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

Here is a quick update just now on how Rebekah got on at Sick Kids, Edinburgh at her recent consultation:

Jonathan & I met with our Neurologist Consultant, Dr Ailsa Mclelland and one of the Rheumatology Consultants. Rebekah had all her blood tests repeated. We were then informed that they were wanting to take her off the steroids completely by the end of this year. This would involve us reducing her steroids by 1mg every month. She is currently now on 5mg, which is 1 tablet dissolved in some juice. She remains on the other drugs. However in a couple of weeks time she will need to start taking 4 x 1mg tablets of steroids on top of her other medication.

Effectively the Dr's said to us both that they want to "peel back the sticky plaster and see what is lying underneath..." They are unsure if Rebekah's condition will remain stable as it has been for a wee while now or whether her condition will deteriorate. As many of you will know steroids mask a lot and so we are quite wary/scared as we enter this period of uncertainty. We have been here at this point before and so are looking for guidance, strength and courage as we face these next few months. The last time Rebekah came off steroids her condition deteriorated rapidly.

On the one hand we feel "happy" that the Dr's feel they can reduce the medication but equally they don;t know how she will react.

So far we are now about 3 weeks down the line of this reduction and just this am, Saturday 11th June, 2011, Rebekah came through to my bedroom with a very high temp, sore head and legs. These symptoms haven't been around for some time now and so Jonathan & I have been quite concerned about her today. She has been out of sorts today so we will continue to monitor this.

We thank you all once again for your continued interest, prayers and support. Jonathan has now completed 1 week in Afghanistan and returns home next Saturday. I have also been at work this past week and will be back in at the Edinburgh Cancer Centre this coming week. Every year I have to complete a 4 week block to keep up my registration. It has been a great support for me to have our friend Fiona Culley staying with me and helping get the children out to school etc in the am's. Also our friend, Jane has been helping to watch the kids after school and pick David up from nursery as I don;t get home till 6pm.

We will keep you posted on Rebekah's progress as we start this next phase of her treatment. All being well we are due back at Sick Kids in Nov time for more test, brain scans etc and then we will see the Cons's again in Dec to discuss things further. However should things change then will see them sooner.

Thanks again.

Jonathan, Jillian, Abigail, Rebekah and David

xxxxx

Apologies for the delay in updating Rebekah's blog as of late. Our family life in the last few months has been nothing short of chaotic. To bring you up to date Rebekah last monday, 28th March, went into Sick Kids in Edinburgh (RHSC) for a 24 hr video telemetry EEG scan. This was requested by our Cons, whom we are to see in May, following a conversation the Cons had with us in the last couple of weeks as we had been informed by the School that she was losing concentration within the classroom and unable to retain information that was given to her in a short space of time. Also we had noticed symtoms creeping back in at home again which we were concerned about. Along with the EEG scan Rebekah provided the Dr's with numerous specimens of blood for all the different Blood tests that are required. Some of the tests take up to 6 weeks to get reported on hence the length of time to the next Consultation meeting in May.

It is worthwhile pointing out that at that meeting in May we will once again see all 3 Consultants that Rebekah is under at RHSC. Two Cons are Rheumatology and of course our Neurology Cons. All of them have to consult with each other before any of her medication is altered. Once again it highlights the complexity of Rebekah's condition's when you have this level of committment from the medical team.

Rebekah has yet again visited St John's hospital (our local) today following a bout of sickness throughout last night along with a fever. At the GP's at lunchtime the Dr there requested that we take her up to the Paed's Dept as her urine sample showed she was dehydrated and ? UTI (urine infection). Since she was last there 3 weeks ago for similar symptoms and ended up being put on IV fluids and antibiotics nobody was taking any chances this time round. However, the sample provided up there was inconclusive and the Dr;s were not prepared to start her on an antibiotic without establishing the point of source of infection. As a result she was sent home and we were told that if her symptoms changed over the next 24 hours then we were to go straight to the Childrens ward again, bypassing A&E and NHS24.

