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.

Tuesday 2nd November

Just a quick update today on Rebekah. We have a meeting tomorrow with Dr Ailsa McLelland (neuro cons) and Dr Davidson (connective tissue cons) at RHSC in Edinburgh at 2pm. Please pray for us all as we attend this appointment. Rebekah is now on 8mg Prednisolone as well as all the other medication she is on. She is also taking 50mg Azathioprine and 15ml of Clobazam every day. In fact she now has a competition with her Mum to see who can take their tablets the quickest! We are blessed by the fact that she is so good at taking them all. Good old Irn Bru comes in handy!! In some ways there has been an improvement in this last month with her reduced steroid intake but in other ways there has been no change. Her behaviour and mood swings have been quite horrendous and challenging for us as parents and her siblings. In fact if you read over the last blogs this has been a constant problem from the outset. In recent days there have been a few outbursts in a public setting which have been quite alarming in nature. This is due partly to meds but also can be attributed to her illness. She continues to be at school and is doing well. We have a meeting on Thursday am with an educational psychologist so please remember us for that.

Prayer Points:

Wed 3rd Nov Meeting with cons's at RHSC
Thurs 4th Nov Meeting with Educational Psychologist at School
Behavioural issues and Mood swings
For Abigail and David
For Mum and Dad

We will update you in the next few days as to outcome of these meetings.

Thank you for your continued prayers and support