Well I think I am about recovered from our trip on Wednesday lol. We were really lucky that a lovely lady at the table next to ours on the train overheard us talking about going to GOSH and she was going to a hospital around the corner so she took us on the tube and showed us where to go.
Unfortunately we were rushed as they needed the room for the next clinic so i didn't get to give all my explanations as to how bad she is or ask all the questions I wanted and left there a bit deflated really
Don't get me wrong, Sue was there and she was fantastic but the dr although very lovely seemed to know little more than the rhuemy we saw in Cardiff. When I mentioned that in our appt the dr had said it was HEDS but then the diagnosis letter said HMS he said that they don't call it HEDS now as they are the same thing, I thought it was the other way around?
Anyway, I would have been more than happy to have gone just to see Sue TBH and she gave Lili excerises to do for her legs which we have to build up to 30 a day before we go back in 6 weeks time just to see the physio and they will add weights into it. She kept saying that Lili had the potential to be a great gymnast or dancer and when she is stronger we should seriosly consider this route which really knocked me for six as she can't even walk to and from school everyday without being exhausted and in agony.
There was no mention of the two week physio programme and I'm curious as to how bad a child has to be to get on that? To me she is bad but i only have myself and her siblings to compare to, we can't walk for more than 15 mins without tears(with boots-was even worse without) and her arms and hands hurt almost constantly not helped with the fact that her shoulders have just started becoming a bother when she is combing her hair.
The logistics of me being there for 2 weeks, 3 other kids at home and hubby's work just don't seem to fit but if it means she doesn't cry all night just because we went shopping that day I would take her in a heartbeat.
Hopefully the next appt will allow me more time to explain my worries and ask more questions