Rebekah;s current medication is as follows: in the mornings she takes her Clobazam (anti-convulsant), Azathioprine (immuno-suppressant) and Prednisolone (6mg) and in the evenings she takes Clobazam + Azathioprine. This is a mixture of tablets and liquid medication.

Prayer points:

1 That she continues to be really good at taking her medication.

2 For the Consulation meeting at RHSC in May.

3 For strength for her, her siblings Abigail and David, and her parents.

Rebekah, the past few times she has been in hospital either as an Out-patient or In-patient, has been quite emotional throughout the whole process. She is now more aware of the goings on and picks up more now when the Dr's are talking to us about her and her conditions. So she is very sensitive about anyone talking about her or to her.

We are currently seeing Epilepsy Scotland and Sleep Scotland. One of the biggest problems we have at the moment is that Rebekah finds it extremely hard to get to sleep at night. More often than not Jillian can still be trying to settle her at 10pm having started the process at 8.30pm. Please pray that:

4 She will fall asleep earlier.

5 For her Dad, who is currently very unwell with a perforated ear drum, ear infection and throat infection which as of tonight he is now on his 4/5 antibiotic and more painkillers. He has also been quite sick as well. Not sure if its the change of antibiotic or the "bug" that Rebekah has kindly passed on.

No doubt more could be written but do please continue to pray for Rebekah and uphold us as a family before the Throne of Grace. We keep trusting, praying and looking to Jesus for help, guidance, patience and strength.

x

February 2011 update

Dear All,

Apologies for the silence over the winter period. These past weeks have been very challenging indeed. It is hard to believe that two years come tomorrow Rebekah took ill and that we are still dealing with the fallout and aftermath. But as we look back we give God thanks for his continued faithfulness to us as a couple and as a family.

Over the past three months Rebekah has been on a slow reduction program of her steroids. She is still on 7mg a day but the Consultant is determined to take that down to 5mg. She has on the whole been coping remarkably well. Life however has had its major challenges with infection after infection for her as well as exhausting sleep patterns. For those of you who are parents out there you will understand the frustration when you start to settle your child for bed at 8 and you are still trying to do so at 11.45. When this is a one off you can cope with it but for over three months this was the case pretty much every day of the week with a few exceptions. Whilst Jillian and I are exhausted from lack of sleep Rebekah has boundless energy which is again down to the steroids.

Again we are grateful for all the help that we have received and prayers from many all over without this we could not survive.

The Consultant now wants to get Rebekah's medication down as she has been on the high dose steroids for too long. She is concerned about all the other side effects of leaving her on them going forward at any dose higher than 5mg. So we would continue to ask you to pray that we will be able to get her down to 5mg asap and that there will be no serious relapses as a result of doing so.

One very positive bit of news is that we have shared on many occasions the issues that Rebekah has with her memory. These past couple of weeks Rebekah has been in a poetry competition in school reciting Ally Bally Ally Bally bee. She was selected along with two other from her class to enter the whole school poetry competition and last night she came first for the primary 2 classes. This has given a huge boost which we give God thanks for and indeed we give God thanks that despite her memory issues she has been able to do this.

Over the last couple of months we have been receiving help from a charity called Epilepsy Scotland which has been helpful for us just to be able to talk to people who understand some of the condition that we are dealing with day in day out. They are looking to see what other help and assistance that they can get for us particularly in the area of getting Rebekah to sleep at night.

Prayer

1. Please continue to pray for healing for Rebekah
2. Please continue to pray for the other members of the family as we deal with the situation day in day out.
3. Please pray for wisdom for the consultants treating her - particularly as the conditions are so rare they are learning a lot from Rebekah.
4. Please pray for continued progress at school.

