Tag Archives: awareness

Awareness for Kody

My names Brooke and I’m a mum of three from London.

I was 18 when I had my first baby, Jayden. I had a straight forward pregnancy only suffering with extremely low iron, causing me to constantly be tired. I had a natural, straight forward delivery, and Jayden was born at 38 weeks weighing 6lb 12oz.

I was 20 when I had my second baby, my daughter Lexxi.  My pregnancy was completely different from my first one. I didn’t feel pregnant. People told me I didn’t look pregnant, I was really small.  When I was about 6 and a half months pregnant a family member told me I looked like I had slept heavy, little did I know it was me starting to swell up. After weeks of constantly swelling I went doctors and was rushed to the hospital as my blood pressure was too high. I had pre eclampsia, something I’d never heard of. My daughter was born at 33 weeks weighing 3lb 1oz. She had to be tube fed for roughly a month and she came home before her due date. She’s now 5 with no complications.

In 2016 I had my son Kody at 27 plus one, again due to me suffering with severe pre eclampsia. Kody had a slight bleed on his brain but within a few weeks it corrected itself. Kody had extremely severe chronic lung disease and was put on various breathing supports, Kody also suffered with numerous infections as his lungs were too weak to cope with anything, even routine immunisations.

Kody made it to the high dependency unit a few times but always ended up back in intensive care, we were told numerous times that Kody might not make it.

Kody went to great ormond street hospital to see if there was an underlying problem but there wasn’t. He ended up going to a lung and heart specialist hospital in Chelsea.
As Kodys lungs were so bad they started putting pressure on his heart causing him to suffer with pulmonary hypertension. Kody was ventilator dependent so he had a tracheostomy to see if he could eventually come home on a portable ventilator. Kody was heavily sedated and muscle relaxed on many occasions. Kodys lungs were getting worse, he was on the highest pressure that the ventilator could give and his body still wasn’t receiving enough oxygen.

My beautiful baby lived until he was 7 months and one day. I’m now trying to raise awareness in Kodys name for these conditions. I have an Instagram account – @awarenessforkody.
Facebook/AwarenessForKody
I’m doing ‘Kodys story’ a little journey book for the hospitals and hospice we stayed in.
I have ribbons & hair accessories which if people donate money towards I’m giving it to either the hospitals or one of the causes close to my heart.  I also have many other projects I’m going to do to hopefully raise awareness.

Thank you – Brooke xxxxx
My baby Kody ❤️

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Everyday Autism series – Guest Blog

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The Everyday Autism series sprang from a request from Madi’s Kinder teacher who asked if there was anything she could do, or anything she needed to know to help Madi succeed and enjoy herself at Kinder, and to help the other kids understand her better after comments such as ‘Madi is dumb’ and ‘Madi doesn’t know anything’. The response to the simple, heartfelt story in which I tried to describe what was going on inside Madi’s head was amazing, and led to other books in the series.

The Series looks at life through the eyes of Madi, a child with autism and explores how she responds to the world, and the challenges she faces dealing with the twin issues of a heightened sensory response to external stimuli and difficulties in communicating her experience to those around her.  The books are written for children to enjoy and learn from, but they are so profound that adults will come away from them with new insights as well. They were originally written to express what I (Madi’s mother) learned about what was going on inside Madi, and to help Madi’s teachers, classmates, and others understand and respond to Madi.  Teachers, parents, and Madi’s classmates found them very helpful, and so I revised them, changed the illustrations, and presented them to the wider world in the hope that they will raise awareness and understanding of the growing reality of autism.

I’d like to think they will help other parents of autistic children to understand their children better and encourage them to see what is possible, and I’d like to think that the wider community might become less fearful of autism and more skilled in relating to people on the autism spectrum and able to appreciate their gifts of concentration and intense experience.

The books are available on my website www.theeverydayautismseries.com.au  $12.95 per book or Set of 4 $39.90 (Plus postage and handling) or contact Monique Cain at media3mt@outlook.com

 

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Monique

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