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A year since our lives changed


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 house. (Now it's funny but back then it really wasn't!!). Every time I take Ethan through a door way or out to the bus I am reminded of how hard that simple task would have been in the flat. We had some great times in that flat and made lots of memories but in the end time dragged there. We constantly struggled with Ethans care and being all on top of each other. I grew accustomed to it but Steve never got used to it. I have been able to create environments for Ethan to use every room and be able to be a real part of family life. We are currently this weekend giving his room a make over. His room will become completely self sufficient for us and carers to use. It will mean for those poorly days or unsettled nights everything can be achieved in the bedroom rather than moving him from room to room! When it was just Ethan and I, for all those years, for ease he would be in with me when he had seizures or was poorly. I could easily pick him up but now I just can't do it anymore. I love nothing more than to snuggle my baby in bed but his bed is just not big enough for that! When we planned Ethans room I got lots of advice from parents in the same position. They all advised access to both sides of the bed. This was able to happen here and really is helpful when we're stood one side and paramedics are stood the otherside giving us all access to Ethan. I've spent many times away from the bed having to watch the paramedics sort Ethan without being able to comfort him myself. Now I can do this and it makes those experiences so much easier to deal with. I always wanted a space for Ethan to do his physio in his room. Having had this now and not using it as much as we should, I am going back to no physio mat in the room and will continue to do this in the lounge. Ethan will now have a day bed in it's place. This will allow for us and carers to sit with Ethan in comfort when he's not settled. It will also pull into a double bed for me to use when Ethan just won't settle or he needs more obs in the night saving me waking and disturbing everyone through the night. I can't easily transport Ethan when he's asleep without putting him into chairs so being in one room with full hoists will really help. The main thing our new home gave us was the ability to be a normal family. Ethans equipment was always everywhere through the house but now he has storage space of his own in his wet room so it means we aren't constantly reminded of all the help he needs instead we can just enjoy him. We never had space for a dining table and here we do. This allows us to sit as a family and interact together. It also means we can have visitors and family over to enjoy that time with us too. A year on and Ethan is still getting used to the shower! When his daddy or daddy Steve are on bedtime he gets a bath as they can still lift but I need the hoists for showering. Ethan really loves a bath so we may look at this as another project for the future but for now it's not majorly important. We will continue to be blessed by this house and will share more of our environment as we decorate this year! We are all in full meeting mode ready for our new arrival so lots will being prepared for the whole family.

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