Note: this post has video in it. If you’re viewing in your inbox, click here. Grace got her feeding tube 5 years ago yesterday. It was the best decision ever. Not only can we get medications into her without fighting, we can keep her hydrated and fed when she isn’t feeling well. And of course,...
It’s estimated that 50% of girls and women with Rett syndrome can walk. This leaves the other 50% using wheelchairs and other mobility aids like hoists, standing frames and sitting solutions. People generally take walking for granted. There are so many functions in our bodies that are aided by our ability to be upright. Scoliosis...
I got a tip from a friend about this toy from ELC. Special needs toys can be crazy expensive so it’s cool when you find a toy that’s mainstream and good for your child with difficulties. This one is a steal at only £12. It’s called the Magical Music Disc. Even with very limited hand...
Grace tested a Tobii eye tracking computer today which was so amazing. I was emotional before she even began. The computer precisely tracks each eye independently. The cursor moves with the eyes and when Grace dwelled on the item she was looking at for a certain number of seconds, it acted as a click on...
Two days ago, Grace got her DM Orthotics lycra bodysuit delivered. She needs to wear it under her clothes 12 hours a day, every day. It’s extremely specialised with support panels and zippers and holes in all the right places. The purpose of the suit is to give her muscles the extra support they need...
Grace has been so so sick this weekend. I must admit sometimes when the boys are down and out, it’s nice to have a calm day cuddling with them, but this is the first time that Grace has been well and truly S.I.C.K and it’s been hard. She just ate for the first time in...
