage Therapist
Hypnotherapist
Physiotherapist
Speech Therapist
Occupational Therapist
Social Worker
Neurologist
Paediatrician
Gastroenterologist
We have been attending Xavier Conductive Education, Mt Gravatt, Brisbane and can't speak highly enough about the staff there. They work so hard and give so much love and attention to the children.
Also we have attended our first ABR (Advanced Biomechanical Rehabilitation) clinic in Sydney during November. I will speak more about this in a future post. I can say that it was unbelievable and I am already noticing improvements, and met some amazing and inspirational families.
That's it from me for now. I will be back soon, believe me, this story is far from over!
Small Sisters
Sisters
Wednesday, December 22, 2010
The story so far...
July 2nd 2009, what a special day. Today was the day I came into the world and finally met my parents and doting sister, Sophie. I'd like to now share the story with you, so this is how it goes...
From then until now is a story by far, but seems to have flown like a high speed car,
With ten fingers and ten toes, a pouty mouth and cute button nose,
What a miracle I was, like any baby born, feed me, cuddle me, ahhhh yawn zzzzzz,
I love my sleep, playtime and friends, but who knew this was soon to end.
I was getting so strong and developing well,
until something happened and went off like a bell.
At nine weeks old I began to feel ill,
When asking for help I was handed a pill.
Excrutiating pain ran through my spine,
If only we knew what had happened at the time,
From the top of my head to the tips of my toes,
I wish someone had helped with my mummy's woes.
Doctor here, nurse there,
specialist appointments everywhere,
Colic or reflux, food allergy or intollerance?,
Are doctors really the experts? Please excuse my ignorance!
At sixteen weeks nothing improved,
In fact I was in a worse kind of mood.
Nonstop screaming and pain oh so sore,
It's hard to imagine what's through the next door.
Rushed to hospital, bright lights everywhere,
What's going on? we had absolutely no idea.
Then the time came where blue turned to grey,
Please oh please would it all go away.
Diagnosed with spasm and seizure activity,
It was all too unthinkable for my mummy and daddy.
What did this mean, where is our future now?
So many questions like why when and how.
The next few months are quite a blur,
Too much to mention, or remembering where we once were.
All I can say is what a journey it's been,
But this world is a place with lots to be seen.
No matter my diagnosis,
or suggested prognosis.
I know now for certain,
I'm opening this curtain.
No more darkness or sadness or tears on board,
It's now time to be positive and cut that cord!
My Mummy and Daddy and Sister Sophie,
Will start the story of Realising Ruby......
With love and great thanks to my Nanann and Grandad who have stuck by me, my Aunty Emma and Uncle Nancy for their continued support and positive thoughts, my dearest friends who believe in me, no matter what may be perceived by some, my wonderful therapists who just work wonders and the staff at ABR who do a wonderful and fulfilling job of giving realistic and achievable hope to families.
From then until now is a story by far, but seems to have flown like a high speed car,
With ten fingers and ten toes, a pouty mouth and cute button nose,
What a miracle I was, like any baby born, feed me, cuddle me, ahhhh yawn zzzzzz,
I love my sleep, playtime and friends, but who knew this was soon to end.
I was getting so strong and developing well,
until something happened and went off like a bell.
At nine weeks old I began to feel ill,
When asking for help I was handed a pill.
Excrutiating pain ran through my spine,
If only we knew what had happened at the time,
From the top of my head to the tips of my toes,
I wish someone had helped with my mummy's woes.
Doctor here, nurse there,
specialist appointments everywhere,
Colic or reflux, food allergy or intollerance?,
Are doctors really the experts? Please excuse my ignorance!
At sixteen weeks nothing improved,
In fact I was in a worse kind of mood.
Nonstop screaming and pain oh so sore,
It's hard to imagine what's through the next door.
Rushed to hospital, bright lights everywhere,
What's going on? we had absolutely no idea.
Then the time came where blue turned to grey,
Please oh please would it all go away.
Diagnosed with spasm and seizure activity,
It was all too unthinkable for my mummy and daddy.
What did this mean, where is our future now?
So many questions like why when and how.
The next few months are quite a blur,
Too much to mention, or remembering where we once were.
All I can say is what a journey it's been,
But this world is a place with lots to be seen.
No matter my diagnosis,
or suggested prognosis.
I know now for certain,
I'm opening this curtain.
No more darkness or sadness or tears on board,
It's now time to be positive and cut that cord!
My Mummy and Daddy and Sister Sophie,
Will start the story of Realising Ruby......
With love and great thanks to my Nanann and Grandad who have stuck by me, my Aunty Emma and Uncle Nancy for their continued support and positive thoughts, my dearest friends who believe in me, no matter what may be perceived by some, my wonderful therapists who just work wonders and the staff at ABR who do a wonderful and fulfilling job of giving realistic and achievable hope to families.
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