Thanks

1. We give thanks for all the help received.
2. We give thanks for Rebekah continued high spirits and how brave she is taking her medication every day.
3. We give thanks for her success last night in the Robert Burns competition in school and the boost this has given her.
4. For God provision for us over these past two years.

There are a number of verses of scripture that come to mind but we just ask God's will to be done with Rebekah and that we would see his hand in everything.

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

Tuesday 27 July 2010

At present, Jillian and the children are away on holiday for a few days with family friends in Northampton. We are grateful for Bill and Elizabeth's willingness to have them with them for the next few days. I have now arrived back in Livingston to find a message from Rebekah's consultant on our answerphone.

The latest tests that were carried out have come back with positive news and as a result following a consultation between the Rheumatology team and Neurology Consultant they have decided to start the reduction process of her steroids. From next week we will reduce her dose by 1mg. This will be a very slow gradual reduction as the Consultants believe that they need to take it very slowly indeed. So once she has been on this dose for a month we will have a further discussion with them to ascertain as to whether we can reduce the steroids further.

This is a very important milestone as we need to find out whether her condition which has been medicated to date flares back up as the dose of medication given is reduced.

Thank you all once again for your continued prayer support for Rebekah and the rest of the family.

Jonathan, Jillian, Abigail, Rebekah & David.

Tuesday 15 June

Just had a call this evening from the Consultant at Sick Kids to inform us of the blood test results. Unfortunately, the results are mixed, on the one hand the test that they have been using a lot to watch the progress on her Sarcoid was stable but they are very concerned with her kidney function and have said that she is now to undergo some further tests.

The consultant was making contact with Paediatrics Consultant here in Livingston to arrange for her to be seen at the local hospital in order to repeat all of her bloods and also to be examined by the Paediatrician, depending on the examination we may need to take her across to the Sick Children's hospital to meet with the Rheumatology consultants.

Rebekah has been complaining of joint pain in her legs and also the temperatures have started back up. Both are concerns for the Consultants at this time and therefore due to this and the latest blood results they will maintain her medication at the present level until they get the results of the next lot of tests.

We give thanks for the stability that Rebekah has had over these past weeks but would also ask you to continue to pray for her as we start going through yet further tests that she will co-operate and allow them to do the blood tests without any fights.

Wednesday 19th May 2010

Dear All

Thank you once again for all your prayers for Rebekah over the past few months. These past few weeks Rebekah has been doing a lot better and this has now been born out today at the Consultants appointment. Her latest brain scans are in the words of the Consultant "very good indeed" and her bloods were the only place that they were slightly concerned about today. They have repeated her blood tests and decided not to repeat the brain scan for three/four months unless there is a deterioration in the short term.

Once the results of today's blood tests are known the Consultants will decide between them whether they should commence the reduction of her steroids. They will want to monitor this closely to ensure that there is no deterioration in her health in the mean time.

The Consultants have said today that they are very conscious that the condition is medicated at the moment and they need to find the level of medication that Rebekah needs to be on to remain in a stable state. What they have said is that the current doses of medication that she is on is still double what they are happy to have her on long term so ideally if the bloods are ok today then they will want to try and reduce over the coming weeks her medication by half.

We continue to appreciate all the prayers of folks in various parts of the country and around the world for Rebekah and ask that you continue to uphold her in these days that we may continue to see improvement day by day.

It has been great these past weeks to see how well Rebekah has been doing with her school work and also to see how her speech has come on leaps and bounds. It has also been good from a family point of view that Rebekah has had this period of stability which has meant our loyalties haven't been split between the children as much as it has been at times over the past eighteen months which has been great.

In addition to the above it has been good to see Jillian coping much better. We are in the process of arranging for Jillian to take a career break to enable all the different appointments to take place without interfering with work.

Thank you all once again.

Jonathan, Jillian, Abigail, Rebekah and David

Tuesday 18th May 2010

First of all apologies for not updating this sooner. I will post a more detailed update tomorrow but just to let you know that Rebekah's condition over the past few weeks has been pretty stable. I have been out of the country for about 5 1/2 weeks hence the news blackout as I have been catching up with my backlog since I got back.

