Luke Wood's Blog

GBS Update: Friday 13th January 2012

2012-01-15T14:28:00.000Z

It's just over two months since the last update, and there have been a number of developments in that time which I wanted to let you know about. These updates have always been multifunctional, updating a number of different groups of people about how things are progressing. Please feel free to skip to the prayer points at the end if you're most interested in the headlines!

In November I had an appointment with my consultant for rehab (Dr. Sumanasuriya). This was both encouraging (not least because it gives me an excuse to visit the hospital teams who cared for me while I was a patient), but also a little disconcerting. I showed her the tremor in my hands, and she said confidently that she did not recognise it as a GBS-related tremor. She also said (contrary to my memory of things) that she did not remember, nor had any record of, this sort of tremor when I was an in-patient with her on the rehabilitation ward.

She felt that there may be a number of reasons for the tremor, among them a thyroid problem, the medication I'm on, or a relatively common neurological disorder called Essential Tremor (ET).

I received my blood test results from the GP yesterday which ruled out any thyroid problems, and although I already have an appointment with my neurologist consultant (Dr. Katifi) in early February for GBS, I have now been referred to him by the rehab consultant for the tremor as a separate condition.

The main reason I found this news disconcerting is that Essential Tremor is degenerative and there is no cure (although some drugs can alleviate the effects of the tremor). Whereas I had assumed that the tremor was one of the after-effects of the GBS, which would slowly improve over time, it is possible that this is something which will actually worsen with time.

So I'm looking forward to my appointment at Neurological Outpatients on February 6th as I'd really like to find out what this is, and to be able to move towards treating it if possible, or at the very least changing my drugs to see if we can improve things. It seems unlikely to me that it is brought on by the drugs I'm on, because as I have weaned off the anticonvulsant (which is one of the drugs used to treat ET) it has worsened, not improved.

On the more positive side, my stamina and strength have been gradually building to the point where I am about to start using a treadmill again, and there are now plans in place for me to formally return to my PGCE course.

From next week I will be at the school I attended as a pupil one day a week (voluntarily, initially), building up gradually toward officially re-joining the course, taking half a class, and then upwards to 50% of a qualified teacher's timetable. I'm still hoping to be qualified by the end of this academic year, which would enable me to search for a job beginning in September.

For those of you who pray, I would love you to pray along the following lines:

Thank God that, as my Dad said the other day, we're talking about a tremor in the hands and not about the ability to walk!
For peace of mind in the uncertainty, that I would have a sense of what God has for me in this.
That we would be able to make satisfactory progress in the appointment with Dr. Katifi on Monday 6th February, that he will be able to perceive what the problem is and how to solve it.
That my general strength and stamina would continue to improve throughout the year, enabling me to get back to work as soon as possible.
Thank God for a highly cooperative university and two local schools; that I would be able to take advantage of the arrangements on offer and progress well on the PGCE course.

Thank you for your ongoing interest and support, it is not taken lightly and very much appreciated!

Love Luke x

GBS Update: Friday 28th October 2011

2011-10-28T17:29:00.001+01:00

Yesterday it was nineteen months since I was admitted to the Royal Hallamshire Hospital in Sheffield. One of the timeframes we were given at the time was that I could be in Intensive Care for up to eighteen months, so I hoped it might be encouraging to write down where the recovery is at. When compared with the idea that at this point in time I may have been only one month out of ICU, it is happy news!

Recently my physiotherapist decided that, for the first time in this recovery, my unusual walking gait has more to do with weakness in my right leg than nerve damage. This means that, whereas normally all I can really do is wait for nerve repair to happen and 'go with it', I am beginning to have more things that I can actively work on. It is encouraging to get more control back, bit by bit.

There is still nerve repair that needs to happen, however. This is in the feet, centering around the big toes. They comprise such a small part of the body, yet the difference they are making to my balance as they gradually come back to life is tremendous.

Other aspects of the recovery still need work as well. My general body strength needs improvement, as does my stamina and energy levels. I also have been left with a tremor in my hands which varies in magnitude from day to day. I have adapted to live with it for the moment and the neurologists don't expect further improvement in this specific area, but I would obviously much prefer my hands to get completely back to normal!

The consultant expects my recovery to go on until approximately March 2012, at which point he expects progress to stagnate, so I still have time to see changes before I should begin to be thinking about learning to live with what I have regained.

Obviously, my desire from the beginning has been that I would effect a full recovery, and that is what I am still aiming for. If you pray, that is the main thing I would love you to pray for me!

On the more practical side, my big goal at the moment is still to complete my PGCE so as to qualify as a teacher. The prospect is a daunting one, and yet there are a number of open doors in front of me which are making it feel more do-able.

The university, as I have shared before, have been supportive in allowing me to take on bite-sized chunks as I am able to do so, building up to a full-time, three-month placement. There is also the local school I worked in two years ago, who have offered to help me build up to that level of stamina. They have been incredibly open to the idea of me going in and getting involved again, which I'm really grateful for.

In order to start to earn some money, I have been able to plan to start doing some work for my Dad, who has set up a company and is starting to work on his own. The fact that I some experience in his field of work through my degree is working to both of our advantages, enabling me to earn some money, keep my brain ticking over, and enabling him to take on more work.

Possibly the biggest challenge with the next phase will be trying to get the balance right between:

Physical exercise and rehabilitation
Getting back to the classroom
Producing the academic work in order to pass the PGCE
Socialising
Earning an income

Any one of those things alone would be enough to occupy me at the moment, with current energy levels, so I will need wisdom to know how to juggle everything.

"For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them." (Ephesians 2:10)

What happens after finishing the course, I'm not quite sure. At the moment I feel that I'd like to be able to consolidate the PGCE with at least a couple of years teaching, but we'll see. It is likely that I will need to continue to have an expectation of incremental changes rather than leaps forward. What I'd love during this next season is to have a growing sense of what God has prepared for me in the days ahead.

Thank you so much for your interest in this journey, I am so grateful to continue to have supporters cheering me on!

With much love,

Luke x

GBS Update: Thursday 11th August 2011

2011-08-11T14:01:00.007+01:00

So here we are over 16 months in, and the recovery continues. It's hard to comprehend what it would have been like, had the doctors' initial concerns about the possibility of being in intensive care for up to 18 months been realised.

In the four months since the last update I have seen marked improvements, and I have had the privilege of meeting more of you who have been praying for me. At Easter it was a joy to make an impromptu visit to Citygate Church in Bournemouth. It's seven years since I left, yet to hear how earnestly people prayed for me, particularly at the darkest moments, was incredibly humbling. So too, was a visit to St. Michael's Plas Newton, Chester, where, twenty-two years after my family moved away, the church there are still praying for my recovery. We have been reunited with numbers of you from the past, and that is not to mention the many new faces I have met who greet me with a story of what it meant to them to be a part of this story.

I am honestly so grateful for all of you. You may have noticed that I recently uploaded the archive of email updates from last year onto my blog, and it struck me again how much of a daily battle it was, and what stickability so many of you have shown in keeping up with progress. Thank you so much.

If it was a daily battle back then, it remains so now, though of a different sort entirely. Rehabilitating is not half so glamorous as intensive care!

Back at Newday

You may remember that last year, towards the end of my hospital stay, I was able to visit Newday, a Christian youth festival I worked at in the past. That visit was in a wheelchair and, though exhilarating, was also exhausting. In the first week of August this year however, I was at the whole event, helping out in the site office where I was able to. Where my progress often seems invisible day-to-day, being at the event in this way highlighted to me how far I have come over the past year.

There are two ways in which my healing continues:

Nerve repair
This is ongoing, and I was told by my neurologist in June that it would be reasonable to expect the healing process to go on until about March 2012, and after that to expect to see only minimal changes. This makes the next 7 months or so feel a bit like a recovery race, to see how much better I can get within that time. I have been looking at ways of modifying my diet so as to encourage nerve repair, however this is incredibly difficult to do as some of the chemicals which apparently inhibit nerve repair seem to be present in most foods! I am just trying to make all the reasonable adjustments I can, whilst not getting too hung up on it.

I am still weaning off an epilepsy drug (Pregabalin) and am hoping to start weaning off the last drug (Amitriptyline) soon; both drugs have been used to control nerve pain in my feet.

So far, the nerve repair is such that I am now able to move all my toes, and I am noticing marked improvements in my balance because of this. There is still not a full range of movement in my feet, but the signs so far have been encouraging - a full recovery is still possible.

Strength and stamina building
This aspect is something which I can expect to continue to improve for a while after the nerves have finished repairing, and is probably the element which requires more patience on my part! A funny/slow walk is easy enough to deal with, but I find not having the energy resources to live as I once did much more frustrating at times. I have to plan in a number of days in the average week where I do very little, and if I don't take the rest times my body enforces it!

Planning how to use my energy is still very important, and I have spent more of it over the past months in testing the waters with attending events like Newday, and on a family holiday so generously given to us by friends who have been praying throughout this illness, than I have in the gym or the pool. This has been simultaneously encouraging and frustrating! It is so good to be able to start to get back to the stuff of normal life, and to see how far things have progressed; it can also be discouraging to see how comparatively little I am still able to do compared with life as it was, pre-illness.

I am learning to take a day at a time, and that my penchant for planning and goal-setting actually doesn't get me very far in and of itself. Learning how to react to events as they unfold is a much more useful skill to have, and is one I am having to learn as I go! As such, returning to the PGCE course is still very much on the agenda, but I am waiting to see how my energy improves. In the meantime I find myself with a need to start to provide some of my own income again, and have been looking for do-able, part-time jobs in the local area which might also help with my rehab. I have had one interview to date, and am still waiting to hear.

If you would like to pray for me, perhaps you could pray about the following specific things:

That my nerves would repair all the way down to the tips of my toes, and that the healing would continue until we see a full recovery.
That I would be able to wean off the remaining drugs as quickly as possible - it would be great to be drug-free by sometime in the autumn.
That my energy would continue to increase steadily, and that I would know the best and most effective ways of encouraging this, whilst also enjoying life.
That I would be able to find appropriate employment which fits with my abilities and limitations, especially in the current climate where there is so much competition for the jobs that are available.
For my family, who, after a difficult couple of years, are beginning to plan for the future again. Dad is working a few days a week for himself, and enjoying it. Mum and Dad are able to spend more time together now, and are thinking about how their time will be used in the next season. Ben is enjoying his work and planning to move out in the autumn, as is Joel, who has a place at RADA starting in September. I could well be the only son left at home in a matter of months! I will need to know when the appropriate time is for me to become more independent by moving out again (for the fourth time!).

I have taken inspiration recently from this song by Chris Haines:

O troubled heart, do not be afraid
Trust the Lord your God, let not hope be swayed
He will hear your cry and will give you aid

O troubled heart, though your foes unite
Let your faith be strong and your armour bright
You shall overcome through His power and might

O troubled heart, when you're at your worst
Seek His righteosuness, put His kingdom first
He'll provide your food, and will quench your thirst

O troubled heart, when your path's unclear
He will rescue you and dispel your fear
In your greatest need He is always near

O troubled heart don't give in to sin
It will prove to be a broken cistern
Bleed you of your strength, dry you up within

O troubled heart do not be condemned
Sorrow you may feel, but God is your friend
He will give you grace to the very end

Able, He is able
To deliver, to deliver
Able, He is able
To deliver, to deliver

He is able, He is able
To deliver you
He is able, He is able

We all so appreciate your interest and support; thank you so very much. It is not taken lightly.

With much love,

Luke x

GBS Update: Sunday 27th March

2011-03-27T22:15:00.003+01:00

Today it is one year since I was admitted to the Royal Hallamshire in Sheffield with Guillain-Barré Syndrome. As you can imagine it has been the worst year of my life, yet at the end of it I don't find it as difficult as I might to thank God for what He has done. I wanted to take this milestone as an opportunity to express my gratitude.

Before I do, I thought I'd let you know how things are progressing:

Last time I sent an update I had been told that my arms could be passed off as normal. The tremor I was left with has been improving gradually, and now most of the time you would only recognise the tremor as being in my fingers. I can do most of the things I need to with my hands, with a few exceptions like using Mum and Dad's temperamental new hob!
My stamina and core muscles seem to be linked, and both have also been improving gradually; I can accomplish a lot more in a day now than a few months ago, but I'm most definitely not back to normal yet. The same is true of my legs.
Where I have seen the biggest improvement so far this year is in my ankles. My feet have a lot more pick-up than they did, and strength in the ankles is returning bit by bit.
When I saw my physio yesterday (this usually happens once every three weeks) she said that the one part which hasn't come back at all yet really, is both big toes. I can move all the other toes a bit now (a very odd feeling after so long!). In terms of axon regrowth, it looks like it is just the big toes left to go. At a rate of 1mm per day hopefully we will begin to see improvements within a few months. The rest of my feet still need a lot of strengthening though, I have yet to get a heel-strike back however so I still wear splints in my shoes to assist with picking up my feet; most of my pain persists in the feet.
I'm weaning off the epilepsy drug which has been used to relieve pain. If we carry on at the current rate, I will be off it by the summer, and will be left with just a small dose of another drug which helps me sleep at night. As well as trying to figure out if pain levels are ok, I have found that this epilepsy drug seems to have been suppressing a lot of emotions. There are also the withdrawal symptoms to consider each time the does is lowered.
I recently had a meeting with the director and tutor of my university teacher training course and I am able to start getting on with essays whenever I like, building up to a full-time placement when I am ready. It's basically an open door to be able to do what I can when I can. If you pray, you might ask for clarity over the future. I am keen to complete the course, but once that's done there are any number of possibilities.

There is so much to be thankful for!

I am grateful for a condition that has taught me more about life, and more about God, in the space of a year, than I possibly could have learned in a shorter space of time.

I am grateful for an experience which has shown me that for the Christian there is no fear in death.

I am grateful to be alive!

I am grateful that, one year on, whereas by initial predictions I should still be in Intensive Care with another two years in hospital to go, I am at home and beginning to think about getting back to my life again.

I am grateful to have had the astounding support in prayer and other ways of such wonderful people. So many of you have impacted my life and my situation through what you have done. Winchester Family Church, Life Church Southampton, Citygate Church in Bournemouth, City Church Sheffield and St. Michael's in Chester, many of you have done so much through your prayers and in other practical ways. There are many others besides, people who have been and were praying in the most dire of moments, and - just as importantly - in the most mundane of moments along the journey. Thank you, all of you for trusting God on my behalf.

I am grateful to God, for all of the above, and for giving me a second chance at life!

Easter weekend 2010

I give you all the credit, God— you got me out of that mess,

you didn't let my foes gloat.

God, my God, I yelled for help

and you put me together.

God, you pulled me out of the grave,

gave me another chance at life

when I was down-and-out.

All you saints! Sing your hearts out to God!

Thank him to his face!

He gets angry once in a while, but across

a lifetime there is only love.

The nights of crying your eyes out

give way to days of laughter.

When things were going great

I crowed, "I've got it made.

I'm God's favorite.

He made me king of the mountain."

Then you looked the other way

and I fell to pieces.

I called out to you, God;

I laid my case before you:

"Can you sell me for a profit when I'm dead?

auction me off at a cemetery yard sale?

When I'm 'dust to dust' my songs

and stories of you won't sell.

So listen! and be kind!

Help me out of this!"

You did it: you changed wild lament

into whirling dance;

You ripped off my black mourning band

and decked me with wildflowers.

I'm about to burst with song;

I can't keep quiet about you.

God, my God,

I can't thank you enough.

Psalm 30

February 2011

GBS Update: Thursday 13th January

2011-01-15T14:39:00.000Z

It's been about 6 weeks since the last full update, and there are a number of things which I would like to let you know about, if and when you pray for me.

I have had appointments with two different consultants, and have another with a third consultant tomorrow.

The first was with the neurologist who has been overseeing my care since I was moved to Southampton in April. My perception of his approach has been that he seems to take a pessimistic stance, however at my appointment in December, he smiled (for the first time that I had seen!) and said that he felt my progress has been fantastic so far, and that it could be a realistic goal to be running by June. Needless to say, I was extremely pleased with his reaction!

One thing the neurologist wanted was to be able to measure my progress, so he arranged for me to see another consultant for an EMG test. I had already had one of these in April and another in June. They basically attach pads/insert needles into your arms and legs, send electric shocks down your limbs and measure how much current is passing through the nerves. So I had my third EMG on Tuesday.

The results apparently showed that my arms "could be passed off as normal", which is brilliant news. There was noticeable improvement in my legs, however in my feet they found that, as well as the linings of the nerves being stripped away, the axons themselves have been damaged. I know from previously that the axons regrow at a rate of 1mm per day/1inch per month.

This news reflected what I can physically do: whilst I can do 99% of the things I need to with my arms, hands and legs, my feet are still floppy, and my big toes are still completely dead (the other toes I can wiggle a little bit). Whilst this might seem a little disappointing, the doctors I saw on Tuesday were keen to point out that because I am relatively young, the body will continue to attempt to repair all this damage for years to come, whereas in an older person the body may truncate the repair process at an earlier time.

His parting comment was to say that, although it is likely that I will regain full function, the readings on any future EMG test may never go back to normal. What this means in practical terms is that the tremor I have in my hands may never fully go away.

My feeling about all this is one of gratefulness to have come so far in so relatively short a space of time. However, I have believed from the beginning that I would get COMPLETELY back to normal. So perhaps you would pray for me along those lines? It is really valuable to have the information from the doctors, and that information can fuel our prayers, specifically that:

The axons in my feet would regrow, where there has been damage.
The nerve coatings (Myelin Sheaths) would continue to be repaired all over my body, specifically in my limbs.
I would find the appropriate level of exercise and activity (such as school visits); enough to stimulate the muscles and the mind as they regain activity, but not so much that I get exhausted.
My family, particularly my parents, would have the right opportunities to get back to their lives at the appropriate time. This has been a massive upheaval for them, I would like to see them blessed as they have blessed me over the past year.
For strength, encouragement and patience for myself over this time; that I would know God with me and a sense of purpose from Him as I take the next steps He’s put in front of me.

Thank you so much for still praying with us almost 10 months into this situation, I so appreciate every prayer. God is able to do what we aren't, and the work that is left to be done in my body is certainly no greater than what He has already achieved.

Much love,

Luke x

GBS Update: Monday 20th December

2010-12-20T13:35:00.001Z

An update from Mum and Dad:

As we approach Christmas, and the end of 2010, we wanted to send an update to say thank you to all of you who have journeyed with us throughout the most part of 2010. Many of you we have never even met, and yet as you have mailed us on many occasions, and prayed alongside us, we have felt as if we do know you. Names on paper have become real friends in our minds eye and in the midst of adversity every one of you, known and dear to us, or still yet to meet, has impacted this path more than you will ever know. It has been a life changing year, and one in which we have seen and known the rock solid faithfulness of our Father God.

Luke goes from strength to strength, and whilst a long way from full health, is alive and almost kicking!! We had planned at the outset of the year to go away for Christmas, but it looks likely that snow and an almost shut down Heathrow will mean we will celebrate at home.

If there is one thing to take from this experience, it would be to NEVER fear the trial. There are times in life when we can imagine the worst happening to us or our loved ones; yet we have found that even when it does, God NEVER leaves you, but carries you through when you trust Him. So often in the Bible He tells us not to fear because he knows we are so prone to it! But HE is totally faithful, and is working out His purposes in each of our lives. He truly is a Mighty God, and we stand in awe of Him and His ways.

‘They did not conquer the land with their swords; it was not their own strong arm that gave them victory. It was Your right hand and strong arm and the blinding light from Your face that helped them, for You loved them.’ Psalm 44: 3

May you know the peace that only He can give this Christmas and throughout 2011.

With much love and heartfelt thanks

Gary and Debbie

GBS Update: Thursday 2nd December

2010-12-02T12:09:00.002Z

With snow days around the country, I thought people may find themselves with more time than usual to read an update.

Today is my first in eight months without any of the drug, Fentanyl, in my system. I feel pretty apprehensive about how the next few days will go, but also excited to be reclaiming my brain again. As I have weaned down the dosage, it has felt as if a cloud I had unwittingly been living under has been lifting. Fentanyl works by numbing the brain to pain, whereas the drugs I'm now left with focus on the nerves themselves, which are the cause of most of my pain.

I have had the opportunity to get back into a school environment once or twice recently, which has really helped me to start thinking about normality again, as well as giving me an impression as to what needs to improve before I get back to normal.

