A few weeks ago I went into the school to speak to the Special Needs Teacher about Lucy. I told her all about her condition, what it was and what it meant for Lucy. The teacher had not heard of Elhers Danlos Syndrome so she was happy that I took a long a print out about the condition.
I gave her a list of what I wanted for Lucy in school which wasn't too difficult. The main thing being I've stopped her from doing p.e. It's not that she's not capable of physical activity, it's just that I don't trust the school to make sure she's not doing something that may harm her. Also, the other kids in the school are pretty rowdy and I don't want her getting hurt by them.
I also told the teacher that she may get tired easily and finds it difficult to walk long distances. Also, that she may find sitting on the floor for long periods painful.
I'm allowing her to go outside at playtime so long as she's taken seriously if she gets hurt or falls. What is a simple bump to an ordinary child might be quite serious for her.
We will see how it all goes.
This week we have two hospital appointments. Finally we have an appointment with the rheumatologist so I'm busy writing down all the information that he will need and the questions I want to ask. You need to be prepared.
The second appointment is with the physio therapy department who will assess whether Lucy needs any physio and if it will be beneficial for her.
I'll let you know how we get on.
I've also asked for her to be referred back to the psychologist about her sleep issues as she is taking longer and longer to fall asleep at night. She's always woken a lot during the night, but generally she's fallen asleep quite quickly which balances it out a little. Now, she's really not getting enough sleep at all.