Well where do i start? have not been on for ages so caught up in trying to get my daughter the right care she needs last Wednesday we travelled to GOSH the journey took three and a half hours to get there, Sue was very understanding and after going through the family history once again and a examination we were offered rehab treatment.
Tashi needs to put on 3kg in weight have local physiotherapist in place and a physiologist place before the rehab is booked, the EDS in tashi bowel needs treating as the the chronic constipation that is caused but the EDS which in turn should improve her appetite.
I have spent most of the day making and waiting for phone calls, to speed things up locally
Tsahi was asked how she feels about what needs to be achieved and how Rehab will work in tashi's words "very scared " and then burst into tears, sue was very understanding and reassured tashi that it will be hard work but she will have the right support every step of the way both from GOSH and locally,Tashi is not scared of putting the hard work in for rehab,Just very scared that it will make her worse Sue than said that Tashi could honestly not get any ill-er than she is and that doing rehab will start making her feel stronger and in the long term will hope t give tashi back some normality in her life ,
Tashi is nearly 16 so there is a seance of urgency to get care put into place and weight on. Keeping your child positive when they are scared, feeling very insecure not knowing what the future holds will she ever walk again she has so much to deal with and so many questions that i dont know the answers to.
all i want is for my daughter to feel well to be independent and to have friends , sorry for the rant,
hope you are all as well as you can be
love and blessings xx karen

Oh hunni sounds like you've got a lot on your plate at the minute! that's an awfull lot to take in for you, let alone tashi at just 16 BUT hopefully things will all work out for you guys. I suppose its worrying that you might pin your hopes on it and it won't work...but GOSH sound pretty confident and supportive so hopefully they can get everything in place for you both to make it a smoother experience.

Goodluck n hang in there
Xxxx