The most awful part of rett syndrome is losing your child you had and starting all over with the new one. The one who will always need your care. Who may never toilet train or feed themselves. Never mind go to uni or get married. Its a huge process to go through. The whole time you must be brought back down with a bump because your child needs you so much you dont have any time to let your mind wander into all these awful thoughts. You look back on your childs baby photos when you were clueless to it all and it hurts.

Well the tobii arrived and we had great fun setting it up at School. See that is going to take a bit of practise but it looked simple enough. I am so excited that we are fund rasing for Shona and i cant wait to get her very own Tobii and C eye gaze. I think if she can use it as confidently as she does in school, how great will it be at home. Everyone has commented on how easily her eyes adjust to it. So she can get on and play. Choosing dolly and Teddy. Looking at lots of animals and making her way to pages she would like to look at. We have been doing lots of work at home in our new books which have lots of colourful pictures and words. We are learning that all pictures have a word. She is also enjoying her rhyming and word cards. All this is in preparation to teach her to read and spell. So she can eventually talk with her tobii machine. Its almost the most amazing possibilty ever... apart from a cure for Rett syndrome. OBVIOUSLY.. we are still doing as much as we can to raise money after having a quiet time at christmas. Adele is bungee jumping in Glasgow for sponsorship, we have a golf day on June 15th at williamwood. This is being very kindly arranged by the members. We are organising a ballet dancers and action heroes party and disco for the youngsters. Dates to be confirmed. We are also hoping to have two nights in East kilbride. A race night and a band night. Also a collection in East kilbride town centre, sweets, balloons and wrist bands. So ill be having a breakdown !!! HAHA... anything for my little Sho.. xxx This is a picture of the tobii, I also really need some requests for funding Scotland. Anything communication wise that you can think you can try, give me a email and lets see if we can help you out.

Fantastic after we had a short but successful trial of the Tobii at naidex conference in Glasgow. We got another go this time at home. Shona was super excited and showed she could look and activate the tobii with ease. She really enjoyed picking actions for us. drive a car and pat your tummy were her favourites. It allowed me to really see what potential this device could give Shona. I have high hopes that my little girl will one day be able to speak to me through her device !  She can choose and have a direct involvement in her environment.

Shona is off to nursery in her local authority placement, we have her here Monday and Tuesday.The hours are nine to three and she is picked up and dropped off by the bus service that they provide which saves carting wheelchairs around and she seems to really enjoy talking about going to nursery on the bus. She appears very aware of the children and their names when you talk about them. The feedback from the nursery is good to an extent. they have a little diary they send home but sometimes they just give you the basics Ate sleep ect.

Well hello and welcome to my blog, Shona has had her lunch and is in her Jenx prone stander watching Barney at the farm this is a Shona favourite ! She communicates this message well. Shona has been having a few sezuires over the last few weeks some of which are becoming more violent, thrashing around with her legs and a very hazy expression on her face. luckily so far she is coming around quickly with little aftermath. We have to be very careful she is not swallowing when this happens. Shona has a fairly mashed or pureed diet, she cant really chew and her drinks are thickened.