Yesterday we had a vistor from a lady from the visual impairment team. Funnily enough, our paths had crossed before; I supported a lad in my job as a special needs teaching assistant who was visually impaired (among other dificulties), and this lady advises us (as a school) how we can best meet his needs. I also went on a course ran by this lady a couple of years ago.
Anyway, she was really nice, and to me, most of the stuff she suggested was obvious; black and white, bright things, lights, different sounds, different materials etc. Then we all went under this HUGE piece of shiny tin foil/emergency blanket thing. She shined a torch in different places. I watched as Hope's attention was drawn towards these reflections of light on the shiny thing. BINGO!
So the kind lady left it for us. And we've been hanging out, shining lights for Hope under the shiny thing. It gets sooooooo hot under there after a few minutes, but Jordan-Amy likes going under there with H too. H throughly loves the experience. She likes the lights and the sound of the material.
Sadly our Borders book shop is closing down :O( On the plus side, I bagged some great bargains!
Sadly our Borders book shop is closing down :O( On the plus side, I bagged some great bargains!
My biggest bargain being 'Rainbow in my room' which was £29.99 down to £1. Now, I really don't think it's worth the original price, but for a quid, well, it's fantastic. It is what it says on the box..just a piece of plastic that projects a beautiful rainbow. It looks really pretty on the ceiling, but this is no good for Hope cause I know she can't see it there. So we project it onto her bumper on the side of her cot, or even better, go under the shiny thing with it!
Yesterday was seizure free again. And today (touch wood) she's only had 2 spasms. She's still on 4.5mg of vigabatrin twice daily, so I'm pleased I haven't had to up the dose yet.
She's loving her food! Still on the boring ol' baby rice but she just eats it right up. Today she had 3 portions (3tsps baby rice+30 tsps milk). She would have eaten more too, but I want to increase gradually the amount she has otherwise she may just get really full and then sick it all up. Tomorrow, I'm going to make her some sweet potato.
must go, Hope is calling. She's being a very demanding princess today
Thanks for reading
Xxx
Hi I found this blog as I was searching Rainbow makers and epilepsy. It is lovely to see your daughter enjoying the rainbow maker, my sisters also visually impaired so it's good to see that Hope is following the lights as I hope Natasha will.
ReplyDeleteTheir conditions seem quite similar (although Tasha is 23 now).
So I just wanted to send my love and hope you and your family have a wonderful Christmas.