Last weekend I celebrated my 26th birthday, and in so doing marked 8 months of GBS. It was quite a poignant time, recognising that the original prognosis was up to 18 months in ICU, and that without the technology of the 21st century, without a world class health system, without armies of health professionals, armies of pray-ers and one great big God, there would have been no birthday to celebrate. I am truly thankful for everyone and everything which have come together to help me to this point. Thank you!

In addition to weaning, my main challenge is my feet: movement and sensation, both of which are improving, but both of which have a way to go! I also need to continue to see improvements in fatigue levels and stamina. Your prayers would be so appreciated - the journey is far from over!

I keep being reminded at each stage of the recovery that He that is in me is greater than he that is in the world - it is as true today as it was in those dangerous moments in April when it helped me so much.

With love and thanks,

Luke x

- Posted using BlogPress from my iPhone

GBS Update: Monday 15th November

2010-11-15T16:56:00.004Z

A briefer update today, which I hope will fuel your prayers in the days to come.

First, to thank you again for the commitment so many you have made to pray with me all the way to the end of this journey. You are such an encouragement to our whole family, and we are so thankful for every one of you. We recently had the privilege of going back to visit the church I used to work for, Life Church Southampton: if ever there was a reminder of the very real support I have had in prayer from the body of Christ, this was it. You are such a blessing!

We are constantly getting used to what my Mum calls a 'new normal'; things rarely stay the same from one week to the next - although it doesn't always feel that way.

The most significant changes lately are:

I drove to a friend's house on my own last week. It was only a short journey - on very familiar roads - but it was thrilling to be able to leave the house on my own. I was able to walk to their house from the car independently with my new walking stick, but on the way back to the car I had some assistance (it really was very dark by then!).
The temporary downstairs bedroom I needed for weekend visits from hospital has been turned back into a dining room again - this feels like a real milestone, marking the fact that I haven't needed the bed for months.
After discussion with my GP I have started to wean off the most addictive painkiller I am on. So far it's going well, albeit not without slight withdrawal symptoms (headaches, nausea, tiredness and aches).
I almost didn't share the following now that I have regained most of the sensibilities of a 'normal' person; but on a journey in which you have heard about the workings of my innermost parts, hearing that I have been able to take a bath for the first time really doesn't feel that personal.

All of this causes great thanks and praise to a God who has seen the whole of this journey from beginning to end; He's sustained me this far, and will do until the end.

Please pray:

For continued progress towards independence - driving, walking, socialising, there is still much progress to be made!
For my next GP appointment, which is two weeks today. By that point I plan to be on the minimum dose of the drug I'm weaning off at the moment. He will talk through the effects so far and decide whether or not it is OK for me to come off the drug altogether. It would be great to be in a position to make a start on weaning off one of the other two drugs I'm on, but we won't be able to do that until we've completed this first stage. I'm aiming, god willing, to be drug-free by Christmas!
For the side-effects of the weaning process to be as few and as small as possible. Withdrawal symptoms, especially after many consecutive months on the same drug combination, can be rotten. Please pray that I won't have to compromise on the independence side of things too much during this process.

With many thanks, once again!

Much love in Christ,

Luke x

GBS Update: Friday 5th November

2010-11-05T15:13:00.000Z

I'm really encouraged with the progress over the past couple of weeks, I can't wait to tell you all about it!

Firstly, could I ask if you have forwarded one of these updates to anybody - at whatever stage of this journey, whether just the one message or more - whether you could send this particular update onto them once again? A couple of people seem to have lost touch, particularly since Mum and Dad lost their email database a couple of months ago, and I hope people will be encouraged to hear how things are going. Remember all the latest updates can be found online at www.luke-wood.org.

Being a walking man again doesn't take much getting used to - I love it! I seem to have progressed from the gait of a wobbly toddler to a man who looks slightly inebriated. I feel so much more stable than I did at first - that's not to say that I don't still have my wobbles, but I'm certainly not so much of a falling risk as I used to be. I've been walking outside too, although my physio has ordered me a walking stick and suggested I use it whenever I'm outside as a signal to others that I need a bit of extra consideration. Without a stick, I do need someone to hold onto when not at home.

I have been practising driving too, aiming to get at least one small journey each day. Ironically, taking the slower routes actually wears my leg muscles out much more quickly; motorway driving (albeit in the slow lane) is a lot more manageable. My blue badge came this week which will make it possible for me to start to make trips out in the car on my own when the time comes.

God has blessed me in many ways throughout this season - not least through putting experts around me who are able to directly help with aspects of my rehabilitation. My Aunt Tracy is a nurse and, probably without knowing it, has given invaluable advice about getting started in the mornings. This has been so important on the days when the pain of getting out of bed seems too much. Esther Hatcher (my old housemate) from Life Church Southampton is a swimming teacher and she joined us in the pool at half term, giving me technique advice which has pushed me up from from the 'medium' lane to 'fast', along with other exercises to try in the pool. Clare Hughes is a neuro rehab physio, and has been faithful in coming round every week or two to give extra exercises, practice and general encouragement - particularly helpful in the long gaps between NHS physio appointments!

All of these people have had a real impact in different ways - thank you guys so much for your interest and help! And thank you God, for them, for the loving family and friends God has put around me and for the many prayers that have gone up for me throughout this condition.

I also have Janet, my NHS physio, and Dr. Chaplin-Rogers, our family's GP who seems fascinated by the condition. Please pray for these two, that God would give them wisdom.

A direct answer to your prayers over the past weeks has been that my energy levels seem to be stabilising. The fentanyl patches (the most addictive drug I'm on) seem to be affecting my physical ability considerably less than before, so much so that a week today when I next see my GP I will be asking him to reduce my dosage. We have been praying that we would be in a position to resume the weaning process for months - it is great to see an answer! Please pray that the sustained energy levels would continue, along with continued strength in my legs, arms and core (middle).

If you do pray for me, please don't forget to thank God for everything he's done so far. Many of you will remember the fact that I was told at first that I could be in ICU for 12-18 months, and here I am 7 months later swimming in the fast lane and driving on motorways! Without your commitment to prayer and His faithfulness to answer I would not be where I am today.

I am a big history fan, so I read a lot of historical books, both fact and fiction. It occured to me the other day that, if my fanciful wish to have been born hundreds of years ago came true, I would be dead. What a privilege to be alive at a point in history where it is possible for a machine to take over your breathing, and in a country where such first class provision is available, free at the point of need. Another cause for thanks to God!

I've been reading the book Job recently; the following (frrom chapter 22) struck a deep chord in me this week:

"Is not God high in the heavens?
See the highest stars, how lofty they are!
But you say, 'What does God know?
Can he judge through the deep darkness?
Thick clouds veil him, so that he does not see,
and he walks on the vault of heaven.'
Will you keep to the old way
that wicked men have trod?
They were snatched away before their time;
their foundation was washed away.
They said to God, 'Depart from us,'
and 'What can the Almighty do to us?'...
Agree with God, and be at peace;
thereby good will come to you.
Receive instruction from his mouth,
and lay up his words in your heart.
If you return to the Almighty you will be built up;...
For then you will delight yourself in the Almighty
and lift up your face to God.
You will make your prayer to him, and he will hear you...
You will decide on a matter, and it will be established for you,
and light will shine on your ways."

Thank you Jesus, that when we're in agreement with You, we know Your peace in our hearts.

With love and thanks,

Luke x

GBS Update Monday 18th October

2010-10-18T16:03:00.000+01:00

Thank you, as ever, for your continuing prayers; they are making such a difference! In the fortnight or so since I last updated you there have been marked improvements. Many, if not all, of these have to do with my core strengthening, so a special thanks to those of you who prayed for a muscle you had never heard of for the first time after the last update.

I am learning that, thankfully, God isn’t restricted to my knowledge of what’s going on in my body. But I am also learning about the power of specifically targeted prayers – it’s as though they accelerate the healing process!

I am now able to walk short distances without any crutches at all! Four of us managed to get a short break away in the countryside last week, and there was much laughter and cries of thanks to God as on the first night I made an impromptu dash across the living room of the accommodation, crutch-less. That was over a week ago, and now I am able to safely walk around the kitchen to make a cup of tea without holding on to any surfaces, whereas the rest of the time I am using just the one crutch to help me get around.

I have also started to have a go at driving again. Before we went away I had a go at reversing up and down the drive, and just this afternoon I went on a short drive around the neighbourhood. I don’t know whether I was more amazed at the fact of how easy I found it, or the fact that my Dad, who bravely sat through the whole thing, considered me safe!

One of the issues I’m continuing to get to grips with is the side effects of the drugs. I am still taking four different painkillers, one of which is administered using a patch. Much like a Nicotene patch, it is replaced every few days and is a slow-release form of the drug. It is also the most addictive of the four, being a narcotic. As such, when we resume the weaning process, the doctor will be starting with this.

I am made very much aware when it is patch-changing-day by the extra pain, both stiff-pain all over (think very bad flu) and my usual nerve (“good”) pain from the knees down. Once the patch is changed, I experience a buzzy feeling as well as a sudden yet prolonged sense of energy. It’s like I feel normal again!

I am keen to come off this drug in particular as soon as I can. The reality, however, is that I still get pain breaking through the pain relief I’m already taking; I need the pain to reduce before we start to wean off the drugs. And yet most of the pain (the nerve kind) is a sign of healing taking place – which is a good thing!

So please could I ask you to focus your prayers in the following way in the coming days:

• Thank God for the amazing progress He has enabled over the past fortnight: the ability to walk crutch-free and to drive.
• Ask for more of the above, longer distances without crutches, and increased confidence on the road. Stronger legs and stronger core.
• That I would know God’s grace to me as I endure the ups and downs of the drugs while they are still necessary; yet that we would quickly reach a point where they are not.
• For continued grace and patience for my family as they support me as wonderfully as they have been through the ups and downs. It is not just I who has big decisions about the future ahead: we all need to know a sense of His grace and joy, yet also purpose from God at this time.
On Sunday I was encouraged to hear this verse afresh:

“I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God, who loved me and gave himself for me.” Galatians 2:20
It is this sense of Christ living me – of my life not being my own – that sustained me in the very moments that my life was in danger. Knowing that His eternal life was in me gave me inner confidence that I could not be snuffed out unless He had decided that. I did not need to desperately cling to life – I had the life of my Creator at the core of my being! What amazing riches we have in Him.

GBS Update Wednesday 6th October

2010-10-07T19:57:00.000+01:00

Last week I asked you to pray for release, in a variety of different ways. As is so typical with GBS, the improvement I am seeing is gradual but nevertheless noticeable.

Thank you once again for your commitment in your prayers. I regularly hear of prayers people have prayed off their own backs as it were, which have been answered.

At the weekend some friends approached me to find out whether I have feeling in my feet again yet. I had not known that a family member of theirs had had a milder version of GBS in her 80s, and although she regained full function, the feeling in her feet had never come back. Knowing this, they have been focussing specifically on this in their prayers for me. I was encouraged enough to hear how they have been praying, but i found great joy also in being able to tell them that the feeling in my feet is well on its way back, working its way from the outside (little toe), inwards towards the big toes.

Today I'd like to get über-specific in my request for prayer! Please would you pray for the TA muscle in my core to strengthen? Someone asked me at the weekend what exactly I meant when asking for my core strength to improve, so it occurred to me that others might have the same question. So, using the best of what I was told in hospital I thought I'd try to explain.

Basically the body has layers of muscle and in my torso, the deeper muscles have not yet come fully to life. The TA is one of these and it's muscles like these which hold you upright. The superficial muscles (like the "six pack", obliques etc.) are there to make the body respond. For example, if you are about to fall over to your left, they pull you to the right. In my case, the superficial muscles are busy trying to hold my torso upright, so aren't available to help me balance. This means that seeing my legs and feet heal is only half the picture when it comes to standing and walking; those core muscles are the other half!

Another encouraging story of the last week was to hear of a dear friend who has, like many of you, been praying throughout, and at the beginning of last week felt prompted to begin to pray that I would not be discouraged during this stage. When the update I wrote reached her saying that things are quite difficult, she was able to write to me to tell of how God had been leading her prayers on this direction anyway!

Despite the ups and downs it is so encouraging to know that, even when we don't send and update as often as we'd intend to, that God is leading the prayers of His people!

Thank you, all of you, for continuing to pray. I so appreciate it!

GBS Update Wednesday 29th September

2010-09-29T19:20:00.000+01:00

The recovery at the moment feels, if I'm honest, like a bit of a slog. After a big dip followed by spurts of sharp recovery, we have reached a point of very slow progress. It doesn't even feel like steady progress; it's happening at various speeds ranging from 'very slow' to 'slow' to 'stop'.

When it's the latter, it's as though something, somewhere (the drugs, the GBS, whatever) pushes a big red button, and everything comes grinding to a halt. The pain goes up, energy and mood go down. We've formulated various theories as to why this happens, and tried to prevent it; the drugs timetable is adhered to to the minute, I have regular healthy snacks and my daily timetable is planned so as not to exhaust energy reserves. Still, usually once or twice a week I have a period of time (afternoon, morning, a day or more...) during which it is impossible to flick back into 'normal' mode. I just have to sit and ride it out.

During these times it feels as though I am being held captive by ups and downs I don't understand and can't predict - it can be quite demoralising!

The good news is that 'normal' is getting more and more normal. I am able to get out with the family on shopping trips, go swimming without it affecting plans for the rest of the day.

A lot of the time I feel mentally ready enough to just get on with life again. That isn't true, but it's the way I feel most of the time. Not being able to get back to things can cause frustration.

What I am asking God for is a release. From these dips, and if the drugs are part of their cause (it is likely that they are), from the pain which necessitates them. From the inertia in my legs and ankles, and from the general brain-fog (which is partly drugs, partly not having been in general circulation for half a year). I wonder if you would pray the same prayer with me?

My family are doing so much to accomodate me at home, and make life accessible to me. They are doing such a fantastic job, but it can be hard-going sometimes. Please thank God for them, and pray that they would continue to have grace from God for the road ahead.

Earlier in the week I was listening to this song which I felt reflected the way in which this condition came on in a moment; in the same way, that this period of time, in the context of eternity, even in the context of my whole life, is really only a short moment:

Treasures come and treasures can go in a moment
But Jesus You're eternally mine

You are all that I need
You are all that satisfies me
What can the world offer now?
This is life, this is hope
I am free

I'm made rich through the gospel
I'm made strong in the Lord
Thank You God of salvation
You're my life, You're my hope
Everything

Thank you God, that in the tough moments of life, You satisfy me, making me strong, making me rich.

And thank you to all of you, who have been on this journey with me now for over six months, for your commitment in your praying!

GBS Update Tuesday 22nd September

2010-09-23T21:33:00.002+01:00

Thank you so much, you amazing praying friends, for still being with us even as we approach the half year mark. If we had known back when Luke was taken ill, that we would still be on this journey now it would have seemed both unbelievable and unbearable. Yet here we are, six months down the line living a life that we can even enjoy, hard though it is especially for Luke. The thought that keeps coming to me is that God has known us since before He laid the foundations of the earth, and that even when we were young children ourselves, He knew that this would one day come our way. Therefore we can trust Him as each new day unfolds and know that He gives us all we need to walk with Him in it, however long it takes.

We are settling into a new normal again at home. Luke has walked up the stairs to bed for the last three nights, as opposed to ascending the stairs on his bottom. This is huge progress and feels like a great achievement to him. He also realised yesterday that he has some feeling in his second toe on both feet. There was none before, so his toes are coming back to life! It is important to us to keep reflecting back on how far he has come, as there aren’t so many obvious changes on a daily basis. But he is getting stronger and his fatigue, whilst still there seems to be coming on later in the day, which feels more normal too.

Another change for us all is that after much thought and prayer, Gary will leave Gifford at the end of September. This will be both releasing for him and another new adventure for all of us! We have had many people tell us that they felt this illness would have implications not just for Luke but for each of the family. Gary’s intention is to have a six month break and to reflect on all that has gone on. We hope this will create more time to put into Luke’s recovery and time for one another. It has been a very hard decision to take, but we both have a peace about allowing space for God to reveal the next step in our journey.

So we would be very grateful if you would continue to pray with us for the future which He holds in the palm of His hands:

That Luke would go from strength to strength physically, emotionally and spiritually
That feeling would continue to return to his toes, which will really help with his balance
For his core to strengthen. This is also much needed in order to balance, he still can’t stand up without holding onto something or someone
Another symptom of GBS is profuse sweating, which can come on at the most inopportune moments. Please pray for this to subside as it is very uncomfortable for him
For God to speak clearly to each one of us about the future

We recently came across this quotation from C H Spurgeon, who described prayer as ‘the slender nerve which moves the muscle of Omnipotence.’ An analogy that resonated with us given the nature of GBS!

We are so thankful to Jesus for all that He has done and is doing on this journey. Your prayers have been and continue to be invaluable. Man does not see you as you pray, yet God hears every word and will bless you richly as continue to intercede alongside us.

‘Trust in the Lord and do good. Then you will live safely in the land and prosper. Take delight in the Lord, and he will give you your heart’s desires. Commit everything you do to the Lord. Trust him, and he will help you….. The Lord directs the steps of the godly. He delights in every detail of their lives. Though they stumble, they will never fall, for the Lord holds them by the hand.’ - Psalm 37

With our love and thanks as always

Gary and Debbie

GBS Update Thursday 16th September

2010-09-16T16:28:00.002+01:00

I realise that, through updating you a couple of times a week, it is possible that the big picture as to what I can and can't do, is lost. So today, my aim is to highlight the ways in which I've been healed to date, and the things I am still trusting God for. Some seem fairly insignificant, but be assured: praying for the small, but important, is simply an extension of the big prayers my Mum and Dad asked you to pray all those months ago. We have seen many answers in the past, as you prayed and prayed, and God answered, but we press in for more.

So, working from the head, down:

My hair is growing again! Yes, it seems that my hair (and also my fingernails!) stopped growing during the acute stage of the illness, and then jittered back into action again. I'm pleased to say that my magnificent Hairdresser-Uncle (cue the A-Team music) was able to report normal (yes, normal) hair growth once again. A small, but real victory! (and yes, my fingernails are now growing again too).

The double-vision reported in the early stages has now long since stopped. And so have the aches I used to get during that time. I am now able to use contact lenses as I normally would - my eyes are back to normal!

The trache-scar is healing up well, so well I thought I'd attach a picture of it to show you (only available at the blog). I'm using an emollient cream regularly to help it continue to shrink and fade.

I remember what a labour it was to get my arms moving again, and how I could only perform certain movements from certain angles. I can now say that, thanks to the endless stretches I was put through at the hands of ruthless physio-terrorists, and the weeks of self-propelling in the wheelchair, I have over 95% normal range of movement in my arms. I could do with a bit more strength though.

The same would be true of my hands: the range is there, but the strength isn't. Although sensation almost everywhere else is back to normal, a few numb patches on certain fingers remain, which means my typing is not always accurate and I have to be careful which fingers I let touch a hot cup of tea.

You have all heard more than you needed to about my bowels, so from a digestive point of view all I will say is that things are not yet normal, but very well managed!! My core needs further work to strengthen it - this is not just to be able to hold myself upright, but also to aid with balance.

My legs are increasing in range of movement all the time. I can now use crutches without putting too much weight through the arms, but I do need more strength in the legs to be able to walk more normally. I noticed last night that I gained a new movement, which suggests that the upper legs are at about 85%. The lower legs are probably at about 60%, both in terms of strength and sensation. I'm still wearing the AFO splints for my ankles, which are probably running at about 15% strength and movement, with patchy sensation in the feet. Toes are still completely motionless!

I'm still on a number of painkillers - the combination made my GP's computer do lots of beeping with warnings when she put the prescription through today! She has been able to arrange for me to get prescribed access to the local leisure centre, and we are hoping to be able to change the council's mind over a blue badge for the car, so I can get in and out of the car. At the moments we are having to drop off, then park in a normal space because Guillain Barre Syndrome is not on their list of eligible conditions!

This is certainly a different season to five months ago. There has been much to get used to, but through it all, it has felt like I have been carried through it, as though it could be happening to someone else. I don't think that['s denial, I think it's the protective hand of God! I was listening to this song earlier today and this verse seemed so apt:

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.

Not that I now, forever and always, have this outlook. But, it is my honest testimony that at every stage of this condition, God has been teaching me to say "it is well with my soul". I'm pleased to say that, despite everything, my soul is well! Thank you, God.

With my love, and thanks for walking this journey with me. I thank God for you all.

