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The bus – Jennifer's story
https://ryanakajoey.com/2014/06/11/the-bus
Arteriovenous malformation, hydrocephalus, cerebral palsy, blind, epilepsy and a great big heart! June 11, 2014. Mercedes Benz Vito 113 CDI extra long. Turning circle 12.5m in diameter. 5 seats, with the option to remove one when the wheelchair comes. This is a bus, not a car! It’s probably the most important piece of equipment we will have. It’s not our car, it actually belongs to social security. We have to insure it, we have to maintain it, but we also have to deliver it back in 12 years. But then aga...
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The operations – Jennifer's story
https://ryanakajoey.com/2014/04/03/the-operations
Arteriovenous malformation, hydrocephalus, cerebral palsy, blind, epilepsy and a great big heart! April 3, 2014. Ever since Jennifer was 6 months old we wondered if she would need a G-tube. That time has finally come, or more correctly, that time is overdue. Jennifer followed her weight curve right up until she was about 16 months old. It then flattened out completely. I think she weighed around 7,5kgs, she was never fat and she was always eating just enough. She weighs 8,5 kilos. But like everything els...
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The trip – Jennifer's story
https://ryanakajoey.com/2014/07/29/the-trip
Arteriovenous malformation, hydrocephalus, cerebral palsy, blind, epilepsy and a great big heart! July 29, 2014. If you’d have asked me 3 years ago to travel from one side of the planet to the other with a child that can’t see, that can’t talk, that can’t walk and needs feeding through a tube I would have laughed, told you that that is impossible, and thrown a few choice profanities your way too! How big is the plane (A 380) Emma? How naïve we were to think that having a healthy child was difficult!
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The extension, part 1 – Jennifer's story
https://ryanakajoey.com/2014/05/12/the-extension-part-1
Arteriovenous malformation, hydrocephalus, cerebral palsy, blind, epilepsy and a great big heart! The extension, part 1. May 12, 2014. Our house before the extension. In the never-ending line of things to fix, the house gets its turn. Universal living, or design for everyone. We’ve had these drawings more or less ready since November. But as our house is in the middle of an area which will become a new estate very soon, we’ve had a few delays along the way. This should be fun! No, it’s because univ...
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The hip operation – Jennifer's story
https://ryanakajoey.com/2015/04/12/the-hip-operation
Arteriovenous malformation, hydrocephalus, cerebral palsy, blind, epilepsy and a great big heart! April 12, 2015. April 12, 2015. Jennifer’s fifth operation, her longest and undoubtedly her most painful…. She was first due to have the operation around February but woke the morning before with a fever. We stayed overnight at the hospital anyway but the surgeons cancelled it in the morning. No risks. She was booked in a month later. It’s the hardest of tasks, I envy Jennifer in that sense…. They usually dr...
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The question – Jennifer's story
https://ryanakajoey.com/2014/09/03/the-question
Arteriovenous malformation, hydrocephalus, cerebral palsy, blind, epilepsy and a great big heart! September 3, 2014. October 7, 2014. I usually don’t deliberate over my posts, I generally just write them and post them without too much editing. They’re generally just a mix of thoughts and feelings I need to get out of my head. This one’s a bit different, as I’ve had this written for a few months but wondered if it was right thing to do by posting it. Hasn’t a doctor been wrong before? Maybe that’s w...
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The medical thing – Jennifer's story
https://ryanakajoey.com/2013/10/25/the-medical-thing
Arteriovenous malformation, hydrocephalus, cerebral palsy, blind, epilepsy and a great big heart! October 25, 2013. It’s probably been too long since I’ve informed anyone about Jennifer’s actual medical condition, it doesn’t really make for pleasent reading but here it goes anyway;. Despite our best efforts, depsite Jennifer’s better eating habbits, depsite the slight improvement in her oral motor skills she will have a feeding tube placed in her stomach. She lacks muscle mass, and muscle weighs more tha...
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The third year – Jennifer's story
https://ryanakajoey.com/2014/11/22/the-third-year
Arteriovenous malformation, hydrocephalus, cerebral palsy, blind, epilepsy and a great big heart! November 22, 2014. December 6, 2014. Where exactly has this year gone? Feels like yesterday we were getting ready for Jennifer’s operations, or getting ready to take the kids back home to Perth…. If I could sum up this year in one word it’d be progress. Socially, cognitively, some what motorical, her language and last but not least her weight gain. Jennifer will never be fat, get used to it. That feeling of ...
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The only child – Jennifer's story
https://ryanakajoey.com/2015/01/28/the-only-child
Arteriovenous malformation, hydrocephalus, cerebral palsy, blind, epilepsy and a great big heart! January 28, 2015. January 28, 2015. We may have to two children but I sometimes refer to Emma as an only child. Sometimes that gets me in trouble, sometimes I get ignored and sometimes I get an utter look of disgust…. Just because I refer to my child in any such way, doesn’t mean I love or respect them any less. An independence untoward, you’ll read this one day Emma, you’ll know what I mean. The thing about...
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The system – Jennifer's story
https://ryanakajoey.com/2015/02/06/the-system
Arteriovenous malformation, hydrocephalus, cerebral palsy, blind, epilepsy and a great big heart! February 6, 2015. March 4, 2015. This could be a long one…. The system as we know was originally designed to bring disabled children out of institutions and back into homes with their families, where they belong. Why take children with the an extreme level of care out of qualified “homes” and bring them back to their families? We’re lucky to be living in a first world country that exercises these rights.
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