Hi folks! Thought it was time to update Rebekah's blog!  Healthcheck:

Tomorrow is Wednesday 1st October 2014 and Rebekah & I are heading south for the appointment at Sick Kids in Edinburgh where we will meet up with Jonathan and head in together.  Over the past number of months we have been reducing Rebekah;s further so much so that in the mornings now she only takes 1 x 25mg Azathioprine tablet and in the evenings she takes 1 x 25mg Azathioprine tablet and 1ml of Clobazam!  Yes you are reading right she is ALMOST off her epilepsy drug!  We have been weaning her off the anti-epileptic drug for a while now (ie.reducing it by 0.5ml/per week in the mornings first and then the same again in the evenings).  It has been a long haul but we are very hopeful and praying very hard that she will be able to sustain this change and that she won't have any adverse reactions or regress in any way.  Our meeting tomorrow is for a joint clinic again with our Neurologist Cons and Rheumatology Cons at 1pm.  We would value your prayers as we go to this meeting. Rebekah has had (before the summer holidays) another Ambulatory EEG scan which showed no epileptic activity.  

The big ? for us is how her ACE levels are doing.  We are hoping they will repeat her bloods again while we are down. 

However, as we have said before this test can take a good few weeks for the results to come back.  And as many of you will remember from previous blogs this blood test has effectively determined the course of medication the Consultants give Rebekah!!  We would be lying if we said we are not worried about these appointments.  Of course we are!  But we are just so thankful that Rebekah has come this far and is doing so much better than she did when she first took unwell.

School/House Move:

At the beginning of August this year (2014) we moved to Knockfarrel!  Rebekah is now in P6 at Ben Wyvis Primary School and is beginning to settle in.  David & Rebekah travel down to the school in a minibus which collects them both from the front door of the croft!  Both of them are enjoying this new mode of transport.  Their bus driver, John, is very cheery and enjoys a bit of banter.  It turns out he used to be an ambulance driver for Raigmore so was frequently Granny's driver! Small world!  Rebekah was successful in audtioning for the main part for her P6 show which will happen at the end of the academic year.  She was thrilled when she came home and told us all.  

Our God is a Great Big God:

This next bit of news is amazing!  When Rebekah first became unwell and then was diagnosed with a rare form of epilepsy and ?neurosarcoidosis a few people had told us we should really try and meet up with the "Mathesons".  Why? because they were experiencing similar problems and issues with one of their daughters (Sarah).   It would be good for us we were told to share our stories with each other as many of the issues we were facing they were facing too!  Often in these circumstances we feel we are the only one's living through this.  Well:  Abigail, Rebekah's older sister, started Dingwall Academy in August there and has settled in really well.  One night she was texting a friend called ElMarie and during their conversation ElMarie's father said he knew where Abigail lived and that we live next to one of his colleagues from Blyswood.  Abigail started sharing this info with Jonathan and one thing led to another and Jonathan discovered that his name was Iain Matheson.  Then the penny dropped!!!  Then to crown it all the following Sunday we went to Ferintosh Free Church and met the Mathesons!  I have had several conversations with Rona & Iain even Abigail has had a sleepover over at their's.  It is incredible how God works.  He certainly does go before us.  

Please do pray that tomorrow will be a good consultation and that we can get some more answers.  Pray for safe travel for Rebekah and I as we travel down the A9.  Thanks again for taking the time to read Rebekah's blog.  

Jonathan & Jillian