ZMZYGT9WNYY4

GBS Update Tuesday 14th September

2010-09-14T09:32:00.001+01:00

Today I'd like to ask that you continue to pray for good sleep. I am finding that the moment my head hits the pillow, whether during the day or last thing at night, my mind fills up with thoughts and ideas about the future. I am pleased to be in a place where I can start to think about the future, but perhaps when I'm trying to sleep is not the best time to do it! Of course, I am taking practical steps too.

Physically I am doing well, even though most of the last week has been about adjusting to being home. There has not been much I feel I've had to adjust to mentally, but the many low-energy moments I've had (late starts, long naps, early nights) seem to suggest that there has been some adjustment going on under the surface. Despite this, I seem to be walking faster and handling the stairs more confidently, certainly when coming down.

Obviously all of this is within the home environment; I am getting out of the house at least once a day, but usually the trips are brief, to familiar environments. As I start to venture out again, it would be great to be able to do so reasonably confidently and comfortably, without the physical side effects I have experienced every now and then over the last few weeks.

This afternoon, I am getting back to swimming for the first time since leaving the hospital, and thus the first time without any therapists. It is a small step, I know, but to us it feels rather... auspicious I think is the word! Joel is looking forward to coming with us for the first time, which is great because it means that once he has seen how to help me, we will be able to go just the two of us in future, if we ever have need to. Other exercises are re-starting again this week, too.

At the weekend I had the privilege of re-meeting someone I haven't seen since I was a toddler, who has been praying with us from the very early days. She'll soon be jetting back to Pakistan where I knew she had been asking people to pray for me, thousands of miles away, but until this weekend I never knew just how far the network reaches... apparently at least as far as Islamabad!

What a reminder it was of how God has surrounded us with our own great cloud of witnesses here on earth to encourage us through this trial, to testify of His faithfulness to help us finish the race, just as we all know that in our daily walk we are joining with men and women throughout history who have believed God:

"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God."

That same chapter ends:

"Therefore, since we are receiving a kingdom that cannot be shaken, let us be thankful, and so worship God acceptably with reverence and awe, for our “God is a consuming fire.”"

Let our determination to run this race, egged on by the cloud of witnesses God has provided, lead us straight to Jesus, and to His worship. Whatever the ups and downs, and whatever the future holds, I know it all holds together in Jesus. He is the coherence in this weird and wonderful plan!

GBS Update Friday 10th September

2010-09-10T11:50:00.005+01:00

Since being discharged I've done as much as I can to get used to normal daily living. From doing the polishing in the living room, to short trips to ASDA, I've been getting involved wherever I can. I'm far from being completely independent, but I'm making strides towards it.

I have followed the advice the hospital gave me about initially cutting right back on socialising, before gradually building it back up again bit by bit. I've only met up with one person this week (a big change from before), but it helps that as a family we have lived in the same community in Chandlers Ford for eighteen years, and in the same house for ten of those, so it is almost impossible to venture out to the local shops without at least recognising someone, more usually bumping into someone we know. I have come home to a very secure environment.

The main points I'd appreciate your prayers for over the weekend are:

That my stamina would increase. I really enjoyed catching up with my friend Chris this week (in particular seeing what's going on at The Life Centre, the church's new building), but being in a public place seemed to produce signs of physical strain by the end, and I spent the rest of the day under the duvet! Please pray that I would see progress, so that doing something as simple as having lunch with a mate won't be so physically demanding.
Despite sometimes getting tired, I have noticed a marked improvement in basic things like being able to get up out of chairs, getting up and down the stairs, and speed of walking. Please pray for my ability to do what my old hospital pals called 'activities of daily living'.
Now that I'm beginning to get used to the idea of not having a bed waiting for me in hospital, we're hoping to really focus on exercise. Please pray we would choose the right exercises for the right days, and that my energy levels would be able to meet the demands of the form of exercise we choose.
Finally, please pray for good sleep. I have to wake up at least once each night to take drugs, but on top of that I often end up lying awake for a couple of hours before eventually dropping off, even at my most exhausted.

In highlighting areas for prayer, I find Jesus' words from Matthew 6 so useful in helping me not to cross the line between concern and anxiety:

"Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? ... But seek first the kingdom of God and his righteousness, and all these things will be added to you. Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble."

Let me thank you all again for your amazing stickability in praying for my complete recovery. I don't take it lightly that there are so many people fighting alongside me in spirit. I truly am incredibly grateful.

What is GBS?

2010-09-08T08:00:00.026+01:00

On Friday 26th March 2010 I recognised that I was suffering from some unusual symptoms - my back was aching, my muscles felt drawn and I noticed that I was dragging my feet.

On Saturday 27th I was admitted to hospital, and late into the night on the Sunday I was transferred to an Intensive Care Unit.

The diagnosis was Guillain Barre Syndrome (GBS), and many of you have followed my progress over the months which have passed since then.

But what is Guillain Barre Syndrome?

What GBS isn't:

A sign of a weak immune system. Anyone can develop Guillain Barre, at any time, in response to many possible triggers (and we probably don't know what all of them are yet).
A life-sentence. GBS is a one-off life event. Although it is possible for the same thing to happen to me all over again, that would either mean I have a different condition (such as CIDP), or it would be a second independent event. That means, unlike conditions such as Glandular Fever, one cannot use phrasiology such as "it's my GBS flaring up again".

What GBS is:

Unpredictable. Although there are common symptoms, the extent to which these symptoms set in is variable. And because there aree a number of cousin-conditions, fiagnosis can be tricky, and never absolutely certain until after a number of weeks.

I will be updating this page from time to time, as I find more relevant facts to include.

In the meantime, if you are interested in finding out more...

The GBS Support Group has a useful quick guide.
Wikipedia seems to have collected a more scientific description of the syndrome.
The GBS/CIDP Foundation International also has a useful description.

GBS Update Tuesday 7th September

2010-09-07T08:00:00.174+01:00

In some ways everything has changed; in other ways, nothing has.

Knowing that the safety net of the hospital is no longer there somehow brings a gravity, yet also a freedom. Gravity, in the sense that it is now largely down to me to get on with my exercises and to take charge of my progress. Freedom, in the more obvious sense of not having health professionals (though heroes they may be) breathing down my neck at every hour of the day.

With their last words of advice to me heard and digested (ranging from lectures about the virtues of exercising and the perils of socialising, to encouragements to do 'nothing' for a fortnight), I am hoping to tread a careful, balanced path. Our experience so far would indicate that it is impossible to get it 'right', but that it is often possible to do a good job.

After the busy social calendar I had developed as an in-patient, it feels odd to have space just to 'be', and I think that this is what the more conservative of my hospital advisors had intended me to have during this period.

Having said that, I remain convinced that there is something even more pivotal to my recovery: specifically targeted prayer. For those of you that pray, here are the headlines:

Pain management. As most of you are already aware, my pain is good pain. Whenever and wherever I experience it (usually from the shins, down, but sometimes in the hands) it is a sign not only that stiffness is easing after months of inactivity, but that my nerves are repairing to complete muscle activity and sensation. Please pray that, one way or another, via painkillers or otherwise, I would remain pain-free.
Exercise. I am now aiming to get my heart pumping a few times a week as well as re-strengthening my joints. I cannot tolerate more than 10 minutes of CV work at a time; at the moment I am using a rowing machine at home, but as things improve I will have prescription access to the local gym and pool, so please pray for my tolerance, stamina and strength to increase.


With 5 mins on the rower wearing me out, running a 5k again seems a long way off!

The enormity of what has happened to me seems to be producing an emotional response, which makes the newfound space in daily life so useful. It is becoming apparent that it may take longer than I had hoped to become physically fit enough to resume life as normal; I am wondering whether the same will be true emotionally. It is impossible to know the timings, so I am trying to focus on living each day walking with Jesus.

God has certainly been faithful to my family and I throughout this experience. My Mum reminded me of the line from the hymn Great Is Thy Faithfulness:

"Strength for today, and bright hope for tomorrow"

The picture of manna in the desert from Exodus 16 also feels pertinent:

"Morning by morning they gathered it, each as much as he could eat."

None of us can know how much pain or energy I will have morning by morning, let alone when I will be able to resume my PGCE course, for example. But thankfully, because we have a faithful God, I don't need answers or strength for the long term future, today. All I need today, is strength for today, knowing that, with God, my future is bright. As much as is my need today, He will supply.

Thank you so much for persisting in prayer for me. Having an army of pray-ers who have prayed strategically all the way through this illness has made such a difference, and I know the same will be true for the rest of the journey.

GBS Update Friday 3rd September

2010-09-03T19:46:00.003+01:00

As we reach the end of another week, there is much to look forward to, yet I’m apprehensive about some things too.

My discharge has been brought forward from this Thursday (9th) to today!

As I mentioned on Tuesday, the combined effect of the bank holiday and being allowed an extra day out of hospital to celebrate my Dad’s birthday on Wednesday, meant that I had seven consecutive nights at home. When I got back to hospital yesterday, knowing that it was only for one night and that afterwards I would be back at home for another three, I started to talk to the staff about discharge. We concluded that, seeing as by the end of today we will have ticked all the boxes therapy-wise, why not go before the weekend?

So last night we sent most of my belongings home from hospital, and today (perhaps it will have happened by the time you read this!) I will be sent home with the remainder, and a pile of drugs to last the next month. This, to me, feels like the right move at the right time. Please pray that this weekend would go well, and that the bed at the hospital that is being held for me over the weekend ‘just in case’ wouldn’t be required.

Tremendous as the support I have had from the hospital has been, there will now be left a void, which will be filled by:

• My GP. He’ll be coordinating the facilities I can access, including prescriptions for the local gym and pool, as well as drugs. Please pray for wisdom, particularly in the drug weaning process.
• Some kind physio friends, who have offered to see me every now and then. Thank God for them, that they, like the medics would have wisdom, and that they would be blessed for offering me their help!
• My wonderful family. They have already, as you know, borne huge levels of pressure since the beginning of the year. And now, as I return home, the new pressures they face will be more practical than ever.
• Myself. In receiving the sort of help I’ve had, you become kind of institutionalised. There are some things which are always done for you, and other things which you simply don’t have the opportunity to do in hospital. Now is the point at which I am able to take back more responsibility for my own life, knowing that there isn’t the safety net of hospital to go back to at the end of the weekend.

Although in some ways the decision to go home feels like a practical one, in truth it is a momentous one. Back in April, we had no reason to believe that I would necessarily ever go home again. We could only hope and pray that that God would spare my life. Judes’s words feel like an appropriate response to this grace:

“Now to him who is able to keep you from stumbling and to present you blameless before the presence of his glory with great joy, to the only God, our Saviour, through Jesus Christ our Lord, be glory, majesty, dominion, and authority, before all time and now and forever. Amen"

GBS Update Tuesday 31st August

2010-08-31T16:49:00.000+01:00

It hardly seems possible that in the space of just one week there should be so much change in my physical ability. Don’t get me wrong, the progress is still gradual – appropriately, the logo of the GBS support group is the tortoise – but it seems to us as though God is answering our prayers and bringing acceleration to this gradual healing.

Over the last month I visited two events, where I was proudly telling people how I was now able to use a wheeled zimmer frame to walk. Although still primarily using a wheelchair, it brought me great pleasure to know that I could get up and walk if I wanted to.

Getting up into a standing position is now easier than ever, and I am now using crutches, instead of a zimmer frame, to stand and walk. I’ve spent the week getting used to what feels like a new mode of transport, and by this last weekend it was definitely true to say that the crutches have now displaced the wheelchair as vehicle of choice. I’m using splints (called AFOs) which fit inside my shoes to counter my floppy feet, and these not only help in themselves, but stimulate all sorts of muscles to reintroduce a normal walking pattern.

Last month I went to Winchester Family Church for the first time since getting ill. At that time they prayed that I would soon be able to walk in, rather than be pushed in, in a wheelchair. So it was great to be able to do just that last Sunday – a real, tangible answer to many of your prayers!

Although not yet discharged, I have been staying at home since Thursday. It’s been like a taster of what life-after-discharge will be like, an ideal chance to get around the initial problems of life at home before I get to them. For example, I have already started to use the stairs: going up on my bottom, and down normally, holding on tightly to both sides! This means I’m now sleeping upstairs in my old room at nights. We’re keeping the downstairs bedroom just in case, but it is great to be able to sleep in my own bed again!

During my stay at home, Mum, Dad and I have gone to meet the rehab physiotherapists at the local pool, and back at the Neuro unit’s gym. The team have taken Mum and Dad through how to help me perfect the art of standing, as well as how to access the various disabled facilities at the leisure centre. I think both sessions have given them confidence to help me in a more practical way.

With less than two weeks until discharge, the things I’m praying for are:

• Safety and normality on the stairs
• My floppy feet – that the splints would work and for lots of muscle activation
• My core – essential if I’m to meet my long terms goals of being able to ice skate and ski

I know there will be a day – I pray it is not too far off – that I will smile upon the excited announcement of my use of crutches, just as I now smile upon the enthusiasm I once held for the zimmer frame. Yet I know the fact of my progress at any stage, whether to a gutter frame, zimmer frame, or crutches, brings God glory.

It makes me wonder how our omnipotent Creator views our wordly aspirations, which, at ground zero, appear so massive, targets almost unassailable. As I, in retrospect, smile at goals achieved, so he must smile at this or that target we humans hold, knowing it is more achievable than we on earth realise. It is, I suppose, a function of being human that we too often set our sights too low. I think the important thing is that, wherever our aspirations lie, that we take Him at His word, and believe that He will come through for us – a simple yet deep trust in Jesus. This, if anything, is what I will take away from my experience of Guillain Barre Syndrome.

C.S. Lewis said:

If we consider the unblushing promises of reward and the staggering nature of the rewards promised in the Gospels, it seems that our Lord finds our desires not too strong, but too more weak. We are half-hearted creatures, fooling about with drink and sex and ambition when infinite joy is offered us, like an ignorant child who wants to go on making mud pies in a slum because he cannot imagine what is meant by the offer of a holiday at the sea. We are far too easily pleased.

More than the knowledge that I have a story of ongoing healing, the biggest thing on my horizon is, and I hope will ever be, the knowledge of a relationship with the One who is healing me, day by day.

GBS Update Monday 24th August

2010-08-28T20:26:00.003+01:00

After a week of persevering with walking, and beginning some step work, this weekend I visited ‘Together at Westpoint’, a gathering of Newfrontiers churches in the South and West of the UK. If last week’s visit to Newday was significant mainly because of my previous involvement with the event, this visit was significant because of the people attending the event itself. Over the years I have spent time in three of the twenty or so churches represented, so ‘home’ for me feels more like a region than a town. As churches from across that region gathered, I expected to feel at home.

My friend Guy was hosting the event and has, like many of you, been so faithful in responding to updates day by day, encouraging me to keep going week by week, month by month.

We arrived partway through the Friday night meeting. I knew, as we entered the room, that here were hundreds of people who have supported me in prayer, even in the darkest days when it looked like my very life was on the line. Although I expected to see hundreds of familiar faces, I wasn’t ready for the whirlwind of greetings and welcome that followed. You are an amazing crowd!

One of the key ways in which God has impacted me since the beginning of this illness, is the beauty of the Church as it rallies around those in need. It’s the sort of beauty that has inspired me to give up years of my life to serve the Church in the past, and that beauty appears all the more radiant throughout an experience like this. It is an amazing thing to know the prayers of God’s Church behind you – still more amazing to have the privilege of tangibly seeing and hearing their support, as I did this weekend. I’m so thankful for the experience – it really spurs me on to keep persevering.

The weekend helped me to see afresh a picture bigger than just my own life, a picture in which not I, but Jesus is the central figure. How amazing that I fit into that picture; God’s picture. I found one of the songs sung this weekend (by Matt Giles) so helpful in reminding me of this:

I was a stranger to the promise of God, but I was purchased through the blood of His Son.
It is a work not of my own, so that I should never boast.

I see the gospel is much bigger than me, more than a rescue plan to help in my need.
It is a plan for all of time, to unite all things in Christ:

For Your glory, I’m saved to the praise of Your glory;
Jesus, for Your glory, I’m saved by the grace for Your glory.

(Full song available to download here)

I was tremendously blessed by the weekend – encouraged and strengthened for the road ahead through the worship and the preaching. A particular highlight for me was meeting or hearing of children who have been full of persistence and faith in their prayers for my recovery. They are an inspiration!

So I start this week fresh with faith and enthusiasm to tackle the road immediately ahead:

• With just over two weeks until discharge from hospital, we’ll be doing lots of work on walking and steps – please pray for strength and continued nerve repair.
• On Wednesday we have another Goal Planning Meeting with the hospital staff. Please pray for appropriate goals to be set for my final stint as an in-patient.
• On Friday Mum and Dad will be joining myself and some therapists at the local pool. The aim is to enable me to confidently access the pool after discharge. I have found swimming to be a really helpful form of therapy and exercise, so I’m keen that it goes well this week so I can get swimming in my own time.

I am thankful for a week during which progress appears to have been rapid, sandwiched between two weekends which have in themselves been such a tremendous blessing.

I’m also thankful for you, the people who are praying with us for all these things. Some of you I have never met, yet we are all connected in God’s big picture. In your standing with us you are bringing Him glory!

GBS Update: Wednesday 18th August 2010

2010-08-18T10:00:00.000+01:00

As you know last weekend I had the opportunity to visit Newday, a conference I have been involved in for many years and an event which is very close to my heart. The plan was to arrive at the hotel just over the road from the showground on Friday afternoon, spend Saturday on site and Sunday travelling home. We arrived in good enough time to make it to part of the Friday evening meeting, which was quite an emotional experience!

As we were getting out of the car and taking our place in the Big Top, the song being sung was one that has helped me so much through this journey, and which I have quoted here before:

‘Oh no, You never let go

Through the calm and through the storm

Oh no, You never let go

In every high and every low

Oh no, You never let go

Lord, You never let go of me’

The fact that the two following songs were ones which have been equally as meaningful to me, ‘Amazing Grace’ and:

‘You alone can rescue, You alone can save

You alone can lift us from the grave

You came down to find us, led us out of death

To You alone belongs the highest praise’

was just overwhelming, and as friend after friend came to greet me, crying as many tears as me, I was made all the more grateful for this special event and the amazing people who run it.

Grateful and almost unbelieving of the fact that despite everything, I was able to be present and worship God with the thousands of teenagers I’ve had the privilege of serving since Newday started in 2004. There have been many points along the way at which it has looked like it wouldn’t be possible to get there, but by the grace of God I made it!

So I’ve begun the week on a high, and the things I’m looking to progress this week are:

• Walking. It has come on leaps and bounds recently, and now I’m beginning to pick up speed towards a normal walking pace. I’ll need more ankle control so my walking looks less Andy Pandy like!

• Steps and stairs. I haven’t started to look at these with the physios yet (although I had a go at the odd kerb at the weekend) but I’m keen to, so that I’m good enough to have a go at home in the next few weeks.

• Swimming last week went really well and so we’re now trying to arrange a pool session with both physios and Mum, Dad and Joel soon, so that it’s possible for me to access the local pool with them. It’s great fun and great exercise so I’d love to get this going soon.

In all of this I want to know God with me, guiding me as normality is edging ever closer! I’d value your prayers in all of these things in the next week – I do not take them for granted but am mindful of the effectiveness of your prayers so far.

Thank you, as always, for your amazing support

With love

Luke x

GBS Update: Friday 13th August 2010

2010-08-13T10:00:00.000+01:00

We just wanted to send a brief update today, specifically to ask for prayer as we embark on another new venture with Luke this weekend. One of his major goals has been to visit Newday, a large youth event that Luke has worked at each year since he was at University in Sheffield. He has a great affection for the Newday, which draws thousands of young people from across the country, raising up a generation who love God, and it has been a big part of his life. So he has been very keen to visit, even just for a day and so we will be travelling up to Norfolk today. His doctors and therapists have agreed to the visit on the understanding that we travel up today, then Luke can rest, visit Newday tomorrow and then stay a further night before travelling home on Sunday. It will be a full on weekend, and we would so much value your prayers for

1 Safe travel and protection over Luke as he makes further steps into real life. The journey will be very tiring, please pray that he will recover well and be able to enjoy his time there

2 This will be the first time Luke has stayed anywhere other than hospital or home. Please pray that God will have His hand on us as we stay at the hotel, and that Luke will rest well and be comfortable in unfamiliar surroundings. Also that we will remember his drugs at the right time and not get distracted by being out and about!

