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Our Blog

Journey with us as we battle living with ARX, a rare genetic Disorder.

May 3, 2019

This is only a small part of my story. Obviously a lot more has happened in 9 years. I've never shared anything like this before. I'm scared but I know I'm not alone. Being a mum is a hard but rewarding job. Having children has changed me. I will never be the same again and I'm ok with that. Our journey will never be easy but it's one I'm glad I share with some incredible people. So here it is, a...

June 7, 2018

Ever seen one of these before???

No?? Then you are incredibly lucky. This is the plan for what we want to happen for Ethans end of life care and for medical treatments throughout his life.
We hope that we never have to use it but it's important to have it all written and recorded incase the time comes that we do need to use it.

Unfortunately children with life limiting disorders, means just that...

March 7, 2018

1. Medicines

This is the most important thing to remember when we go away. Anything else we can mostly replace or get by without, but this we can't go without. Ethan takes 4 main medicines twice a day, then we take other medicines in case. We take rescue medicines as well. We also take spare ends for his PEG incase they snap. 

2. Pads

Ethan is doubly incontinent so we need to take pads with us and wi...

February 7, 2018

The last four weeks have been mentally, physically and emotionally draining. I've gathered a lot of bits for my book!
But in all seriousness it's been full on. We've had a lack of rest from Ethan which has resulted in one incredibly worn out mummy. Everyone says how well I look on no sleep. Well for the first time i'm sharing pictures of me exhausted just to show i don't always handle it well.


Eth...

January 16, 2018

We decorated Ethans room last weekend. His was the first room to be done in the house. We moved for this special man so it was only right his room got done first.

I wanted to make his room as calm and as functional as I could. He has a lot of equipment that he needs daily and so I didn't want to create a hospital environment.
We chose grey as it's a colour we can keep for a long time and not need...

January 6, 2018

We can't quite believe that we have been in this perfect home for a whole year. To this day I've still not found one problem to living here just bucket loads of positives! Everything is perfectly set up for Ethan and all his needs. 
There are definetly things we would like to add to enhance the bungalow but that's just to make things even easier! 

Time has flown by here. Every single day we are g...

December 7, 2017

  

Last year we started planning for Ethans wish. Life is so unpredictable for Ethan so we wanted to create memories that we could treasure forever. We thought about all the things Ethan loved and with the help of his sister Dakota we decided a trip to see father Christmas at winter wonderland would be the perfect wish for Ethan. Ethan loves Christmas all the lights and music and the happy fac...

November 28, 2017

When I was younger I was a brownie and then a girl guide. Our motto was always "be prepared". Now this is something I've carried on through my life. 
I try to be organised and ready for events and experiences way earlier than I need to.

The biggest thing I wasn't prepared for though, was becoming a mummy to a child with special needs. We didn't know anything was wrong with Ethan until he was 4 da...

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Featured Posts

November 24, 2013

So the title of my blog pretty much sums up my weekend! This week I hurt my back lifting some of Ethan's equipment into my car. We...

January 20, 2013

So this is my first blog. I've been reading a blog written by someone I know and I've been really enjoying it. I've been consideri...

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