SO many people have said over the last few weeks that fighting for basic care for your sick child is a fight you shouldn’t have to do. But the more we walk this path the more we realise how little the medical sector know and will do for Trisomy 18 babies. Their research is often outdated, their experience with it minimal. Take for example the specialist we saw today, in… View Post

As we left Cornwall last week Naths Mum handed me a bag with this beautiful hand stitched blanket. I LOVE IT!!!! If you wonder why the crazy colours? its what I chose 🙂 (I know I have taste haha) I love bright colours and from finding out we were expecting I mentioned how i’d love an orange and turquoise blanket for the baby I absolutely love it, its so cool… View Post

I don’t know whether it’s his age or what but recently Ethan just NEVER seems to be content with things and its driving me NUTS! Get him his red tshirt out, he wanted to wear the blue one. Get him a chocolate ice cream and he wanted strawberry. He wants the car that someone else has or the book that Megan is reading, he didn’t want to go in our… View Post

Last week the hospital referred us to “Forget me not” children’s Hospice and tonight we reluctantly (all) went for a visit. Ethan and Megan chose their own outfits and graced them with their presence – Megs rocking a witches dress and crocs, Ethan – shorts, tshirt and wellies  We were pleasantly surprised and found it a very peaceful place. Everyone we met there were so nice, friendly and welcoming and… View Post