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, a limited life. We have never been given a life expectancy with Ethan but w

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 wipes for the changes. We can't buy these in the shops so these are very importa

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. Ethan had a week of seizures where he needed me throughout the night to get up hou

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 to change. The stars was the obvious choice for Ethan. For Christmas we asked

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 greatful for what we have and still joke about the struggles we had in the old

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 faces all around. We were lucky that make a wish jumped at the chance to give Ethan this

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 days old and even still we didn't know what the future would bring for Ethan. B

Do you ever struggle for ideas for what to buy your child with special needs? I always get excited about it, so I have compiled a list of ideas of things to buy children with special needs. My son is unable to explore on his own so giving him experiences that are accessible and fun for him is so important to me. Our children learn through play and using their senses, if one sense is lacking it doesn't mean the other senses can't be encouraged. Animals We have an extensive ran