3 That this time would prove to be a blessing and not a frustration, as he sees others doing the jobs he used to do

4 Luke has a peace about being where God has him for the time being. Please pray with us that that will continue and that Luke will keep looking in faith to the God who made him and loves him and has the very best in store for him

Thank you again for continuing to be with us and for us. We do not take lightly the fact that we keep coming to you for prayer, as each of your lives is so busy and full already. We know it is a mystery how God chooses to work through the prayers of the Church, but our journey so far is a testament to your faithful prayers and to the gracious faithfulness of our Father God, who longs for relationship with the people He created.

‘As for God, his way is perfect; the word of the LORD is flawless. He is a shield for all who take refuge in Him. For who is God besides the LORD? And who is the Rock except our God? It is God who arms me with strength and makes my way perfect. He makes my feet like the feet of a deer; He enables me to stand on the heights. He trains my hands for battle; my arms can bend a bow of bronze. You give me Your shield of victory, and Your right hand sustains me; You stoop down to make me great. You broaden the path beneath me, so that my ankles do not turn.’ Psalm 18: 30-36

With much love and many thanks

Gary and Debbie

GBS Update: Wednesday 11th August 2010

2010-08-11T10:00:00.000+01:00

The last couple of weeks have felt relatively quiet; it has felt as though I have had the opportunity to focus more on therapy and exercise. Obviously there is still a fair distance to go and I am beginning to get an idea of what to expect in the months ahead:

1 Sensation and movement should increase in my hands and feet bit by bit

2 The trache wound, which is no longer open, but has scarred over, should begin to fade

3 My walking, which I am told is getting better all the time, should improve to the extent that I’m able to walk without an aid by this time next month, when I’m discharged from hospital (albeit still walking like a thunderbird!)

4 I’m to expect to tire and fatigue easily for at least a year to come

Whilst I find it really useful to know where I’m going, it would be amazing to see deeper and faster improvements. Specifically, in order for my standing and walking to improve, my core muscles need to activate and strengthen. We are devoting a big proportion of my therapy time to this and there is every reason to expect improvements quickly.

I am also doing everything I can to manage fatigue. Big meals, extra snacks, fortified nutrition drinks and sleeping when necessary are all helping, but it is an imprecise art, and sometimes all that can be done is for me to adjust my expectations and plans to fit in with my energy levels. This is a big concern for the future and I would value your prayers.

On the other hand, today I am going swimming with the therapists and my new roommate Connor, and tomorrow we are off to a local ice cream parlour, so maybe it’s not so surprising I’m getting tired!

As the discharge date approaches, so does a sense of apprehension. The hospital has been my home for many months and there are some things I’m eager to be able to do before I get the boot. Please pray that progress will be such that I can have peace about returning home.

Over the last few days I’ve been reminded of some verses I learnt in childhood: ‘Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before Him endured the cross, scorning its shame, and sat down at the right hand of the throne of God.’ Hebrews 12:1-2

Throughout this journey I have experienced tangibly the great cloud of witnesses God has surrounded us with. I’ve been learning more about fixing my eyes on Jesus day to day.

Most of all, please pray that I would fix my eyes on Him more and more.

With my love and thanks as always

Luke x

GBS Update: Tuesday 10th August 2010

2010-08-10T10:00:00.000+01:00

We are so grateful for your prayers for us over the weekend and for your amazing staying power! When we arrived back yesterday, Luke was tired but everyone had enjoyed a very happy weekend at home with family – and we had a wonderful weekend in Jersey. We don’t know why, but when we arrived we were told our room had been upgraded to the Penthouse suite, which was beyond anything we could have imagined, overlooking the bay. We had booked a standard room (and that is what we paid for!) and checked twice with reception that they hadn’t made a mistake, and they assured us they hadn’t. We are in awe of a God who has known every step of our journey and knows us better than we know ourselves - and blesses us far beyond anything we deserve.

As we enter our 20th week of hospital life, please continue to come with us in prayer to the only One in the world who is totally faithful, steadfast and true to His word – and He has promised to work together all things for the good of those who love Him.

1 It is one month today until Luke is due to be discharged from the hospital. Whilst in many ways we can’t wait, he does have apprehensions after what will be almost half a year in hospital. Please pray that God will be preparing him for coming home permanently, and that therapy once out of hospital will continue. He has been told that it is poor in the area in which we live but Luke knows that if he is to continue to recover well, continued Physio and OT will be vital

2 Please pray for strength and stamina continuously for Luke. He can do well for several days, but still has days when he is overcome with fatigue. God has brought about such amazing recovery for him so far, so please pray with us for God to continue to pour out His healing power on him

3 Please ask that when Luke’s body is worn and weary, that he will know God leading him beside still waters and restoring his soul

When we woke on Friday morning to the amazing views of the sea, the words of this song were ringing in my mind

I stand amazed when I realise

Your love for me is beyond all measure.

Lord, I can’t deny

Your love for me is great.

It’s as high, high as the heavens above,

Such is the depth of Your love

Toward those who fear You.

O Lord, far as the east is from west,

You have removed my transgressions.

You make my life brand new:

Father, I love You.

Even when our world is turned upside down, God’s love for us and His faithfulness to us remain, and our hearts desire is that He will be honoured through every circumstance of our lives

With much love and many thanks

Gary and Debbie

GBS Update: Wednesday 4th August 2010

2010-08-04T10:00:00.000+01:00

After 5 days of walking with the gutter frame, Luke was given a normal zimmer frame to replace it. This is because his walking has come on so well, and the physios felt he no longer needed the extra support of the gutter frame. Whilst he is still using the wheel chair for most moving around, he walks to the toilet using the zimmer, and to the lift when he is going to physio. He also uses the zimmer to transfer to the wheelchair rather than a banana board, and we are hoping to have a trial run, transferring into the car using the zimmer instead of the banana board. The physios are amazed at the pace of his improvement in walking, and we just stand in awe at the faithfulness of God and his Father heart towards us. It has been a long journey, but we are so thankful that Luke is recovering and that every day we see the impact of God’s hand on Luke’s life.

His aunt and uncle and cousins are coming to stay today for the weekend and Luke will be coming home to be with them and his brothers. This will be another step towards ‘normal’ life, as the lads have spent a lot of time with their cousins over the years, so it will be like old times and it is something he is very much looking forward to. Gary and I are having three days away which we are very much looking forward to, but will seem odd after being at the hospital every day since March 28th! Life has not been at all what we expected when we entered the New Year, yet here we are in August with so much to be thankful for, and a new normal life enfolding before us, at least for the time being. When you spend a lot of time in hospital you see how much pain and sickness there is in our world, and our hearts overflow with gratitude to a God who holds us through it all and intervenes when we call on Him.

Thank you for running this race alongside us. Your prayers have been so effective, and we continue to need the hand of God on us, so please pray with us

1 For Luke’s ability to walk to go from strength to strength. Please pray that God would protect him from falling or any setbacks, especially whilst we are away

2 For his trache wound to heal. It is looking better, but the tissue viability people saw him yesterday, and are continuing to treat it as it is not yet fully healed

3 That pain relief would be at the right level and for wisdom for the doctors in working that out for him. His pain has increased recently, and we are seeing the impact of it being ‘good pain’ in his increasing recovery, but it is painful for him!

4 That God would be preparing all of us for Luke’s return home. That the new, albeit temporary, life enfolding before us would work well for all of us, and that we would be a blessing to each other

5 For this weekend to be a time of rest and relaxation for all of us. That God would speak to us about the future He has for each one of us, that we would recognise His still, small voice

‘For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. 14 I will be found by you," declares the LORD’ Jeremiah 29:11-13

With much love and grateful thanks

Gary and Debbie

GBS Update: Monday 2nd August 2010

2010-08-02T10:00:00.000+01:00

Last week was a week of two halves for me. We started the week discussing the fact that it was likely to take me at least six weeks to learn to walk. By Friday I was walking to and from my bedroom and the gym using a gutter frame! I am so excited and pleased to be able to use my legs for the first time. THANK YOU once again for all your prayers and support on this journey so far – I am utterly convinced that without them I wouldn’t be at this point.

When I told my physio that it had been exactly four months from the point of losing the ability to walk, to regaining it, she reminded me again of just how extraordinarily quick a recovery this has been, despite how long it may have felt along the way. Without factoring in the extent to which I became ill along the way, to have GBS and to have only four months without walking is impressive.

If it sounds as if I’m boasting, it’s because I am! I don’t pretend this has anything to do with me; I believe ultimately God has heard the prayers of many people, and shown us all what He can do. At every stage, whether getting worse or better, I have always felt that this has been happening TO me, and all I can do is sit back (or lie back!), join in with your prayers, and see what happens.

It really has been quite remarkable so far – but it’s not over yet! In fact, as we have turned the corner into what feels like it might be the home straight, so another stage is just beginning, which will lead me back into ‘normal’ life, and whatever the future holds for me. With this in mind, please focus your prayers along these lines over the coming days:

Having been ventilated for over two months, I am left with a small wound, which is having trouble healing. The trusty old ventilator was finally turned off seven weeks ago today; a tracheostomy wound normally heals up in about two. It’s not at all painful, but the sooner it heals the quicker I’m free from another possible source of infection (infections and GBS don’t go well together!).

The goals which were set last Monday – to be reached over the coming month or so – were all met by Wednesday (except one), thanks to this sudden spurt of progress. Many of the new goals will now become quite scary, like standing up in the shower. It seems incredible that we are already at that point, and that such simple tasks should look to me like such a big mountain to climb.

In the run up to this sudden burst of progress I was experiencing more and more pain. It was ‘good’ nerve-repair type pain, but if it continues I may have to request more painkillers. My doctor seems fairly relaxed about how quickly I come off the drugs, but I am keen not to need them. We need the nerves to fully repair themselves as soon as possible so that the pain stops and I can be drug free.

In the last four months many people have sent us passages of the Bible to read and be encouraged by. One passage particularly caught my eye when a church in Pakistan sent me a card – someone wrote “Psalm 30 – read every day!” – so I am, and every time I read it, the words become my own:

I will exalt you, Lord, for you rescued me.

You refused to let my enemies triumph over me.

O Lord my God, I cried to you for help, and you restored my health.

You brought me up from the grave, O Lord.

You kept me from falling into the pit of death.

Sing to the Lord, all you godly ones! Praise his holy name.

For his anger lasts only a moment, but his favour lasts a lifetime!

Weeping may last through the night, but joy comes with the morning.

When I was prosperous, I said, “Nothing can stop me now!”

Your favour, O Lord, made me as secure as a mountain.

Then you turned away from me, and I was shattered.

I cried out to you, O Lord.

I begged the Lord for mercy, saying,

“What will you gain if I die, if I sink into the grave?

Can my dust praise you? Can it tell of your faithfulness?

Hear me, Lord, and have mercy on me.

Help me, O Lord.”

You have turned my mourning into joyful dancing. You have taken away my clothes of mourning and clothed me with joy, that I might sing praises to you and not be silent. O Lord my God, I will give you thanks forever!

With love and my renewed thanks for standing with me,

Luke x

GBS Updates: Wednesday 28th July 2010

2010-07-28T10:00:00.000+01:00

Thank you once again for all your support and prayers especially for the Goal Planning Meeting which took place on Monday. It seems that Luke is making good progress in lots of areas. He is managing much of his own care and strength is returning throughout his body. It was agreed, however, that his discharge date be put back to mid September. This is because the team are keen that Luke walks out of rehab, rather than being pushed in a wheelchair. We are told that the longer he is in rehab, the shorter will be his recovery time overall. This is because once he comes home, therapy will be reduced significantly, and therefore his predicted rehabilitation will be prolonged.

With this in mind, they are keen to get him moving and are intending to help him to try to take his first steps today. This will be with the use of a gutter frame – which is very similar to a zimmer frame. So please come with us in prayer to the God who created Luke and has only the best in mind for him – and for us

1 Please pray that Luke will be able to take his first steps today. He cannot stand for very long, as his legs give way after a few minutes. Please pray for strength to return and that his legs will once again start to function as God intended

2 Luke seems quite at peace about his delayed discharge date, please pray that he will continue to see that God’s timing is perfect and that he can trust it is the very best for him

3 That God will continue to pour out his healing on Luke – body, mind and spirit and that in the busy-ness of hospital life Luke will find rest in Jesus

It seems odd in some ways, after all that Luke has been through that we as parents should find this season quite a hard one to walk. He is so well in many ways, and his life no longer depends on a machine to keep him alive, and yet there is something about seeing your strong, grown man son struggle with everyday tasks and there is very little you can do. Whilst we are made in the image of God, it is good to be reminded that we are not God! Therefore, we are limited in our understanding and needful of the One who sees the bigger picture. And this is what God always intended for all of us – a relationship where we lean and depend on Him.

Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.” Matthew 11:28-30

With our love and grateful thanks for continuing with us

Gary and Debbie

GBS Update: Monday 26th July 2010

2010-07-26T10:00:00.000+01:00

From Luke

The weekend before last I had a fantastic and busy Saturday followed by a Sunday in bed; similarly, after an overwhelming time last Tuesday evening celebrating the work of my well-loved music teacher, I spent all day Wednesday sleeping. I’ve realised that I need to spend at least as much time in bed when I’m at home as I do when I’m in hospital!

So this weekend, after a fairly sleepy Saturday, I was really pleased to have enough energy to join my friends and family at Winchester Family Church – the church which has been home for the Wood family for thirteen years, and which has supported us all so vigorously in prayer and so persistently in many other ways over the last months.

It was surprising, and yet so typical of their generous spirit to welcome me as they did. As the applause went on, and then on some more, it was amazingly moving to look around and to see the smiling faces of just some of those who have continued to knock on heaven’s door at every little step along this journey. Whether asking God to preserve my life when it was in immediate danger, or simply thanking God for the smallest finger movement, these people – replicated many times over across the world, I know – have been faithful in prayer. They have simply not let go! And yesterday, typically, they didn’t let the occasion pass without another burst of prayer for myself and Ray Stannard. This week, as this remarkable bout of prayer continues, I would be so grateful if you were to join with me in pressing in for the following things in particular:

• Today’s ‘Goal Planning Meeting’, when Mum, Dad and I will meet with representatives of all the professionals involved in my care. It’s possible that the discharge date (currently 26th August) may be changed. I don’t mind when I’m discharged; I’d rather be walking out of hospital than being pushed in a chair! Please pray for wisdom for everyone involved. • On Saturday night I realised I was moving my right foot independently! It’s proof that the nerves are repairing themselves slowly but surely. Please pray for more nerve repair, and improved muscle strength to follow. • Improved energy levels and stamina – vital in order to help me participate fully in the therapy programme, aimed at getting me standing, then walking, independently. • That God would continue to speak to me day by day, that my spirit would be nourished, and that I would continue to know the joy of following Him on this journey, even when physically I’m not going very far!

I was struck yesterday by the faithfulness of a God who sees the end from the beginning, who allows trials into our lives but never leaves us or turns away from us. In the words of a song which I would often silently ‘sing’ along to when I was in ICU:

God of unbroken promises, always You keep Your word

Glory, grace and holiness forever to endure

You never turn or change, You never break the faith

Yesterday, today and always

Through it all You are faithful, through it all You are strong

As we walk through the shadows, still You shine on

You are faithful, Jesus You are faithful to the end

It’s not the end yet, but I have known Jesus’ faithfulness to me personally on this journey so far, and I know I can trust Him to see me through right to the very end.

With my love and thanks as always,

Luke x

GBS Update: Friday 21st July 2010

2010-07-23T10:00:00.000+01:00

And so we head into another weekend. Luke comes home again tomorrow overnight, which we very much look forward to. He has had a week of experiencing life again outside of hospital which has been so fantastic for him – first the concert on Tues day evening and then last evening Gary pushed him down to the home of his friends who live just across the road from the hospital. Luke lived with them before moving home to complete his PGCE, so to get down to their house and see them was great for him!

So there has been significant progress this week in him getting out and about, for which we thank God. There has, however, been less progress in terms of Luke’s actual body mobility and he was concerned last night that his discharge date planned for the end of August may be put back as he is still unable to stand for any length of time, or take any steps.

So maybe this weekend you would join with us in praying to the One who knows all things, sees all things, holds us and can be trusted with our future

1 For significant improvement in Luke’s ability to stand and take actual footsteps – things that seem so basic to us normally, but have huge importance in Luke’s life right now

2 We have the next Group Planning Meeting on Monday afternoon, where Luke’s progress will be reviewed and new goals set. Please pray for wisdom for all involved and that the goals set will be achievable and realistic

3 That the weekend at home will go well and that together we will pace it so that Luke does not overtire. He slept all day Wednesday after his evening out on Tuesday – activities we take in our stride are enormously stretching for him and he needs to build stamina and strength slowly it would seem

Who taught the sun where to stand in the morning

Who told the ocean you can only come this far?

Who showed the moon where to hide 'til evening

Whose words alone can catch a falling star?

Well I know my Redeemer lives

I know my Redeemer lives

All of creation testifies

This life within me cries

I know my Redeemer lives

The very same God that spins things in orbit

He runs to the weary, the worn and the weak

And the same gentle hands that hold me when I'm broken

They conquered death to bring me victory

Now I know my Redeemer lives

I know my Redeemer lives

Let all creation testify

Let this life within me cry

I know my Redeemer, He lives

Seeing the bigger picture of a God who created us and knows us tenderly, as this song describes, helps us as days turn into weeks and months. We know that nothing will be wasted from this experience and that it is a privilege to walk this path with our constant faithful God

With love and thanks for continuing with us

Gary and Debbie

GBS Update: Wednesday 21st July 2010

2010-07-21T10:00:00.000+01:00

Last evening was a very special one especially for Luke, but actually for all of us. A few months ago we were invited to the retirement concert of Luke’s very dear music teacher. At that time Luke was still on ICU, but immediately wanted us to book tickets and so very tentatively, we asked the school to reserve three seats. This evening became his first long term rehab goal and Luke was determined to be there if he was well enough – and he made it! It was a really wonderful evening especially for him to see Mr Stannard and so many old friends. We too were so heartened by meeting old friends, many of whom we haven’t seen for many years, but they have prayed alongside us since the end of March. We also met people we don’t even know, who spoke to us telling us they have been praying. What an awesome God we have, we can’t describe our gratitude! It was the first night out for all of us since Luke was first taken ill, and one we will remember for a very long time. We thought that we would start from this week, sending out an update three times a week. We have been and continue to be so grateful for all your love, support and prayers, and last night was evidence of the effect of them. Luke’s healing has been rapid for GBS, but even though he has come such a long way, in many ways he still has a long way to go and we need the healing hand of our Father God as much today as we did at the outset, which is why we will continue to update and ask you to pray. Please continue with us, we don’t want to overload you, but do want to seek God’s face every step of the way.

So come with us to the God who longs for intimate relationship with the people He created

1 To thank Him for His evident healing work in Luke, and that after many months of ill health he was well enough not only to attend last night but also to enjoy the whole evening

2 To ask for energy for Luke, he was very tired yesterday morning and didn’t get up until after lunch. Please pray that he won’t be overtired today

3 Please continue to pray for movement in his feet and for overall body strength. The OT told me yesterday that sensation in his hands is returning well, but they are still very weak – as is a lot of his body. But, it is only a few weeks since he was unable to breathe by himself even, so let’s pray in faith for an increase in general strength for Luke

4 For God to continue to speak to Luke about his future. We know God has plans for each of our lives, please pray that Luke will know His guidance for the next season

‘Listen to my cry for help, my King and my God, for to You I pray. In the morning, O LORD, You hear my voice; in the morning I lay my requests before You and wait in expectation........ let all who take refuge in You be glad; let them ever sing for joy. Spread Your protection over them, that those who love Your name may rejoice in You. For surely, O LORD, You bless the righteous; You surround them with Your favour as with a shield.’ Psalm 5

David, who wrote this Psalm was a fallible man just like us, yet he knew that in spite of his failings God loved him. Knowing God’s heart for him, he could cry out to God every day and wait in expectation that God would answer. And it is the same for us now

With much love and many thanks

Gary and Debbie

GBS Update: Monday 19th July 2010

2010-07-19T10:00:00.000+01:00

We just wanted to start by thanking you for remaining with us in prayer, on a journey that will take time and effort, yet one which we hope will honour God, both in the day to day living of it, and in its final outcome. We appreciate very much those who keep in touch and encourage us still – Luke is doing so well, but some days we wake up tired and I think today is one of those days!

