Wednesday 3rd Nov 2010

Hi everyone,



Thank you for your prayers for this afternoon's appointment with our 2 Specialist Consultants (1-Rheumatology and 2-Neurology) at RHSC. At the moment they are not prepared to reduce Rebekah's steroids further till they repeat an EEG scan. They are hoping this can be done within the next 2 weeks as an ambulatory scan as opposed to being an in-patient. This not only is quicker to get an appointment but also it allows Rebekah to come home with it. Therefore it will be a further 3/4 weeks before we get any results at the earliest.



It is hard to take in that Rebekah has been on this lot of steroids for a year now. Having hoped that by now she would be on the dose the Cons's are happy for her to be on (5mg), it is now looking for sure that she will be on them for a further year at least! Remember they were hoping away back last year to get her down to 5mg Prednisolone and keep her on that dose for 1 year! It is just another reminder that Rebekah's illness is here for the long term and we need to learn how to cope with increasing demands and how that impacts us as a family unit.



She really is an incredible girl though. It was hard for Jonathan & I to watch her today as the Phlebotomist took a "huge" syringe of blood from her to fill all the little containers the Cons's requested! She jumped up on the couch and lay back, stuck her arm out and waited for the Nurse to start! The student watching was amazed. At one point even Rebekah was saying to the Nurse to hurry up as she was bored with it all!!!



With regards to all the behavioural issues and sleep depravation/disturbance issue we are going to be referred to the Epilepsy Scotland and Sleep Scotland groups for help.

Tomorrow am we have a meeting with the Educational Psychologist at the School. We are grateful to the Head/Deputy Head Teachers and all the staff at Williamston Primary for their care of Rebekah. This input has been requested by our neurology Cons at RHSC. We would value prayers for this meeting as ever.

We continue to lay ourselves before our Lord for patience, support, comfort and the knowledge that we are in his hands.



Two verses that have supported us a lot as a couple/family/and individual's are Jer 29:11 and Isaiah 40:31.



Thank you to you all for your continued interest, prayer, support and friendship in our journey.