First of all, Jillian and I want to express our sincere thanks to all who have travelled on this journey with us over the past eight years of our lives.  The many thousands of prayers that have gone up for Rebekah have been answered in an incredible way.

Back in 2009 Jillian and I were told the double diagnosis of Neuro Sarcoidosis and Epilepsy Aphasia and since then Rebekah has received treatment from three consultants based out of the Sick Kids Hospital in Edinburgh.  Just over a year ago Rebekah was weaned off the last of her medication and tests were carried out which were repeated earlier this year.  The upshot of the test is that when we met with the Consultant in the Summer she informed us that she didn't quite know how to tell us the news but was delighted to do so.  She said your daughter has been healed.  To which Jillian responded by saying what do you mean by the word "Healed"?  The response came... "well as Consultants, before we met with you today we trawled back over Rebekah's test results and scan of which we have legion.  We can prove your daughters illness and all we as consultants have done is provide medication which we hoped would stabilise your daughter situation and allow her to develop and grow.  We always believed this would be the case with her until we no longer could work with her and expected to hand her over to the adult team.   Today we are telling you your daughter has been healed as medically based on the test results we have this is absolutely an impossible outcome"...  Jillian's immediate response was, "well we can explain it, many thousands of folk have prayed for our daughter to be healed and that is precisely what God has allowed us to see happen".

Many of you may be wishing we had shared this story much earlier and we can understand that.  For Jillian and I this has been a massive rollercoaster and one where we have wanted to be absolutely sure that the outcome we have been given was being born out in our child's life.  Praise God we have seen incredible milestones being achieved by Rebekah this past year.  The learning curve she is on has been huge but she is coping with it remarkably well.  She is learning to play the Fiddle and Piano and is managing both.  She is pretty much able to do everything that any other child her age can do.  Eighteen months ago she was suffering from stunted growth but now she has completely caught up on where she should be.

As we enter the Christmas season 2016 for the first time in eight years we can look forward to the year ahead, in the knowledge that, God willing, we will no longer have to make trips to Sick Kids.

The last two years has seen us move house up to the Highlands of Scotland to live on my Grandmothers croft which has been in our family for just short of 200 years.  This is an enormous privilege for us and one we are cherishing every day.  We love living in the country and being able to plan the next stage of getting sheep hopefully in the next few months on the croft.

Rebekah has just received her first report from Secondary 1.  We are very pleased with her progress and apart from 2 areas appears to be coping very well which we give God enormous thanks and praise.

As we look back over the last number of years we see God's hand woven throughout.  We have had so many verses of scripture given over many years.  However, God has been faithful and despite our struggles he has brought us to a new place.  In addition, not only have we had the joy of seeing our daughter healed we have had the joy of seeing her trust the Lord over the summer holidays.

Thank you for your continued prayers and for all the support you have been to us all over so many years.  

 

 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

Update 17 August

Today saw the first of a few appointments we believe with the Neuro Psychologist.  This was a very helpful day today as she immediately picked up on a lot of what was going on with Rebekah including spotting the things that we usually spot ourselves and most folk never realise has actually happened.  Over the next few weeks Rebekah will have two hour appointments with her while she tests her working memory functions.  As  has always been the case Rebekah's long term memory is good but a lot of the time her short term memory is  awful and at times it is not dissimilar symptoms to Alzheimer's.  As she enters Primary 4 next week it is important that she is given the best possible chance of achieving and maintaining her learning and therefore the work that is done here will hopefully result in the right support being provided for her going forward.

We want to thank you all for your prayers, to say this has been a tough few years now is a bit of an understatement with all the ups and downs and we give thanks that believe in a God who loves us and cares for us and supports us through these days.  We often think of the words found in Isaiah 40 v 31. They that wait upon the Lord will renew their strength and will mount on wings like eagles, they shall walk and not faint.  We have been trying to do this as we are weary and we know that God will carry us through in the days and weeks that lie ahead.

Rebekah as she reaches the age of 8!