Tomorrow, we will meet with the consultants at Sick Kids which we hope will be a very positive meeting and one where we may see some reduction to her medication provided they are satsified with her progress and that the latest brain scans are in order.

So tomorrow when I get back I will provide a more upto date picture but in the meantime thank you very much for your continued prayers for us.

Wednesday 24th February 2010

Thank you once again for your continued prayers for Rebekah.

Just a quick update on the appointments with the consultants at sick kids. The meeting went well, the consultants believe the medication is working. They are still not 100% certain on the diagnosis but now believe very strongly that the epilepsy is a lot more linked to her inflammatory condition than it being a totally separate condition.

They have agreed that she would remain on the same level of medication as she is now for the next three months and we will be seen by two of the Consultants again on the 19th May. The brain scans and blood tests will be repeated again in four to six weeks time.

In three months' time if there has been relative stability they will start to reduce her medication, they still feel the level she is on just now is still too high for the longer term and would like to get it down to half the current dose at least.

We are very grateful for all the support we have received over the past number of months and would ask you to continue to stand with us through these difficult days.

6 February 2010

First of all our apologies for the delay in publishing this blog. January has been an exceptionally busy month for me personally and has had several additional challenges for us apart from the daily issues faced with Rebekah's situation.


It is hard for us to believe that we have just had the first anniversary of Rebekah's initial seizure. When we last wrote Rebekah was going for a further brain scan and was on very high dose steroid treatment along with an immuno suppressent drug and anti convulsion medication. You will recall that we were unsure whether or not the medication was working and that the consultant was concerned, as a lot of Rebekah's symptoms hadn't settled down in the same way as the previous time that she had the treatment. A number of weeks have now elapsed since and the consultant has eventually come back to us to confirm that the medication is in fact working. This is an enormous answer to prayer which we are exceptionally grateful for. The consultant now believes that the symptoms we are experiencing with Rebekah and the behavioural issues that we have at different points in time are in the main due to an adverse reaction to the medication. Also, we are told it is possible to have what appears to be an epileptic absence with no epileptic discharge taking place.


We continue to take Rebekah to the throne of grace and believe that God will heal her permanently. For Jillian and I to know that the medication is working is one thing but we have already been at this juncture before and within six weeks of being told that things were much better she was back to square one. Please pray with us that this improvement will continue.


As Rebekah's steroid treatment has been reducing over these past weeks various difficulties have hit us along the way mainly in the area of exceptionally challenging behaviour. The problem then becomes exascerbated by the fact that she has a little brother who dotes on his big sister and thinks anything Rebekah can do I can do 100 times better. Thankfully as the medication has been reducing each week we see improvements in Rebekah's behaviour.


On the 24th February we are due to have a joint consultant appointment at Sick Kids in Edinburgh. This will involve the rheumatology team and the epilepsy team and we will wait to see where we go with the medication after this meeting. It is quite a thought that we will meet with four consultants at the same time which makes us all the more appreciative of the care and attention that the Drs at the hospital give to our daughter but also confirms to us how complex Rebekah's case actually is that we need to have all present for this meeting.



Jillian has been signed off her work for a number of weeks now and has been suffering from depression this has added a lot of additional pressure. There are many things going on in our lives at the moment that we cannot share in this forum and we would ask that you pray for us as we deal with the challenges that they bring and that we will be able to find resolutions to these issues.


Finally, I am due to travel next month on business to a couple of the countries in Asia which I am not prepared to publish on this forum. It is safe to say that this will be a very dangerous trip and I would value your prayers for me for it and also for the family left back at home. I will be gone for almost three weeks which will bring a lot of pressure to bear on Jillian.