We had a really lovely weekend with Luke at home. He had a very busy Saturday and a very sleepy Sunday. On Saturday he saw family from Sussex and went to an old school friend’s surprise birthday gathering in the afternoon. I think it felt a bit odd being taken and collected by his parents at the age of 25, but he suffered it with grace!! The bedroom in the dining room worked well for him. On Sunday he was very tired, and spent a lot of the day resting. Pacing is proving to be very important, and being at home requires a significant amount more effort for him. We took Luke back to the hospital at about 9pm yesterday and are grateful for the care available to us in the NHS. It is something we take for granted, but when we reflect on the total package Luke has received and continues to receive to help him on his journey to recovery, we are so thankful. So as we embark on another week, please join us in praying to the Father who cares beyond measure

1 For Sustenance, grace and energy for the week ahead. Luke has a full week planned, with Physio, OT, visitors and even a trip out. All things that we just embrace and get on with when we are well, but now all these things are so totally absorbing for him.

2 For strength to continue to return, and that Luke won’t be hindered by increasing activity but actually that he will thrive

‘As a father has compassion on his children, so the LORD has compassion on those who fear Him; for He knows how we are formed, He remembers that we are dust. As for man, his days are like grass, he flourishes like a flower of the field; the wind blows over it and it is gone, and its place remembers it no more. But from everlasting to everlasting the LORD's love is with those who fear Him, and His righteousness with their children's children...’ Psalm 103:13-17

We know that as we continue to look to Jesus He strengthens us and gives us grace enough for today. His ways are not our ways, and though sometimes our journey is bumpy He is with us every step.

With our love and thanks

Gary and Debbie

GBS Update: Friday 16th July 2010

2010-07-16T10:00:00.000+01:00

It was Luke’s intention yesterday to write an update before the weekend, but he ran out of time – it’s a busy life in rehab! So he jotted down a few pointers for me to pass on, so here goes.....It’s been a busy week and one where he has seen much progress

• He enjoyed the trip to the Otter and Owl Sanctuary on Wednesday. He said it was great to be out in the big wide world....and to be mugged of his map by a hungry deer!

• He stood up 6 times yesterday

• This weekend it is 16 weeks since he was admitted to hospital and 112 days since he first showed symptoms

• Yesterday he was able to lift each leg, one by one, up off the bed to an angle of about 90 degrees!

• He is coming home tomorrow for an overnight stay from Saturday to Sunday

• He has met all of his short term goals ahead of time, and so new ones are being set

All of these are to be celebrated and we thank God for the healing He is pouring out on Luke. Luke has also given us a few pointers for prayer over the weekend, so please join with us in praying

• For his overnight stay at home tomorrow. We will be collecting him in the morning and he hopes to stay until Sunday evening. We have made the dining room into a bedroom. Please pray that it will be a really enjoyable time for Luke, that it won’t all feel like hard work, but that coming home to stay will feel as normal as it can be

• For continued energy enough for physio etc. He has felt the power of your prayers recently in having much more energy

• He’s meeting with his PGCE leader today at the hospital. She has kindly offered to come and chat through his options etc. Please pray for wisdom as he starts to think about the way forward, that his decisions would be God’s decisions And Luke has asked us to pass on his thanks to you

‘Thank you for 16 weeks worth of prayer and support – I am so grateful and am making so much progress!’

Lord, I’m grateful amazed at what You’ve done

My finest efforts are filthy rags

But I’m made righteous by trusting in the Son

I have God’s riches at Christ’s expense!

‘Cause it’s grace! There’s nothing I can do

To make You love me more, to make You love me less than You do

And by faith I’m standing on this Stone

Of Christ and Christ alone

Your righteousness is all that I need ‘Cause it’s grace!

This song was coming to mind this morning and really sums up the gratitude we feel to an awesome God, who delights in us and

loves us unceasingly. Who is there like Him?

With our love

Gary and Debbie

GBS Update: Wednesday 14th July 2010

2010-07-14T10:00:00.000+01:00

We are so grateful to all of you and your many prayers over the last day especially, and to a God who hears and responds to the heartfelt cries of His people. Yesterday was a much better day for Luke, and he commented several times on how much energy he had, despite having a very busy day. It remains a mystery to us and yet we are so thankful that God has decided to interact with the people He created, and that He wants to communicate with us in prayer. The bible tells us to pray in every circumstance and that our prayers are powerful and effective. And we feel the effect of your partnering with us in prayer every day, so thank you from our hearts for persevering with us.

Luke’s day was full yesterday and included making an apple crumble to share with us at suppertime. The physio told him that despite him thinking he has no movement in his feet he does have some flexion in his ankles, which is needed for him to be able to take his first steps. This was very encouraging for him and he was able to stand alone with the standing machine for a while too. Today Luke is going with two other rehab patients on a trip in the minibus to the Otter and Owl sanctuary in the New Forest. He was joking that it felt a bit like a school trip!

Please pray today 1 For strength and courage and patience daily for Luke as God brings his body back to life

2 For the myelin sheaths on his nerves throughout his body, to grow back at an ever increasing rate which will lead to increasing movement

3 For the ability to stand and to start to take steps

4 For Luke to continue to know God hearing him and speaking to him

I was looking back at some journaling I did a few months ago, and thinking about the fact that suffering is a necessary part of our spiritual development.

‘For God called you to do good even if it means suffering, just as Christ suffered for you. He is your example, and you must follow in his steps.’ 1 Peter 2:21

God says we are to glory in, not endure suffering and tribulation. ‘....I’ll glory in my weakness, that I might know Your strength...’ We live in a world where we try to be as pain and trouble free as possible, yet there is something about pain, both physical and emotional that makes us realise how weak we are and how much we need the God who created us. Nothing comes into our lives, that hasn’t already passed through the hands of our heavenly Father, NOTHING. Therefore rather than gritting our teeth and getting on with it, we can face it with Him in all our weakness, and glory in His presence with us as he helps us day by day.

With much love and many thanks

Gary and Debbie

GBS Update: Tuesday 13th July 2010

2010-07-13T10:00:00.000+01:00

After visiting home on three consecutive days, Luke returned to rehab last night very tired. He had enjoyed seeing relatives from Australia yesterday lunchtime and family from Sussex in the afternoon and being able to come home and spend some time enjoying ‘normal’ life is a great blessing for him and us. It is not without its difficulties however.

In starting to embrace real life, Luke is able to glimpse a future outside of hospital. But the downside is that it also highlights for him just how far off normal life he is, and he lives with the frustrations of a body that won’t yet function in the way it used to, in his home environment where he has always just got on with life. He has made such amazing progress, yet there are days when it still feels like we are climbing Mount Everest. This process of course, is hardest for Luke, yet also for us as his family it is hard to stand by and watch everything requiring huge amounts of effort and energy for him and if we could we would take it all away and make it all better.

But we know that God has allowed this to come into our lives out of His passionate and compassionate heart towards each one of us. God is good ALL the time, which means He would never allow a trial out of spite, but always out of His unfailing love to help us and grow us. Therefore, though the battle continues we continue to trust our Father, who at the right time will complete His healing work in our son and also the work He is doing in us.

‘ I come into Your presence

With nothing in my hands

I only bring thanksgiving

For Jesus, God and Man

I cast myself on mercy

I cast myself on love

I trust Your gracious promise

To wash me with Your blood

Jesus my only hope, my only plea

My righteousness, my Great High Priest

Who intercedes for me before the throne

Jesus, I trust in You alone’

We sang this on Sunday at Church and it was ringing in my head as I woke this morning. We cannot bring anything to the table except trust in the One who can and does heal today. Please join us in praying for more healing for Luke, especially in his ankles and feet; he still cannot move them at all. We are so grateful to you and especially to Jesus for all your care, support and especially for your prayers. He hears every one of them.

With our love

Gary and Debbie

GBS Update: Monday 12th July 2010

2010-07-12T10:00:00.000+01:00

A message from Luke – and a photo of his visit home at the weekend, with his brothers Joel on the left and Ben on the right.

Due to technical failures we didn't manage to get an update out on Friday morning, so I decided to try to type an email update on my laptop for the first time since I first got ill. Let's see how it goes...

Last week Mum had some photos developed. There were some from the early days when I was well and truly ensconced in the Hallamshire hospital in Sheffield – at that time with no possibility of a transfer back to Southampton. It was quite an emotional reminder of just how ill I have been, of the journey I have travelled, and of how much longer this road could have been without your prayers being heard by a loving God. Thank you so much.

These days the problems I'm facing are less deadly but feel just as serious - they are all part of the same GBS journey! I thought today, rather than listing prayer points, I'd share some of the things that are on my mind, and ask you to pray as you feel led for some or all of these things.

I was feeling very tired and sluggish towards the end of last week, not helped I suppose by the glorious weather we’ve been enjoying. When you’re outside it’s great (I’ve managed a couple of hours at home with the family in the sunshine recently), but being stuck, as I generally am, in a bed on a very warm ward it’s not surprising that I’ve been drifting off! After getting out and about for a while I was already much brighter, so I think keeping the visits home short and regular will be important in the coming days.

It has also been recognised by the hospital staff that I have been expending more and more energy but not increasing my energy intake. They have put me on a couple of energy drinks which should help to supplement three full meals a day (plus snacks) which don’t seem to be enough to sustain me at the moment.

I need more energy both to be able to enjoy life in the form it takes at the moment and to be able to throw myself into the therapy programme lined up for me. The team are excellent and seem to be confident that it won’t be too long before I’m able to stand with just the assistance of people rather than a machine, but exercising all the relevant muscles takes its share of energy out of my system!

Often, low energy is accompanied by low mood. I think this is all part of the recovery process, but I’m simply wary of crossing the line between healthy acknowledgement of how hard this has been at times and wallowing in self pity! Predictably, seeing the photos of myself at various stages during the recovery process (not least those of me whilst sedated just after being ventilated in Sheffield) have helped me to continue to process mentally what has happened to me physically. But it’s not only reacting to the circumstances – sometimes it is simply low mood, to the extent that the smallest thing can trigger strong emotions.

At this stage in my recovery I am beginning to want to think and pray about the future, including how and when to resume teacher training. It has been helpful for me to see some people from the PGCE course recently, including fellow coursemates (now newly qualified teachers – scary!), a mentor and a head of department. Working out the practicalities of what, where and when will be important, but I don’t want to rush into making any firm plans quite yet. I need wisdom!

With each step of recovery come new challenges. But at every stage I am no less at the mercy of God than I was in the photographs of those early days in Sheffield. I know that, as the Psalmist says, “all the days ordained for me were written in your book before one of them came to be.” As He guided me back then, so He will lead me forward to full recovery. Working to get out of my wheelchair and walking again is not as glamorous or attention-grabbing as not being able to breathe or nearly losing my life. But I know through His eyes, every day’s recovery is as important as the next.

I found this song on my laptop recently, and it expresses some of what I am living with day to day:

His peace has eased my troubled mind, He has turned my water into wine. Speaks His words over me, Comes to calm the raging sea, Jesus can ease the troubled mind.

His love has fixed my broken heart, Changed my mind, given me a brand new start. A bruised reed He'll not break, Those He loves He'll not forsake, Jesus can mend the broken heart.

I know His name can heal the sick, Cast out demons, foil the devil's tricks. Nothing is impossible. Nothing is too difficult. Jesus has power to heal the sick.

“Can anything ever separate us from Christ’s love? Does it mean he no longer loves us if we have trouble or calamity, or are persecuted, or hungry, or destitute, or in danger, or threatened with death? ... No, despite all these things, overwhelming victory is ours through Christ, who loved us.” Romans 8:35-37

Helpful as passages such as this are for me personally, the truths they express are universal. Knowing His love has been at the heart of my experience of this illness, and I hope the same is true for you too.

With my love and thanks as always for all your prayers and support,

Luke x

GBS Update: Thursday 8th July 2010

2010-07-08T10:00:00.000+01:00

Thank you for praying for Luke - we are seeing him changing day after day. The OTs met with him yesterday and told him that they are having trouble keeping up with his progress. They said that as fast as they think of another exercise/task for him, he has mastered it, and needs the next challenge! In particular, we are seeing answers to prayer for his legs. Yesterday he realised he could stretch his legs out in front of him, when in the wheelchair and one by one lift each leg up and hold it in the air, stretched out, for a few minutes. He is also able to do some leg exercises as he stands with the help of the standing machine. These are all specifically linked to the prayers we have been praying, so let’s keep looking to God for those steps that he so longs to take.

1 Please continue to pray with us for those legs to increase in movement. He still has ‘dead’ toes, please pray that they too will return to life – he needs them to balance! That taking those first steps will come soon.

2 For a reduction in the medication he is on. They have reduced the pain killer patch he is on from 50 to 37.5, which is good. He is also on two other painkillers, but they all need to be reduced very gradually as he has been on them for such a long time. Please pray as the Doctors plan his weaning, that the pain will not increase. In many ways the sooner he is off the drugs, the better it will be for him long term.

3 Life feels very busy and full for Luke, with therapy, including just the day to day tasks of living and visitors, who he loves seeing. Please pray for space in his day to ‘just be’ and to know God speaking to him about His plans for Luke and what He has for him in the future.

Wonderful grace that gives what I don't deserve

Pays me what Christ has earned and lets me go free

Wonderful grace that gives me the time to change

Washes away the stain that once covered me

And all that I have I lay at the feet

Of the Wonderful Saviour who loves me

Wonderful love that held in the face of death

Breathed, in its final breath forgiveness for me

Wonderful love whose power can break every chain

Giving us life again setting us free

As we were praying this morning, this song came to mind. The wonderful grace that God pours out on our lives is totally undeserved - yet He delights in us. When you face a journey like this, you realise how little you are, and how immense God is. How can it be that we deserve nothing – yet He gives us everything we need to live for Him?

With our love and grateful thanks

Gary and Debbie

GBS Update: Wednesday 7th July 2010

2010-07-07T10:00:00.001+01:00

Luke had a very busy day yesterday, and was very tired by the end of the day, but had been bright and full of energy throughout. He began the day by going to the shops at the hospital and buying his breakfast and then going back to the OT kitchen and preparing his breakfast of poached egg on toast and tea! He did all of this by himself, and it was quite a trek just making that journey around the hospital, quite apart from propelling himself in the wheelchair. He also came to visit Gary in A&E several times. I had taken him in as he wasn’t feeling well, but praise God all was well, and we didn’t have two patients staying overnight at Southampton General!

We have this morning taken delivery of a commode in preparation for Luke’s homecoming at the end of August and for visits in between. We were told by the OT yesterday, that their hope is that Luke will be discharged walking; maybe with sticks, but that they hope the wheelchair will be redundant by then.

Luke has told staff on several occasions, when they keep telling him how well he is doing and at what an amazing rate he is recovering, that it just feels like it has nothing to do with him, but that his healing is just happening to him. That he is just there and healing is taking place, day by day. That is our amazing God!

So thank you for all your support and prayers, and please pray with us today in confidence that He hears and responds to our hearts cries

1 That Luke will make advances today towards those few steps he so desires to take. For this to happen, he needs to be able to stand strongly and for longer periods

2 Continue to pray for the trache opening to heal. The skin around it is quite irritated and sore too

3 For Luke’s immune system to recover and grow strong. One of the concerns is that his immune system which malfunctioned so horribly, is weakened, and they are reluctant for him to put himself in situations where infection is a risk

4 For all of us to remain fit and healthy, and able to support Luke through this prolonged journey

‘I will exalt you, LORD, for you rescued me. You refused to let my enemies triumph over me. O LORD my God, I cried to you for help, and you restored my health. You brought me up from the grave, O LORD. You kept me from falling into the pit of death...... You have turned my mourning into joyful dancing. You have taken away my clothes of mourning and clothed me with joy, that I might sing praises to you and not be silent. O LORD my God, I will give you thanks forever!’ Psalm 30

God called David who wrote this Psalm, a ‘man after my own heart’ and yet David was fallible just like us, but he had an honest heart before God. He cried out often from the depths of despair, but always returned to the fact that God was faithful and loved him, and that he could trust Him. What was true for David then is just as true for us now.

With our love

Gary and Debbie

GBS Update: Tuesday 6th July 2010

2010-07-06T10:00:00.000+01:00

We begin once again, by thanking you for your faithfulness to God and us by continuing to pray alongside us. Luke is going from strength to strength, but there is still the need for grace and patience for us all on a daily basis. Luke was moved at 3am yesterday morning into the next bay along, because the chap he was sharing a room with had an infection and needed to be in isolation. It was a bit frustrating, but he seems to be taking hiccups like this in his stride these days, even in the middle of the night! He went on to have a busy day, but rehab is quite inhibited by the limitations of being on a ward rather than in the rehab unit, where he would have had his own room and access to a wheelchair from his bed. On the ward it is very cramped and means he remains dependent on others to get the wheelchair for him etc.

He was able to stand with the help of the machine for about 10-15 minutes yesterday, and it was wonderful to see him at his full height of 6 feet 2 inches again, the first time I had seen him stand since March! He is also now able to lift each foot from the floor onto the wheelchair pedals. This is only an inch or so, but he has the muscle strength to do it, without the help of his hands – amazing! He has been weighed and has lost 12 kilos, taking him from 12 stone to a bit over 10, a very low weight for his height – he needs building up!

So come with us in prayer to the One who holds all things, knows all things and cares about every minute detail of our lives

1 Please thank God with us for the healing unfolding before our eyes. We have been praying for his legs and feet and they are coming back to life!

2 Please pray for Luke to regain the weight he has lost. We have been given confusing and sometimes conflicting advice re diet from different sources at the hospital, but a dietician friend of Luke’s was very helpful yesterday. Please pray for wisdom for the hospital staff and us in helping him strengthen nutritionally

3 Please pray for his scar where the trache was, to heal. It would usually heal up within 2 weeks, but it has been 3 weeks now and it seems to be over-granulating and not healing. Please pray for God to heal it completely

4 That he would continue to see God’s plan for him and know His peace and love

‘What, then, shall we say in response to this? If God is for us, who can be against us? He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things?’ Romans 8: 31-32

With our love and greatest thanks

Gary and Debbie

GBS Update: Monday 5th July 2010

2010-07-05T10:00:00.000+01:00

Tomorrow (Monday) will be my one hundredth day in hospital. Although much has happened in those hundred days, in a strange way I find myself in a very similar condition physically now, compared with the end of the very first day. I am therefore very happy to say that I have only one day’s worth of deterioration left to get better! I know many people would consider 100 days of hospital as cause for discouragement; and although I would never pretend to have chosen this had it been offered to me beforehand, I now see 100 days as cause for celebration. I know that I could never have endured this syndrome alone, so one hundred days is, for me, a milestone of thanks and gratefulness to a God who has never failed to sustain me throughout this illness so far. When there is someone as Big and as Great as He in your life, when something as big and potentially deadly, as Guillain Barre is, comes into your life, your world doesn’t fall apart. It simply shifts – somewhat!

From the early days I have been moved by this song, which speaks of the all-consuming greatness of the God I believe in:

O Lord my God! When I in awesome wonder, consider all the works Thy hand hath made

I see the stars, I hear the mighty thunder, Thy power throughout the universe displayed

Then sings my soul, my Saviour God to Thee, How great Thou art! How great Thou art!

Then sings my soul, my Saviour God, to Thee, How great Thou art! How great Thou art!

When through the woods and forest glades I wander and hear the birds sing sweetly in the trees

When I look down from lofty mountain grandeur and hear the brook, and feel the gentle breeze

And when I think that God His Son not sparing sent Him to die-I scarce can take it in

That on the cross my burden gladly bearing He bled and died to take away my sin

When Christ shall come with shout of acclamation and take me home-what joy shall fill my heart!

Then shall I bow in humble adoration and there proclaim, my God, how great Thou art!

My progress since the removal of the tracheostomy seems to have snowballed but nevertheless, please don’t stop praying for my full recovery! Know that in continuing to press on you are joining with men and women all over the world all asking God for the same thing! This week I aim to make faster progress on my standing, so please pray with me for the strengthening of my legs and core. I would be delighted if, by the end of the week, I might be able even to take a few steps.

My visit home on Friday was fantastic – a sign of how far I have come, but also of just how far there is to go. So please pray knowing as I do that He hears every prayer and does not tarry in answering.

With my love and thanks as always

Luke x

GBS Update: Friday 2nd July 2010

2010-07-02T10:00:00.000+01:00

Luke comes home today!! Only for an hour or so, but nonetheless it will be his first time at home since March 26th. His practice transfer to car went really well yesterday and the Physios and OTs were confident that he was safe and able to get in and out of the car by himself, with the help of a banana board. And when he asked if we could go for a drive afterwards they said we could. So we went on a jaunt around Southampton for an hour or so including a visit to Southampton Water, Luke was delighted to leave the hospital site and especially to just sit by the water, and smell the sea air! We are all set for a home visit today.