This is an overdue update of Rebekah.  As I am writing this we are waiting to go to RHSC (Sick Kids In Edinburgh) for an appointment with a Neuropsychologist.  This is as a result of a request by our Neurologist Consultant who is eager to test Rebekah further now, age appropriately.  What that actually means we don't know but on our return we will update you further.  Please do pray for us as today as there are so many questions we have and are not sure we will get many, if any, answers.  We have enjoyed over the summer months time up at the croft in Knockfarrel, a week in Duchally (Auchterarder), an Extreme Stunt Show, Blair Drummond Safari Park, several visits to Landmark Adventure Park in Aviemore and many more day trips.  Must go just now and drop the other 2 kids off at their Grandparents.  Will update later. Thanks again for your continued support and prayers for Rebekah and us as a family.

January 2012

Happy New Year to all our followers. Sorry it has taken soo long to update Rebekah's blog. The latest news on Rebekah is not good. The last EEG scan showed some epileptic activity but not as much as earlier scans. However, the blood tests carried out in Nov/Dec time have shown a deterioration which in effect put us back to when Rebekah first took unwell in Feb 2009. So much so that one of our Cons's in Sick Kids phoned us last week, whilst we were up in Dingwall, to instruct us to put Rebekah back on a course of steroids - 10mg/day for 2 weeks then 5mg/day thereafter indefinetly. Also as she has been on steroids for over 2 years now they have had to put her on a stomach tablet to prevent her from getting stomach ulcers etc. This is again a worrying time for us as a family. There is so much uncertainty surrounding Rebekah. For us, we have not been getting our hopes up as you will remember our hopes were dashed the last time she came off the steroids. However, we remain hopeful and continue to pray for our daughter that she will be healed. We have already seen how God can use Rebekah to help other children in Ward 7 at Sick Kids and believe that good will come out of all of this. Rebekah is keen this year to raise money for Ward 7 (Neurological Ward). This might involve cycling, car boot sale etc so we will try and keep you updated as to when, what and where! As many of you will know steroids have a lot of side effects. They can disrupt sleep patterns/behaviour/diet/social interactions to name a few. All of which have an impact on our other children Abigail (8) and David (5) and ourselves. We do have an appointment to see our Cons's again in a couple of months time. Thank you for taking the time to read this and we do appreciate all your support.

Jonathan & Jillian

Sunday 20th November

Just a quick further update. The scan a week past Friday was inconclusive so Rebekah is to have a further set of 24 hour scans on Tuesday over to Wednesday this coming week.

Please keep on praying for her.

Thanks

Jonathan

Update 10 November 2011

Dear All,

Thank you for your continued prayers for Rebekah. It has been some time since we updated the blog and felt it was time to bring you up to date. A number of folks have been asking us for an update on her current situation.

Since we last wrote we indicated that the consultants at Sick Kids had decided to in their words take the sticky plaster away and see what happens. It has taken us till now to come down off the steroids. This has been a very trying time for us as we have gone through behavioural swings like you would not believe unless you have experienced them. During this period of steroid reduction we have started to notice small signs of symptoms returning with Rebekah. To the extent that during the last couple of weeks there has been a number of instances where it has been evident that she has lost words from her vocabulary.

In addition to noticing issues with her language we have had a meeting with the school who have shared with us their concerns regarding her current education needs and the fact that some days she does exceptionally well and then other the work bears no resemblance to the work being done. We also had a report from the Educational Psychologist who has also confirmed issues going on.

Given all of the above we decided the time had come to speak further to the consultant about the issues. Having done this yesterday we were taken a back today to receive a call from the hospital to inform us that Rebekah will have an emergency scan on Friday morning this week. We are to keep her up till midnight on Thursday and then wake her up at 5am and keep her up until she gets to the hospital. The hope is that they will get her with sleep deprivation and hopefully capture what is going on.

We would appreciate your prayers for her this week and continuing to go forward. Jillian and I have tried over these past months not to get our hopes up with Rebekah coming off the medication until we knew that the result was going to positive. So far though we are not convinced and would just ask that you continue to uphold us all in your prayers at this time.

Every blessing

Jonathan