Prayers points:


1. Continued improvement for Rebekah

2. For the meeting with the Consultants on the 24th February

3. That the medication would continue to work and that she will be able to cope with it.

4. That her behaviour would continue to improve.

5. Jillian's own health and for mine as well.

6. For my trip to Asia in March.

Update 25 December 2009

Hi All,

First of all a very Merry Christmas from a very snowy Livingston to you all. Today we have celebrated the Birth of Jesus and we give thanks for the fact that was born in a manger all those years ago. We also give thanks for the fact that He died to save each and everyone of us. May God be with each and everyone of you at this time of the year.

I am writing this at the end of Christmas day 2009. As a family we have spent the day over at my Sister's house where the whole family congregated, with the exception of my other sister Ruth and her family. A good time was had by all.

This week has been an exceptionally busy one for us as a family, on Monday we made the trip through the snow and ice upto Inverness, to visit with my Gran who turned 100 on Tuesday of this week. It was great to be with her and to be able to take Jillian and the children along as well. Rebekah coped really well, although half way through it was becoming quite overwhelming for her.

Turning to an update on Rebekah, ten days ago we had an appointment with the Consultant from Sick Kids to review Rebekah's case. Rebekah had been coping quite well on the medication so far. However, we were unsure whether it is actually doing what the Consultants hope that it will do. So far a lot of the symptoms that we would have expected to disappear have stayed despite the amount of medication being pumped into her. This is exceptionally worrying as you don't want to give your child medication at the dose that it is if it isn't actually doing the job that you expect.

During the last week we learned that Rebekah is to have another 24 hour brain scan next Tuesday 29th/Wednesday 30th. This will help the Consultant find out whether the epilepsy is being treated or not. She will inform us of the results by telephone once the scan has been reported on.

We have been experiencing some difficult days with Rebekah over the last few days and have been finding her behaviour exceptionally challenging at times. We know that it is the medication as much as anything else and we can only do our best to cope with it each day.

Thank you for your continued prayers for us, we do very much appreciate them.

Please continue to pray for us over the coming weeks. Some prayer points:

1. Rebekah will be healed

2. Rebekah will continue to tolerate the medication and be able to attend school when in session.

3. That 2010 for us as a family will be one of blessing and that we will see the Lord's hand in all that we do.

4. Pray for Jillian and I as we cope daily with the struggles that Rebekah's health brings.

5. Pray for Jillian that she would be able to return to work in the New Year.

6. Pray for Abigail & David as they cope with their sisters mood swings and being the brunt sometimes of their sister's temper tantrums.

Update 8 December 2009

Dear All

I just wanted to post a short update at the moment to ask you to continue to pray for Rebekah. She has just started her fourth week of steroids and immunosuppressants drugs. So far she has not had too many bad side effects, although there have been some pretty difficult days over this period. We now have our very hungry daughter back and I am considering putting locks on the cupboard doors to keep her out.

We are very grateful to God that to date Rebekah has managed to continue to go to school and was one of the narrators in her christmas nativity last week. She had to say one sentence which she did very well indeed.

These past four weeks have probably for Jillian and I been the most difficult believe it or not since this all began. I think the full impact of what is going on has hit us afresh and we have been really struggling to cope with it all. Jillian was signed off her work again last week and I am hoping that she will be able to go back to work soon. I know I feel I have been running on empty most of the time.

Part of the problem is that we are in what I term no-mans land just now as we have a lot of questions for the consultants unanswered, but also until we get the next brain scans done which we are told maybe before Christmas but equally it may be just after we don't really know if the drugs are actually working. We will see the consultant next Wednesday (16th) which will hopefully provide us with some information.

We appreciate your support and prayers for us as a family more than you will know. I think it is also good to remember that we do have a God who hears and answers prayers. Our prayer for the end of this year and the start of the new one is that the Lord will heal our daughter and that we will have a much better 2010 than this year has been.

Thank you once again for your support.

Jonathan, Jillian, Abigail, Rebekah and David