So thank you so much for bearing with us, we do so still value each prayer. Every day Luke is improving, but we take nothing for granted. We don’t live in fear, but do want to continually seek God’s presence with us on this journey through to recovery. Please join with us this weekend in thanking God for all He has done and is doing in Luke’s life, and indeed all of our lives. Every single one of us is of huge value to Him and this old hymn sums up the sense of gratitude we have this morning for His great faithfulness to us.

Great is Thy faithfulness, O God my Father;

There is no shadow of turning with Thee;

Thou changest not, Thy compassions, they fail not;

As Thou hast been, Thou forever will be.

Great is Thy faithfulness!

Great is Thy faithfulness!

Morning by morning new mercies I see.

All I have needed Thy hand hath provided;

Great is Thy faithfulness, Lord, unto me!

With very much love

Gary and Debbie

GBS Update: Thursday 1st July 2010

2010-07-01T10:00:00.000+01:00

Another month, another update!! Just wanted to update you on Luke’s goal planning meeting of yesterday. The Physios and OTs are very pleased with Luke’s rapid progress. Their plan is to get him moving by himself as soon as possible, obviously, and the first steps towards that are to work with him to be able to get himself up and showered in the mornings, rather than having to depend on nursing staff for this to happen. Yesterday he was able to transfer to shower, and wash pretty well by himself. He was out in the wheelchair for much of the day, so by the end of the evening he was very tired. This is only to be expected they say, as everything requires so much effort. The Physios and OTs are keen to get him out of hospital for visits etc and for example to help him with one of his goals, which is to go swimming.

The doctors too are pleased with Luke’s progress, but they want to pace him, and not make him vulnerable to any setbacks by being over ambitious, because he is doing so well. His blood pressure is still quite low, but we have no idea what was normal for Luke before GBS. He also has a rapid heart rate. Both of these they think are due to GBS, and because of this they are keen to keep his goals as safe as they can. They are also aware that his immune system needs recovery time, so a possible day trip to the Brighton Conference next week, has been vetoed!

A date was set yesterday to work towards, for Luke’s discharge, which will be at the end of August. This is not set in concrete, but they are hopeful that he will be able to come home by then if not before, given his rate of improvement! If that happens, it will be five months since he was admitted to hospital. Not a bad prognosis, given we were told in the early days that he could be ventilated for a year or so!

So please come with us in prayer to Father God, who knows us better than we know ourselves, and has plans for each one of us that we do not yet know, but can trust Him for entirely

1 Please pray for Luke’s blood pressure and heart rate to normalise. These are both crucial for him to be able to move on in his recovery

2 That he will continue to confound the team by his rapid strengthening, and range of movement

3 For the transfer to car practice this morning to go well

4 That God will be growing things in him now, and indeed all of us, that will serve to glorify Him in the days and weeks and years to come. That Luke will know God’s peace in the day to day, ‘living it out’ recovery.

......."Let the beloved of the LORD rest secure in him, for he shields him all day long, and the one the LORD loves rests between his shoulders." Deuteronomy 33:12

This verse has long been ‘hidden in my heart’ as it were and it seems especially pertinent today. However each day pans out, God shields us through it, and we can rest in Him, and know the peace which only he can give.

With our love, and grateful thanks as always

Gary and Debbie

GBS Update: Wednesday 30th June 2010

2010-06-30T10:00:00.000+01:00

Thank you for all your prayers for Luke to have a home visit asap. When I arrived yesterday his physio came to say that they would like to practice a car transfer with our car at the hospital on Thursday, with a view to letting Luke, if all goes well, come home for an hour or two on Friday, when the OT’s come to assess our home for accessibility. What a swift answer to prayer! The physio said they were all amazed at the rapid progress Luke is making. Luke stood up for several minutes longer yesterday, with the help of the machine, but was actually able to lift himself off the bed from a sitting position, and stood waiting for the machine to catch him up!

The bible tells us that the prayers of a righteous man are powerful and effective, and we are righteous simply because of Jesus, so thank you for keeping on praying – your prayers are having much effect! With that in mind, please pray with us today

1 Please give thanks with us today for the amazing intervention of God in Luke’s life. We see Him outworking healing every day and are so grateful.

2 For the goal planning meeting this morning, which we will be attending as well as Luke. That the team would be open to many of his goals, some of which are optimistic, but we do have a God of miracles!

3 For the car transfer practice tomorrow to go well. That we would get the hang of how to assist Luke when he doesn’t yet have full movement.

4 That God would speak to Luke about the future, both short term and long term. That Luke would be led by Him with regard to goal setting today and also for the bigger picture of the future ahead.

“To whom will you compare me? Who is my equal?” asks the Holy One. Look up into the heavens. Who created all the stars? He brings them out like an army, one after another, calling each by its name. Because of his great power and incomparable strength, not a single one is missing. O Jacob, how can you say the LORD does not see your troubles? O Israel, how can you say God ignores your rights? Have you never heard? Have you never understood? The LORD is the everlasting God, the Creator of all the earth. He never grows weak or weary. No one can measure the depths of his understanding. He gives power to the weak and strength to the powerless. Isaiah 40: 25-29

None can compare to our mighty God, and we see Him giving power and strength to Luke’s weak body day after day. There truly is no one like Him!

With love

Gary and Debbie

GBS Update: Tuesday 29th June 2010

2010-06-29T10:00:00.000+01:00

Thank you so very much for all your prayers, and for the messages and cards that you still send. They remind us and Luke of just what an amazing bunch you are and we are continually thankful to God for giving us faithful friends to walk with us and pray alongside us. We deserve nothing, and yet God’s heart is full of compassion when He allows trials to come. He doesn’t stand remote or leave us alone, but walks right alongside us and holds us and we feel the power of your prayers every day.

Luke continues to progress! The physio told him yesterday that the flicker of movement in his feet, though small, is increasing in strength, and she can feel his muscles moving. There are hiccups, as rehab moves up onto the ward, and a shortage of staff meant that Luke did not get washed until 11.45am yesterday which was quite frustrating for him. But overall, the rehab is more stimulating for him and helping him to move on. He and we have a goal planning meeting tomorrow with the rehab team, to look at the things Luke would like to achieve in the coming days and weeks, which is exciting! He spent much of the afternoon in the wheelchair and we went for a walk outside and had coffee in the coffee shop, which was a treat.

So please pray with us today

1 For the rehab team to be able to function as they would have before the move. Apparently, they are helping to nurse patients who are much more ill than Luke on Stanley Graveson, which means that the more well patients have to wait. He totally understands this, he was very ill once! But please pray too for grace and patience for Luke, when it’s easy to feel you are bottom of the pile in terms of priority

2 For wisdom for everyone involved in the planning meeting tomorrow, that Luke’s aims and objectives would be the right ones for him. He longs to visit home asap

3 That he will continue to strengthen day after day, and see more and more movement return ‘But You, O LORD, are a shield around me; You are my glory, the One who holds my head high. I cried out to the LORD, and He answered me from His holy mountain. I lay down and slept, yet I woke up in safety, for the LORD was watching over me.’ Psalm 3:3-5

Our awesome God sees it all, and knows everything about us. Not a single thought of ours escapes Him, yet His love for us is unfailing and unending.

With our love

Gary and Debbie

GBS Updates: Monday 28th June 2010

2010-06-28T10:00:00.000+01:00

From Luke, written by hand Sunday 27 June

An old friend reminded me a couple of weeks ago to remember to look back at how far I have come, rather than solely to dwell on how far there is yet to go. So today, at the beginning of a new week, and three months to the day since I was admitted to the Royal Hallamshire in Sheffield, I am doing just that.

This morning a member of staff brought me an article from the Mail on Sunday’s review supplement, featuring Alex Uttley, leader of Britain’s Got Talent’s winning act Spelbound. He is the same age as me, but had Guillain Barre Syndrome five years ago. What interested me in particular was that the paper quoted a doctor from this hospital saying that Alex’s case was ‘severe’. Alex was in hospital for twelve days. I was left wondering how that doctor would describe my case! And with a sense of thankfulness to a God who has sustained me through a condition which is worse than severe – indeed over a whole period of time during which I have been close to death. Recently I have been struck again by the words of a song which expresses this so well – the words come alive in my circumstances.

Who, oh Lord, could save themselves,

Their own soul could heal?

Our shame was deeper than the sea

Your grace is deeper still

You alone can rescue, You alone can save

You alone can lift us from the grave

You came down to find us, led us out of death

To You alone belongs the highest praise

You, oh Lord, have made a way

The great divide You heal

For when our hearts were far away

Your love went further still

Yes, your love goes further still

You alone can rescue, You alone can save

You alone can lift us from the grave

You came down to find us, led us out of death

To You alone belongs the highest praise

So it is with a deep sense of gratitude that I begin the week asking Him for more. After a great weekend seeing family, friends and my lovely dog Barney, I would love to go home soon! I am planning on asking the team again tomorrow to get me ready to visit soon. Please pray with me that all the relevant steps would be in place very soon.

Then there is the strength and movement in my limbs. These are always improving – there is momentum. So much I could say, but I hope to fill you in in tomorrow’s update!

Thank you once again for standing with me through the severest of times.

Much Love

Luke x

GBS Update: Friday 25th June 2010

2010-06-25T10:00:00.000+01:00

Just a brief update before the weekend, mainly to say that praise God, we now have movement in both ankles!! Luke was absolutely delighted, that after many weeks of waiting and wondering if there may be damage to the nerves in the legs, he was able yesterday to lift both feet off the floor by about one inch. He also spent three and a half hours yesterday afternoon in a wheelchair and is able to move himself around sufficiently to turn around and move backwards and forwards. Joel and I then went with him to visit his old friends in Neuro ICU. We saw three of the consultants who looked after him, and they were amazed at his progress in just 10 days off the ventilator. One of the consultants had spoken to us before we left ICU and told us that the last GBS patient they had, was on ICU for 10 months, followed by a year in rehab. For Luke to be at this stage after 3 months is a miracle, especially considering what we were told about the severity of his illness at the outset. We are both overwhelmed and astounded at the amazing grace God has poured out on our son.

This weekend we just want to thank Jesus our amazing Saviour, for the outworking of His healing power in Luke’s life, which we see unfolding daily.

‘Then Jesus declared, "I am the bread of life. He who comes to me will never go hungry, and he who believes in me will never be thirsty.”’ John 6:35

With much love

Gary and Debbie

GBS Update: Thursday 24th June 2010

2010-06-24T10:00:00.000+01:00

Lord, I come before Your throne of grace

I find rest in Your presence,

And fullness of Joy

In worship and wonder,

I behold Your face

Singing what a faithful God have I

What a faithful God have I

What a faithful God

What a faithful God have I

Faithful in every way

Lord of mercy, You have heard my cry

Through the storm You’re the beacon

My song in the night

In the shelter of Your wings

Hear my heart’s reply,

Singing what a faithful God have I

When Luke e mailed on Tuesday he asked you to pray with him for two things: strength above the knees and movement below the knees.

When I arrived yesterday he told me that the physios have asked the occupational therapists to come today to assess him for a ‘normal’ wheelchair, as they feel he has sufficient strength and mobility in his upper body to think about him starting to be able to use a wheelchair, to transfer to the bathroom. And during yesterday’s physio session, the physio told him she could feel a flicker of movement in his right ankle, that as she moved his foot forward he actually was able to help move it! These are both remarkable answers to prayer and though they seem small steps they are actually huge strides for Luke!

In addition to this, he had his first shower yesterday for 3 months - they moved him to the chair and then hoisted him into the shower! So yesterday there was much to celebrate, what specific answers to prayer we have already received. We have a God who loves to draw near, and engage with us as we seek His face, so please continue with us to look to Him for more and more healing for Luke. His greatest wish at the moment is to get to the place of being able to come home for a visit, followed by a few ventures further afield. This seems such a long way off, and yet we see changes every day – please pray with us that God will bring about Luke’s full healing at just the right time. We have all come so far on this journey, and we truly do have a Faithful God!

With greatest love and thanks for continuing with us

Gary and Debbie

GBS Update: Wednesday 23rd June 2010

2010-06-23T10:00:00.000+01:00

When I arrived at the hospital yesterday Luke had the rehab physios doing a full assessment on him. The rehab doctor then arrived to say that Luke was being transferred to the rehab team from yesterday. We had been led to believe that this wouldn’t happen fully for a number of weeks, but we can now say that Luke is officially in rehab!! Luke is amazed at God’s timing as his personal prayers have been that he would move on to rehab within a week of going up to the ward.

It was dawning on Luke afresh yesterday, how far he has come and how far he still has to go though, in terms of actually being able to make car journeys and even to come home for an afternoon. But he has come such a long way, and in many ways the hardest bit is over, and now it’s just a matter of his body strengthening. We know this will come and we have so much to thank God for.

Luke is now able to sit on the edge of the bed and bend to touch his toes. He has quite a lot of control over his core, i.e. he can lean to either side without falling, but can feel quite unsafe about leaning forward in that position. He sat out in the chair for two lots of an hour and a half yesterday, and this is something he will be doing more and more of to help his body strengthen. He now has such a lovely spot to sit in, with wonderful views out to the Isle of Wight, and he feels really blessed.

So thank you all for your constant prayers, we feel like we are in an army marching forward, continuing to follow Jesus and looking to him to complete his healing work

1 Thank our wonderful God with us for the mighty work He is doing in Luke

2 Please continue to pray for grace and patience, especially for Luke as he now faces the challenge of regaining his strength, which is physically very tiring

3 For wisdom for the physios as they pace his rehab, that they will push him but not overtire him

4 For those ankles and feet, that don’t seem to want to wake up! Please pray that the nerves will repair and start to conduct messages from the brain to the muscles

5 For Luke to be encouraged by God hour by hour, and to know His peace, which only He can give

‘Though I feel afraid of territory unknown,

I know that I can say that I do not stand alone.

For Jesus You have promised Your presence in my heart;

I cannot see the ending, but it's here that I must start.

And all I know

is You have called me,

and that I will follow is all I can say.

I will go where You will send me

and Your fire lights my way.’

Whatever circumstance we may face in Life, Jesus has gone before us. This next stage of the journey is unknown to us, but totally known to Him. This song reminds us that as we put our hand in His, He is totally to be trusted and will guide us every step of the way

With our love and thanks

Gary and Debbie

GBS Update: Tuesday 22nd June

2010-06-22T10:10:00.000+01:00

A note from Luke, handwritten by him, yesterday afternoon 21/6/10

He giveth more grace when burdens grow greater

He sendeth more strength when the labours increase

To added afflictions He addeth His mercies

To multiplied trials His multiplied peace

When we have exhausted our store of endurance

When our strength has failed ere the day is half done

When we reach the end of our hoarded resources

Our Father’s full giving has only begun

His love has no limit, His grace has no measure

His power no boundary known unto men

For out of His infinite riches in Jesus

He giveth and giveth and giveth again

By Annie Johnson Flint

Today, it is two months since the day I came close to losing my life. On that day so many of you rallied with us in prayer, in addition to many prayers before and since. It simultaneously seems logical and yet unbelievable that just two months after the day God saved my life, I am told I am moving into rehab. During that time the above poem, discovered and sent to us by friends in Chester, has resonated with me so much. Whatever strength I bring to the table during this process of recovery, it pales into invisibility compared with the limitless storehouse of strength available to me in Jesus. I have been learning something of what Paul meant when he said, ‘I can do all things through Christ who gives me strength.’ Phil 4:13 I want you to know that I feel that this whole experience has already been such a positive one in my life. I can genuinely say that, despite the pain, frustration, anxiety and disappointment, that I have known such love, strength and joy from God. This experience has been a means of His grace to me!

I mentioned that I am told I’m moving to rehab – in fact, rehab has moved to me! Although I won’t formally be under the care of the rehab team for a few weeks, they have moved into the Stanley Graveson ward and their doctor came to see me today to say that I will be seeing more of them immediately! From intensive care to rehab in just one week is more of a jump than I expected, and yet it was just what I’ve been praying for over a fortnight. There has been the predictable re-organisation happening on Stanley Graveson today and I have now been moved to what I think of as the best seat in the house, with views across Southampton, the docks, the New Forest and even the Isle of Wight – definitely the best view so far, and as my pharmacist said today, probably the best view in the hospital!

So here I am in a new bed space and ready to make all the more progress in the next week. The things I’m praying for are:

· Strength above the knees. Today I had a few more attempts at standing (using the same machine as before) and transferring from bed to chair and back again. Once I’ve made progress on these I will be almost ready for discharge!

· Movement below the knees. There is some in the calves but I still need those dead ankles and toes to come to life!

Seeing old friends and family recently has reminded me of the journey I’ve been on and how much I have to be thankful for in an army of such formidable and faithful pray-ers. Thank you for every prayer. I could not appreciate them more.

With my love and thanks as always for all your powerful prayers

Luke x

GBS Update: Monday 21st June 2010

2010-06-21T10:00:00.000+01:00

Thank you for your prayers over the weekend for Luke. He enjoyed visits from friends and family, and has settled well onto the ward. The top half of his body is really coming on strength wise, and when we left him last night he was practising writing with the help of splints on his wrists. He had tried writing last week and it was a real scrawl, but last night it was much clearer and beginning to look like Luke’s writing. He is using both of his hands to eat and drink, and can now reach over to his table and pick things up, eg drinks and books if they’re not too heavy. Because he is using his arms so much we can begin to see the start of biceps emerging!

Luke thinks that his legs may be starting to come back, as they have started to ache because they are not moving. This is a new type of feeling, and together with increased pain in his feet would indicate to us that maybe things are on the move. He had the nerve conduction tests on Friday morning, so should be getting the results from that this week.

So as we embark on a new week, please come with us in prayer to our Mighty God to thank Him for all He’s done and to ask Him to continue His wonderful healing work in Luke

1 Please thank God for the massive progress we have seen over recent weeks. His cousins who visited yesterday hadn’t seen him for 3 weeks, and couldn’t believe the difference in him. When they last saw him he could only lift his hand if they put it on his chest, so that it was elevated first. Now he’s able to feed himself sandwiches and drinks. He’s not up to a knife and fork yet – but please pray that will come next 2 Please continue to pray for his legs and feet, especially with the new feelings that movement will follow. His feet are still completely ‘dead’ 3 He continues to call the ward the ‘just have a go’ ward! Please pray that there will be lots of opportunities this week for him to have a go at something new! 4 That he will be able to have more strength in his fingers and control too. Luke LOVES writing, please pray for that ability to come back really soon ‘Those who trust in the LORD are like Mount Zion, which cannot be shaken but endures forever. As the mountains surround Jerusalem, so the LORD surrounds his people both now and forevermore.’ Psalm 125:1-2

God’s heart for us is immense and as we trust Him He truly does surround us, protecting us and hedging us in. Even when He has allowed our journey to take what is for us, an unexpected turn, He continues to be faithful to us.

With love and thanks

Gary and Debbie

GBS Update: Friday 18th June 2010

2010-06-18T10:00:00.000+01:00

Just thought we’d send out a quick update before the weekend, and wanted to start by saying how appreciative we are of the messages you continue to send, for all your care and especially of course for you continuing to intercede with us for Luke. We never take lightly that you are all investing your time and energy and are hugely grateful that nearly 3 months down the line, there are so many of you still ‘with us.’ Thank you from our hearts.

Luke is thriving and stood up for the first time yesterday! It was with the help of a piece of equipment that ‘pulled’ him up from the bed, but he twice managed 1 or 2 minutes standing. He said that his legs felt hugely stretched and he spent the whole time concentrating on that, but was thrilled none the less. He also drank from a cup without a straw by himself, brushed his teeth for the first time unaided and helped with the daily wash. He says that he is going to call this ward the ‘just have a go’ ward! The doctors have told him he can expect to receive ‘rehab’ in a matter of days rather than weeks, but that it will be likely to be on the ward he is on, as the rehab unit is transferring there on Monday. Just to say thank you for praying for Luke’s circulation, his hands and feet have been fine since we asked for prayer, praise God!!

So perhaps you could join with us over the weekend in praying

1 Thanking God for the huge strides Luke is taking. One of the nurses said to us that she has never known such a rapid recovery from such a severe form of GBS

2 That Luke will continue to thrive on the new ward and for an ongoing strengthening in every area. His feet are still totally paralysed, but they will be doing another nerve conduction test next week to see the extent of any damage/inflammation in all of his body, but we are particularly interested in his legs and feet

3 That God will continue to protect him, love him and speak to him We are all beginning to see the possibility of life outside of hospital. Whilst Luke was on the ventilator and in ICU/HDU, coming home seemed a long way off. It feels now like there is light emerging at the end of a very long tunnel. We are so grateful to our wonderful God, for holding us, sustaining us and giving us hope even through the darkest of times.

