Two days ago, Grace got her 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 to sit up straight. Also, because we reckon she has a hard time judging where her body is in space (imagine feeling like a floating head), the tightness of the suit gives her brain neurological feedback to tell her where her body is. She will have to burn less energy doing simple things like supporting her own body so we anticipate she will have more energy and be less sleepy.
She loves her suit! She smiles massively when I pick her up after squeezing her into it and she sits so strong and tall without the massive effort she used to have to put into sitting.