‘The LORD is my shepherd; I shall not be in want. He makes me lie down in green pastures, He leads me beside quiet waters, He restores my soul. He guides me in paths of righteousness for His name's sake. Even though I walk through the valley of the shadow of death, I will fear no evil for You are with me; Your rod and Your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the LORD forever.’ Psalm 23

With our love

Gary and Debbie

GBS Update: Thursday 17th June 2010

2010-06-17T10:00:00.000+01:00

Thank you so much for all your prayers for Luke’s move. He had a really good day yesterday and seems settled and happy in his new abode! He had visits from lots of the nurses and physios on ICU/HDU and was delighted that they had taken the time to come up and see him. The Neuro doctor told him that he was going to recommend to the consultant that Luke is referred for rehab straight away as he is doing so well. It would appear, however, that the rehab unit we visited on Tuesday is being moved over onto the ward Luke is on, so it remains to be seen where Luke will be for rehab. But either way they are saying that he is strengthening so well that rehab is next.

Luke’s medication for pain has now been reduced to just three different drugs, plus paracetamol and also local anaesthetic patches for his feet at night. This is massive progress from where he was and means that his pain is getting less and less, for which we thank God. He has progressed from the stretch chair to the anatome chair which he can shuffle onto using a banana board which they sit him up on. Although he cannot himself make the transition from lying down to sitting up, he can hold himself in a sitting position on the board as they manoeuvre him into the chair. Yesterday he fed himself his sandwich tea and drank a bottle of drink holding it totally by himself with both hands and without a straw - as you can see there is much to celebrate and give thanks for!

So please pray with us

1 Thanking God for the amazing acceleration we are seeing in Luke’s recovery, and for the way in which he has settled in upstairs

2 Please pray for a clear way forward with regard to rehab. It all feels very unclear at the moment, I’m not sure even the staff know quite what’s happening with location etc

3 Luke is visiting the gym this morning and they are going to try some form of exercise to prepare him for standing, but he still has no feeling in his feet at all or movement. Please pray for this to return and for his legs to gain in strength

4 That Luke will know God’s steadfast love towards him continually and see in ever increasing measure His purposes for Luke’s life

‘Through all that I have known, I have been held in the shelter of Your hand;

And as my life unfolds, You are revealing the wisdom of Your sovereign plan.

There are no shadows in Your faithfulness, there are no limits to Your love.

I'm grateful for the air I breathe, I'm so thankful for this life I live, For the mercies that You pour on me, And the blessings that meet every need. And the grace that is changing me from a hopeless case to a child that's free, Free to give You praise, for in everything I know You love me.’

We have sung this song over many years and never has it been more pertinent than now. God is shaping us, and changing us and making us more and more into what He always intended us to be. He is totally to be trusted and worthy of our Praise.

With our love and thanks

Gary and Debbie

GBS Update: Wednesday 16th June 2010

2010-06-16T10:00:00.000+01:00

After 80 days in hospital Luke has been transferred out of the Neuro ICU/HDU, and is up on the ward. We had two false starts earlier in the day, when he was ready to go but it was cancelled, but eventually at 7pm last night he was moved. It was lovely for him to have Esther and James, his former housemates who were visiting at the time, with him, and they helped settle him in. So onwards and upwards to the next stage of our journey!

Yesterday afternoon Luke had a trip in the stretch chair over to the rehab centre which is one of a possible two that he will be transferred to next. There are 8 beds, and Luke is keen to get over there. The physio who is up on his new ward, came for the twilight shift, to do his stretches. She hasn’t seen Luke for 12 days, and could not believe the difference in him! No trache, strong voice and so much more movement in his arms. His wrists seem to be strengthening, as he has increasing control over them, but not much strength yet, and although full recovery is a long way off he is strengthening all the time.

So thank you so much for continuing to pray, your prayers are powerful and effective and so we come with more to pray for today

1 Please continue to pray that Luke will adapt well to this new phase, and like a dear friend e- mailed yesterday, to look at how far he has come, rather than how far he has to go!

2 For his circulation. His hands and feet are constantly cold, whilst the rest of him is warm, so it’s very hard for him to get comfortable. We are sure this is due to the GBS as Luke would normally have really warm hands and feet

3 Please pray for him to remain stable without the ventilator

4 Please pray for a bed to become available sooner rather than later in rehab. Because there are so few beds and this unit covers such a wide area, serving a population of 2.8m, the throughput in the unit is slow, and there could be quite a wait

5 For God to be growing things in Luke which will bring much fruit in the years to come, that Luke will continue to know His heart towards him day by day

‘For I can do everything with the help of Christ who gives me the strength I need.’ Philippians 4:13

Apart from God this is an impossibly difficult path, but He gives strength for today and hope for tomorrow, for which we are so grateful

With our love and thanks

Gary and Debbie

GBS Update: Tuesday 15th June 2010

2010-06-15T10:00:00.000+01:00

Luke is now ventilator free, breathing totally by himself and his oxygen levels are good, for which we thank our Mighty God! The planned move did not take place yesterday, as the bed on the ward had been taken by somebody else, so the aim is to move him late morning today. It was so brilliant to see him without any appendage to his body, and it feels to us like a real milestone for him. It was a little frustrating to not move yesterday, but he was able to visit a friend in the stretch chair in the afternoon, who had come to the Wessex Neuro Centre for some treatment. It was quite something, Luke actually visiting somebody in hospital instead of being visited!

The physios told him yesterday that they could feel some flicker of life in his wrist extension, which is the part that when strengthened will enable him to have control over his wrists, rather than have them hang limp. This is another positive step towards being able to use his hands and arms properly.

So our journey continues, and today we’d like to ask you to continue bearing with us and pray for the next leg!

1 Please pray that the move takes place today and that Luke will settle in and adapt to his new surroundings

2 Please pray that there won’t be any relapses in Luke’s recovery – whenever he has moved so far there has been a downturn in one way or another. We are not superstitious, but would just ask that you pray that God will protect him from going backwards, and that actually the reverse would happen this time and that Luke’s recovery would accelerate

3 Luke’s body temperature was normal yesterday, but parts of him felt hot whilst others felt freezing cold, and it was difficult for him to get comfortable. Please pray that this will settle and that he will feel comfortable

4 The consultant told us yesterday that Luke’s spell in rehab is likely to be as long as he’s already been in hospital. This was actually quite down hearting for Luke as 3 months feels a long time, yet we recognise that for GBS that would actually be very quick, especially considering the severity of his illness at the outset. Our prayer is that God will give him grace and patience whilst at the same time praying for a speedier recovery – our God is a God of miracles!

‘May the LORD answer you when you are in distress; may the name of the God of Jacob protect you. May He send you help from the sanctuary and grant you support from Zion. May He remember all your sacrifices and accept your burnt offerings. May He give you the desire of your heart and make all your plans succeed.’ Psalm 20

Our greatest thanks once again to all of you for continuing with us. We know that this is proving to be a long race, and are so grateful that God has brought you alongside us - we know the power of your prayers in our lives. May He bless you richly for your faithfulness. He alone is our Rock and our Refuge, and we can trust Him in every step

With our love

Gary and Debbie

GBS Update: Monday 14th June 2010

2010-06-14T10:00:00.000+01:00

From Luke Dictated Sun 13th June

By the time you read this, my trache will have been removed and patched up and it will finally be down to my lungs alone to give me oxygen! I will have had 48 hours on the speaking valve and trache mask without any ventilator support, during which my oxygen levels have been fine. This means that I no longer need to be getting the type of care I’ve had so far and so by Monday afternoon I will have been moved up to Southampton General’s Stanley Graveson’s ward. It is likely that I will stay here for at least a few days whilst the medical team assess my stability off the ventilator. The only place for me to go after this is rehab, which is just across the car park. What we don’t know, is just how quickly I will be moved over. Nevertheless, this move in itself is something to thank God for. Thinking back over the journey I’ve been on over the past 11 weeks, it is amazing to me that so many of our specific requests for prayer have been answered. Thank you once again so much for standing with us in it.

Today I’d like to ask you to pray for the following things which are often on my mind at the moment

1 That I will continue to be stable without any ventilation support. A relapse at this stage could mean an even longer weaning process all over again

2 Energy. I have been told that for quite some time to come everything I do will consume a lot more energy than I would expect in ‘real’ life. Obviously, it will take time for me to get my normal strength back, so I suppose I will need more patience too

3 Please pray that I will settle into my new environment quickly. I have been in this unit for more than 8 weeks and have gotten to know most of the staff personally. I have made a lot of friends! So it will be quite a change for me

Thank you once again for all your prayers and support. At a time like this, when my surroundings are changing, I have been particularly aware of God’s presence with me in this trial. He never changes and I’m so grateful that He has been walking next to me throughout this journey.

Love,

Luke x

GBS Update: Friday 11th June 2010

2010-06-11T10:00:00.000+01:00

Luke’s outing in the stretch chair yesterday was a visit up to the ward where he will be transferred to, after HDU. He was glad to see where he will be going, and is now looking forward to and is ready for the next stage of recovery when it comes. He was off the ventilator for 2 x 4 hours and 1 x 3 hours yesterday, and the plan for the next couple of days is for him to be off the vent throughout the day and back on at night. Last night he seemed to have coped well with being off the vent for such long periods, and our prayer is that he will continue to thrive.

His right arm is fast catching up with his left, and he was able to fold them across his chest last night, which made us smile. After being ill and paralysed for so long, it seems odd when he starts to do little, normal things and brings much joy to all of us!

So please pray with us over the weekend

1 For Luke’s progress in coming off the ventilator to continue. That he will cope well with being off the vent all day and suffer no ill effects

2 That his BP would not drop, and that the levels of oxygen in his blood would remain at 100% even with prolonged periods off the vent; in other words that he will cope well breathing by himself

3 For increased strength in his arms and for life to return to his legs, and feet in particular. His shoulders also have become quite stiff, please pray for them to loosen which will help in him being able to lift his arms properly

4 Thank our Mighty God, for His awesome works of power in all of our lives. He is not a God who stands distant and remote from us, but longs to be intimately involved in our lives, and we are so grateful

‘Fear the Lord your God and serve Him. Hold fast to Him and take your oaths in His name. He is your praise; He is your God, who performed for you those great and awesome wonders you saw with your own eyes.’ Deuteronomy 10:20-21

We are seeing His great and awesome works unfold before our eyes, as He brings healing to our son. Thank you for partnering with us, our God is mighty in His power, and unfailing in His love.

Our next update will be on Monday, unless there is something significant to update before then. You have been and are amazing, faithful friends – and we thank you!

With our love

Gary and Debbie

GBS Update: Thursday 10th June 2010

2010-06-10T10:00:00.000+01:00

Luke had another good day yesterday, so thank you so much for your prayers. He was on the ventilator for an hour and off for two, so throughout the day managed 8 ½ hours or so off the vent. He said that he felt fine, which is a vast improvement on a couple of weeks ago, to manage so long without any ill effects. He continues to banter with the nurses, physios and doctors, and as I walked up the corridor yesterday one of the cleaners stopped me and said ‘Wherever your son is, there is laughter!’

So today we’d just like to ask you to join with us in praying for improvements to continue and for Luke to continue to be of good mood. He is very aware of God working things out in his life, and allowing this because He loves him.

1 Thank God for His constant hand on Luke’s life and for the healing that is unfolding before us

2 Please continue to pray for successful weaning off the vent at the right time

3 For Luke’s blood pressure which is low for a lot of the time. Please pray that it wouldn’t drop too low

4 That the repairing of Luke’s nerve endings would progress, that he might see movement in his feet which have no feeling or movement. Also for his wrists, which are still weak and limp. He can lift his fore arms, but not his whole arms yet, and has little control over his hands and fingers when his arms are raised

‘Let us hold tightly without wavering to the hope we affirm, for God can be trusted to keep his promise.’ Hebrews 10:23

God has shown us throughout this whole journey that He is faithful. He can be trusted to keep His promises, even when what we see with our eyes is not yet what He has promised. We do believe the promises He has given us over Luke’s life, and indeed all of our lives and will continue to look to Him to accomplish that which only He can do!

With grateful thanks and love

Gary and Debbie

GBS Update: Wednesday 9th June 2010

2010-06-09T10:00:00.000+01:00

Our thanks once again, for journeying on with us in prayer for Luke. He is going from strength to strength, albeit small steps day by day, but we thank God for the amazing healing work we have seen so far. Yesterday Luke had 6 hours on the ventilator and 6 hours off during the day. He was quite tired, but the physios tell him that whatever he does at this stage of recovery he will find wearying. Our prayer is that this is paced just right and that he won’t overdo it.

Another highlight for Luke was a trip to the shops on Level C in the stretch chair and with the trache mask. There are various shops on this level, and we had a wander around WH Smith and he chose a couple of magazines, and then we went outside and spent some time in the sun, which had just come out after a morning of rain. He seemed to really enjoy a bit of normality, and remarked on how busy it was and how many people were rushing around. Having spent almost 3 months on a ‘quiet’ ward, seeing so many people so busily moving around was quite overwhelming.

His right arm is increasing in movement too, and catching up with his left. Both arms are still very wobbly, and it can be quite amusing at times when he lifts them and they flop, but any movement is cause for celebration.

So, as you can see there are lots of answers to prayer for which we are so grateful but we desire more!

1 Please thank our amazing God for His sovereign hand on Luke, and for the way in which He is bringing about His healing work in Luke in His time

2 Please pray that the pacing will be good for Luke and that he will strengthen day by day. He was off the vent and in the chair on our trip, for about an hour yesterday and was nowhere near as tired as he had been the day before. Please pray that this will continue

3 The gym has been closed due to a leak from the floor above, but the physios have said they may be able to bring the gym to him as it were, in form of some equipment that he may be able to use on the unit. Luke would really like this as he loves physio. It really helps him feel he is strengthening and getting nearer to his goal of being well again so please pray for this to happen

‘And let us run with endurance the race God has set before us. We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith....... So take a new grip with your tired hands and strengthen your weak knees. Mark out a straight path for your feet so that those who are weak and lame will not fall but become strong.’ Hebrews 12: 2, 12-13

Our prayer is that as we continue to look to the Lord Jesus Christ, and intercede for Luke, that He will strengthen him and indeed all of us, both physically and spiritually, and enable us to live the life He always intended for us.

With our love

Gary and Debbie

GBS Update: Tuesday 8th June 2010

2010-06-08T10:00:00.000+01:00

Luke is looking so much more like Luke. His face really does seem to have fully returned to normal muscle movement; who would have thought a few months ago that we would be celebrating something so little, which now seems so massive! The physios plan yesterday was for him to have one hour on the ventilator followed by one hour off, throughout the day. He did this for six hours, i.e. 3 hours on and three hours off. But the third hour off coincided with him being in the stretch chair and taking a trip into the fresh air, after which he was very tired, so he called it a day then and was on the ventilator for the rest of the day. He said he feels like he is learning to read his body and pace himself, which is an answer to all of our prayers. The measure on the ventilator which was 8 but needs to reduce to 5 was put down to 6 for most of the day yesterday, which is big progress and Luke was pleased.

Luke yesterday recalled that he has had 74 days in ICU, and we were wondering how we could mark his 100th day if he is still resident somewhere in the hospital! In many ways it seems a very long time since he was first taken ill, and yet at the same time we cannot believe 10 ½ weeks have passed. God has been so faithful to all of us throughout this time, and when I woke this morning this song was ringing in my mind

This is how we know

This is how we know what love is

Just one look at Your cross

And this is where we see

This is where we see how love works

For You surrendered Your all

And this is how we know

That You have loved us first

This is where we chose

To love You in return

For You so loved the world

That You gave Your only Son

Love amazing, so divine

We will love You in return

For this life that You give

For this death that You have died

Love amazing, so divine

We will love You in reply, Lord

Please join with us in praying to the One who loves us more than any of us will truly realise in this life. Whatever he allows to take place in our lives, we can either embrace and learn from or try to escape from and reject His loving purposes. We don’t just want a comfortable life, but to live our lives in such a way as to bring glory to Him. Our prayer for today is that Luke will continue to strengthen, that he will get to the gym this week, and make progress in coming off the ventilator. But mostly, that he will know the Father heart of God ministering to him, and speaking to him about the plans He has for Luke’s life.

We give you our thanks and love for your partnering with us throughout

Gary and Debbie

GBS Update: Monday 7th June

2010-06-07T10:00:00.000+01:00

Luke Dictated 6.45pm 6/6/10

For me, this weekend has been one during which I have realised again just how far I have come on this journey. I have suddenly found myself feeling very out of place on the unit. Although I have always felt more well than I am, I now look around the unit at the people around me and I feel like the odd one out. There are people all around me with very serious conditions and they look the part. And although I am still ventilated and have limited movement, it almost feels like I shouldn’t be here. I guess this is a sign that both mentally and physically I am almost ready to get off the ventilator and get on with the next stage of my recovery.

Over the weekend I have seen a few improvements that should help bring me closer to the ward upstairs. By Sunday evening I had eaten numerous Marmite flatbreads by myself, picking them up from the bed and lifting them to my mouth unaided. And when reading the Sunday Times I found I was able to turn a page or two without help. The new range of movement I have in my left arm, as well as being useful, has been fascinating. I found myself sitting in my bed, as I do, on Saturday afternoon, and simply gazing at my thumb (I never realised how much dead skin had accumulated – another thing to look forward to getting rid of). I thank God for all of these improvements and thank you for all your prayers.

This week, I’m looking forward to getting to the gym for the first time and seeing my right arm catch up with my left. I’m hoping that when the physios consider making a plan for this week, that they will allow me to spend more time off the ventilator. It would be great if you could pray for all these things as you go through the week. Over the weekend I had a range of visitors who reminded me again of just how many people are going on this journey with us. Thank you so much.

With love

Luke x

GBS Update: Friday 4th June 2010

2010-06-04T10:00:00.001+01:00

Luke had a very good day yesterday. He had another trip outside in the stretch chair. The weather was beautiful, and he said it just felt great to be outside, and feel the fresh air on him. He also remarked on how bright it was compared with the ward. This time, he just had oxygen with him for his trache mask, carried by the physio, and he was wearing normal clothes! No monitors for BP, or pillow for his head etc, and as we all chatted outside he was leaning forward in his chair. This means that his body is strengthening as he can take the weight of his head, and lean forward and then backwards too! He really is beginning to look like ‘normal’!!! The physios have suggested that he may be able to go to the Gym next week for more exercises if he continues to improve at this rate. It would not be straightforward if he is still ventilated but possible. Luke likes this idea very much!

We really are grateful for your prayers, God has been so faithful to us all and we are seeing so much strength returning to Luke. So perhaps you could pray that Luke will improve steadily and that he would be able to go to the Gym next week. Seeing little improvements day by day really motivates him. He’s not making the progress he would like with breathing, but when he can feel he is improving in any way he’s happy.

‘As parents feel for their children, God feels for those who fear him. He knows us inside and out, keeps in mind that we're made of mud. Men and women don't live very long; like wildflowers they spring up and blossom, but a storm snuffs them out just as quickly, leaving nothing to show they were here. God's love, though, is ever and always, eternally present to all who fear him, making everything right for them and their children as they follow his Covenant ways and remember to do whatever he said.’ Psalm 103, The Message

We are all coming to the place of accepting God’s timing. We only see part of the picture, but as God works His purposes out for Luke and for us, He sees the bigger picture and really does work all things together for good in our lives. This is no longer just a belief, but we feel its practical outworking in our lives. He knows our frustrations at living this ‘parallel’ life; but we really do have so much to be thankful for, and as we trust Him day by day He gives us all we need for each day.

We will send the next e mail on Monday, to give you an update on the weekend. You are amazingly faithful and we thank you!

With our love,

Gary and Debbie

GBS Update: Thursday 3rd June 2010

2010-06-03T10:00:00.001+01:00

We just want to thank you for your prayers and your amazing ‘stick ability’ with us! We really know your hearts for our boy, and God holding us and continuing to strengthen us as we go from day to day. Luke had a very good day yesterday. He had two dear friends from Uni visit and his granddad from Liverpool travelled down too, and with Ben popping in after work it was a very full day. He is taking the weaning off the ventilator slowly, and is going to space the periods off the ventilator out into shorter slots throughout the day, ranging for half to one hour at a time for the moment.

Thank you for praying for his breathing, it is getting there slowly. Yesterday however, he saw huge strides in moving his left arm. He found he was able to lift his lower arm from the bed up towards his face and by teatime could hold, quite precariously(!) a mini digestive biscuit and lift it to his mouth and feed himself. His arm is wobbly and it was quite amusing, but we felt like dancing, and he showed off this trick a couple of times to whoever was passing, until his arm grew tired! We do wonder if he will end up with his arms being usable, before coming off the vent, which would mean that as he goes up on to the ward he wouldn’t feel so vulnerable, but would be able to read, use the remote etc. His right arm too, he can lift off the bed but only a couple of inches. He said he can’t believe how much movement is coming back, and it is quite amazing to witness!

We do know that God knows better than us (thankfully!) and whilst we felt, and were being told that the breathing was most important, it may be that God is answering what Luke has always wanted deep down, which is movement in his arms before he goes up onto the ward!

So please pray with us today

1 Thank God so much that he knows us so intimately, and even those longings that often lay at the back of our minds, He knows about and cares about, i.e. Luke’s arms

2 For Luke to continue to have hope for the future, and to see encouragements day by day, in movement and breathing

3 Please pray as you feel led to, who knows the mind of God? His ways are so much better than ours

‘Can you solve the mysteries of God? Can you discover everything about the Almighty? Such knowledge is higher than the heavens—and who are you? It is deeper than the underworld, what do you know? It is broader than the earth and wider than the sea.’ Job 11:7-9

Thank you for continuing to intercede with us for our son, we know God holds him in His hands. His plans are to do Luke good and bless him

With much love and many thanks

Gary and Debbie

GBS Update: Wednesday 2nd June 2010

2010-06-02T10:00:00.001+01:00

Luke has had two very tiring days. Yesterday he had a session in the stretch chair, and two one hour sessions off the ventilator. He was aiming at four, but was shattered after the second session. He had a fluctuating temperature and lots of sputum on his chest, so they have taken a sample of sputum, took blood samples and also took an x ray of his chest, to check for any signs of infection. This second time around of trying to wean him off the ventilator is proving to be long and arduous for him. It would seem that the relapse a few weeks ago has really had a negative effect on his lung strength and it is taking time to regain it.

He feels the pressure of expectation by the medical staff that he needs to be transferred onto the ward ASAP, but they cannot transfer him until he is off the ventilator. And yet there is nothing he can actually do to hurry it along!

We know we’ve asked on many occasions for prayer for his breathing, but we press on and ask for more. God is the God of the breakthrough and we would ask all of you to cry out to God with us to breakthrough in Luke’s breathing. Without a miracle this looks like it could take weeks if not months just to come off the ventilator. We are all weary, but especially Luke physically. In himself, he believes as we do, that if God is delaying then He has purposes in it, yet our deep longing is that God will bring a significant measure of healing soon.

‘Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.’ 2 Corinthians 4:13-18 We look to Jesus, our wonderful Saviour, who is the only One who can give us peace in our hearts in the midst of adversity.

With our love and grateful thanks for continuing with us.

Gary and Debbie

GBS Update: Tuesday 1st June 2010

2010-06-01T10:00:00.002+01:00

Thank you to everyone for praying for Luke over the weekend. He had a good weekend, and enjoyed visits from family and close friends. His limbs seem to be gaining in strength all the time, although he still cannot lift anything off the bed! He was told by the Physios overseeing his care at the weekend, that they thought it would be good for Luke to come up with his own timetable for weaning off the ventilator, with the aim of being off the ventilator all day by the end of this week, but still on it at night. We thought this was amazing as they had no idea that Luke had specifically asked you to pray for his sluggish lungs! Yesterday he had a session in the stretch chair, which is always a form of exercise for him, plus one two and a half hour session and a two hour session off the ventilator with the trache mask. This is big progress from last week, when he was having four sessions of 5 minutes a day.

He was, however, very tired last night when we left him, and his blood pressure was low. Whilst we desperately want Luke to be weaned off the ventilator ASAP, our concern is that he doesn’t overdo it and have another relapse. We feel the tension of being in faith for miraculous healing, which we know our God could bring about at any time, whilst at the same time seeing the reality of lungs that are still weak, and the knowledge that sometimes God delays longer than we would like. Luke had several visitors over the weekend, who hadn’t seen him for 2 or 3 weeks, and they were amazed at the difference in him! So our prayer requests for today are centred on thanking our Mighty God for all He’s done so far and continuing to look to Him for healing

1 Thank Jesus so much for the obvious outworking of healing in Luke’s body so far.

2 Please pray for Luke’s lungs to go from strength to strength, that God would pour His healing power into his lungs especially. That God would completely protect Luke from any further relapses.

3 For wisdom for the medical team overseeing Luke, that they wouldn’t push him too hard or too slowly, but that the weaning plan would be paced just right for Luke’s body.

4 For Luke to continue to have goals for the future that are achievable for him and encouraging to him, and that God would continue to give him grace and patience.

‘Against all hope, Abraham in hope believed and so became the father of many nations, just as it had been said to him, "So shall your offspring be." Without weakening in his faith, he faced the fact that his body was as good as dead—since he was about a hundred years old—and that Sarah's womb was also dead. Yet he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what he had promised.’ Romans 4:18-21

God has given us so many promises over Luke’s life and we are fully persuaded that He has the power to do what He has promised! Luke’s body is weak, but He is mighty, and we continue to look to Him and trust Him. Thank you for continuing to stand with us.

With our love,

Gary and Debbie

GBS Update: Friday 28th May 2010

2010-05-28T10:00:00.000+01:00

From Luke Dictated 7pm 27/5/10

It’s strange writing an e mail, which I know reaches many people who I have not even met. The amazing thing about the last few months is that as my parents have kept you all up to date on my condition, we have known the powerful effect of all your prayers whether I have met you in the past or not.

We decided that I would write today’s update with a specific focus in my mind for this bank holiday weekend. So the next update we plan to send will be on Tuesday, unless there is any significant news to report between now and then of course. Our hope is that as we all join together to focus our prayers on this one critical area, that there will be significant improvements to report back to you in the days ahead.

I’d like to ask you all to pray for my breathing. I remember in the early days of being ventilated my lungs fighting the ventilator. It was a real challenge to ‘let go’ of my breathing and allow the machine to take care of it, although it was a great blessing all the time my physical condition was worsening and I was increasingly losing movement in my body. In the same way that it was a fight to get on to the ventilator, it’s similarly proving to be a fight to get off it. As one consultant said to me this week, if it weren’t for the fact that I was ventilated I could easily be cared for at home. Although he was exaggerating slightly, by putting it this way he helped me to understand that getting off the ventilator is the next crucial step in my journey, something you already know from mum’s last e mail.

I thought it might be helpful for you in praying about this if I outlined the steps that need to happen in order for me to breathe by myself.

Firstly, the pressure of airflow that the ventilator gives me in each breath will need to be reduced from 8 to 5. While the pressure is being reduced they will gradually be increasing the amount of time I spend off the ventilator with a speaking valve and trache mask (which pumps a light flow of a small amount of oxygen through the trache opening.) At the moment I’m having this 4 times a day for 5-10 minutes each time. I will need to be confident/comfortable breathing without the ventilator before they put me on a trache mask 24 hours a day. Assuming I’m comfortable breathing like this, I will then be able to try breathing on my own completely with the trache opening shut. Once I reach this stage I am ‘ward able’ and will travel up a couple of floors to be monitored before I move onto the next stage which is rehab.

The more I have thought about this process, the more mini milestones I think of such as things I’d like to do and events I’d like to be able to attend. These have given me a fresh motivation to pray all the more for my breathing and to work hard at it.

I feel like I have received so much through your prayers and kind actions already that it feels cheeky to ask for more, and I wouldn’t if I didn’t believe that prayer works. We have already seen so many wonderful answers to prayer and so this weekend please join with us in praying your socks off for my sluggish lungs, knowing that as we see our prayers answered God will be glorified.

Thank you my friends (and those I don’t know – I now count you as friends) Your prayers are upholding us day by day and this is turning out to be quite an adventure!

With much love,

Luke x

GBS Update: Thursday 27th May 2010

2010-05-27T10:00:00.000+01:00

We just wanted to start by thanking everyone for all your support, care, and of course prayers over that last couple of months. God has put an army around us, to pray for us and also help practically. Thank you so much for the wonderful meals which keep coming, and the ‘ironers’ who help make life at home tick over much more easily. We’re looking forward to the day when we have more time at home and will be able to fully function, including doing the ironing...... never thought I’d say that!! But that day will come we know.

Yesterday brought more good news in that Luke is now able to move his left arm in the same way as his right! So, from resting them on his chest he can raise both arms and lay them flat on the bed. His hands hang limp still, but it’s the beginning of what we’ve been praying for, namely use of his arms, hands and fingers. His observations are now done on a much less regular basis throughout the day, and the doctors decided yesterday that they only need take blood from him for tests every two weeks. Luke was delighted as the term ‘trying to get blood out of a stone’ was coined for Luke we think. They have had great difficulty extracting blood from him!

It would be good to concentrate our prayers today in asking God for the strengthening of Luke generally, but in particular his breathing. It really feels like a waiting game, in terms of Luke being well enough and his breathing strong enough to come off the ventilator. His next stage of recovery all hinges around being off the ventilator. He is very patient in this and accepts that it is a process that will take time. As for us, we are rather impatient. We long to see him moving forwards and so maybe we could ask you to pray for grace and patience for us in this too. A friend used to wear a badge that said ‘Lord, give me patience, I want it NOW!’ It feels a bit like that for us, but we know that patience is something God grows in us, especially by taking us through situations like this that take time!

‘But do not forget this one thing, dear friends: With the Lord a day is like a thousand years, and a thousand years are like a day. The Lord is not slow in keeping his promise, as some understand slowness. He is patient with you, not wanting anyone to perish, but everyone to come to repentance.’ 2 Peter 3: 8-9

We know that God stands outside of time and His timing is perfect, so we do trust Him to bring Luke’s healing about just at the right time!

With much love,

Gary and Debbie

GBS Update: Wednesday 26th May 2010

2010-05-26T10:00:00.000+01:00

The event to celebrate from yesterday was Luke being able to lift his right arm! When I came back in to see him, after him being turned in the afternoon, he asked me to lay his right arm across his chest. From there he lifted his arm out to the right, with his elbow on the bed, and dropped it down onto the bed! He cannot lift it from flat on the bed, but from the elevated position of it being laid on his chest he can lift and lower his right arm. It was so heartening and very moving – it felt like a new party piece, and he showed everyone who came along! His hand is floppy at the end of his wrist, but when he showed the physio last night, she said they will get him splints to keep his wrist in shape, and this will enable him to grip more easily. This really feels like a sign of things to come, so thank you from our hearts to you and to our Mighty God.

Luke is now tube free from anywhere in his body, and all is functioning well! The only intrusion into him is the tracheostomy. He says that he is feeling so much more normal as a result. He had a couple of sessions of 5 minutes off the ventilator with the speaking valve yesterday and sat in the stretch chair for about 20 minutes too. Even these small amounts of exercise will help to strengthen his lungs, so even though he is back on the ventilator pretty well 24 hours a day, they are still in the process of strengthening him, but in other ways.

Please continue to pray with us for more healing for Luke

1 For the returning strength, in his arms especially, to increase. Luke’s dearest wish is to be able to use his arms, before he comes off the ventilator and goes up on to the ward

2 His legs felt very tingly yesterday, please pray for this to be the start of the return of movement to his legs and feet. He still has no movement in his toes.

3 For God to continue to use this time to speak out His heart for Luke and His direction for the future to him

Right at the beginning Gary said to me ‘We’ve had 27 wonderful years together. Why shouldn’t we face trials?’ No one is immune from difficulties in life, and we cannot choose whether or not we will face them. But we can choose to turn our faces to God in them and learn from Him all that He would teach us.

‘We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.’ Romans 5: 3-5

With our greatest love and thanks,

Gary and Debbie

GBS Update: Tuesday 25th May 2010

2010-05-25T10:00:00.000+01:00

We received an e mail yesterday from our friend Anne, whom we stayed with in Sheffield. She was commenting on the photos from the weekend, saying how great it was to see Luke smile, something he couldn’t do when she last saw him five and a bit weeks ago. It was a timely reminder of the progress Luke has made. It feels as though we are in a bit of a lull, progress wise, so it is good to be reminded of just how far Luke has come. There was a time when his face was expressionless and he was pretty well fully paralysed. Now, he can smile, eat and speak and hold his head up and has quite good movement in his arms even though he can’t lift them. The Neurologist visited yesterday and said that some of his arm muscles score 4/5, 5 being normal. Luke said yesterday that he feels his body is becoming so much stronger, even though the outward signs, i.e. movements, are not there yet! These are real answers to prayer, so thank you for continuing to pray with us to our wonderful God. We remember reading once the comment that ‘Whilst God is never late in answering our prayers, we’ve found that He’s seldom early!’ We believe that God is bringing about His healing for Luke, in His perfect timing, hard as it may be to wait.

Please pray with us today

1 For us to remember how far Luke has come and for grace and patience for us all

2 For Luke to daily know His strength, and for Luke’s strength to increase as he waits on Him

3 For God to be preparing Luke for the next steps of his journey, i.e. coming off the ventilator, up onto the ward and then on to rehab.

‘The grace of God upon my life

Is not dependent upon me

On what I have done or deserved

But a gift of mercy from God

Which has been given unto me

Because of His love, His love for me.

It is unending, unfailing, unlimited, unmerited

The grace of God given unto me

It is unending, unfailing, unlimited, unmerited

The grace of God given unto me.’

We actually deserve nothing from God, and yet He loves us passionately, and has the very best in mind for us as a family. We know we can trust Him.

With love,

Gary and Debbie

GBS Update: Monday 24th May 2010

2010-05-24T10:00:00.000+01:00

We are well into the ninth week of our journey and what a long way Luke has come. He had a very enjoyable weekend, with a trip outside on both Saturday and Sunday, and family from Sussex visiting on both days. He was very tired afterwards, but you could see him enjoying the feel of being outside and a sense of normality. He continues to be very bright, and when we left last night, there was lots of laughter coming from his bed space as he bantered with the nurses. Friendships are very important to Luke and he makes friends wherever he goes!

He is very aware of so many of you praying for him, and humbled and heartened too as we are, that you continue to walk with us and pray. We would like to ask you to pray with us today

1 Thank God so much for the evident steps forward, that He holds Luke and protects him and is in the process of healing him

2 For Luke to go from strength to strength in becoming more mobile, not just in the stretch chair, but that he will start to see big strides in his ability to move, especially in his arms, hands and fingers

3 For his circulation as he starts to be able to sit up for longer periods. His feet go quite blue, and he seems to be left with some redness in both feet but especially his right one. Please pray that as his body starts to adapt to a more vertical posture his circulation would work well too

4 For him to continue to have a positive fighting spirit. He works hard during physio and during the day generally we try and do some stretches. Luke is keen to get moving! Please pray that God will continue to give him things to aim for in terms of goals etc

‘Ah, Sovereign LORD, you have made the heavens and the earth by your great power and outstretched arm. Nothing is too hard for you.’ Jeremiah 32:17

GBS Update: Sunday 23rd May 2010

2010-05-23T10:00:00.005+01:00

From Luke, Dictated 7pm 22/5/10

What a beautiful day we had today. I know because I could see the sun shining on the concrete pillars through the dirty window next to my bed. I had thought that would be the only way I would be able to tell how nice it was outside until this morning. The sister in charge burst into my bed space to inform me that today we were going on a trip! So, after enjoying some time with family over from Sussex I was moved to the stretch chair and escorted outside by three members of staff and a trolley full of ventilation equipment. Naturally, we were met outside by the paparazzi eager to catch a glimpse of Luke catching his first rays since getting ill! (See attached photos) We were outside for about 15 minutes and although it wasn’t the day at the seaside I might have had were I well it was enough to make me very happy as it gave me a taste of real life after hospital!

To all of you who have prayed for stability in my breathing, increased movement and brightening of mood, I thank you so very much. I think you will agree that there has been a lot of progress in just one week. Let’s thank God for all of this and I invite you to continue to ask for more signs of improvement over the coming week.

With my love and thanks to you all,

Luke x

GBS Update: Saturday 22nd May 2010

2010-05-22T10:00:00.000+01:00

Thank you so much for praying for our boy yesterday. When I arrived he was quiet, but not down. He’d had a good morning, and has decided to ask the nurse every night to wake him in the morning, and put his cuff down on the trache so that he is able to speak straight away. This had happened yesterday, and the sister who was looking after him was very attentive. As the day progressed he became more and more upbeat, and when we left him he was smiling broadly and joking with the nurses. He told us he felt much better and it was evident. It felt like we could see the impact of your prayers as the day wore on. One of the nurses told him that she thinks they sometimes get a bit blasé about him, because he is so well for a patient on ICU/HDU, i.e. he can talk and eat and is normally so bright.

The physio who saw him last night, and hasn’t seen him for about 10 days, told him that she can see massive improvement. She could see/feel movement in his gluts, quads, hamstrings, hips and abs. When working with gravity, he can move his arms quite a lot too, but his hands feel like lead weights at the end of his arms. He had two sessions of five minutes off the ventilator with the speaking valve. His breathing is still not where it was, but the physio told him that his respiratory muscles are being exercised by them and are improving all the time, which will be a great help to his breathing.

Yesterday was such a better day for him, and the only difference was your prayers specifically for God to strengthen and encourage him, and to give him hope. A friend wrote to us yesterday about us being carried by the prayers of others, and we know it to be true. We are so glad we do not face this alone – thank you every one of you!

We expect Luke will want to write to you tonight, but for today please pray more of the same for Luke. That he will continue to grow stronger, not only physically, but mentally, emotionally and spiritually too. That God will guard his heart and mind in Christ Jesus as He has promised to. We are absolutely certain that God is growing things in Luke at this time that will have lasting consequences; please pray that what Luke learns will be used by God in the present and the future, to bring great glory to Himself.

In every circumstance of life

You are with me, glorious Father.

And I have put my trust in You,

That I may know the glorious hope

To which I’m called.

And by the power that works in me,

You’ve raised me up and set me free;

And now in every circumstance

I’ll prove Your love without a doubt,

Your joy shall be my strength,

Your joy shall be my strength.

We have sung this over many years, and it is as true today as it ever was.

With our love,

Gary and Debbie

GBS Update: Friday 21st May 2010

2010-05-21T10:00:00.000+01:00

This comes with our thanks once again, but rather than give you a list about what to pray, to ask you to basically pray one thing today.

Luke had a low day yesterday. It didn’t start well, as when he woke there was no nurse around. He had slept with the cuff on the trache up, which meant he couldn’t speak, he didn’t have his glasses on so couldn’t see well (he is very short sighted) and obviously couldn’t move. He was left like this for what felt like a long period of time, and when a nurse did appear, she told him that his nurse for the day had had to go and work on a ward upstairs. He asked who was looking after him, and the nurse said she had no idea. On reflection, and when he was wider awake, he said she was probably joking, but because he didn’t have his glasses on, he couldn’t see her expression and said he just felt really vulnerable, wondering who was going to look after him that day. His nurse did return later and the day eventually proceeded but because of this delayed start to the day, he had only just been washed and had breakfast when I arrived at 11.30am, and was feeling quite low.

In the cold light of day, he could understand what happened, but what this highlights is just how vulnerable Luke can feel at times, and how much he is reliant on others for absolutely everything, even having a voice in the mornings and the ability to see! He says that if he knows he is getting better, and feels comfortable, then he is happy but yesterday that did not happen.

So we’d like to ask you all to pray for Luke today to know God’s strength, courage, comfort, love and peace on him all day. Please ask God to give him hope for the future too, we know He will because that is what He has promised us in the bible.

Many of you have asked how we as a family are doing, thank you so much for your care. Family life has been put on hold for the time being as we are all spending much of our time at the hospital or at work. Gary is back at work, visiting Luke every night, and some lunchtimes, but is finding it very hard to engage with work. I leave here every day at about 11.15am and return at about 8.30pm, and my day consists mainly of being with Luke on the ward and waiting outside whilst they turn him etc. I feed him, we chat, read, listen to music, do some stretches, pray......Ben and Joel have been fantastic, but life is hard for them both, as they are often here alone.

We all long for the day when life returns to some normality and know that without God this would be a completely hopeless path to walk.....

‘But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.’ 2 Cor 12:9 In and of ourselves we cannot do this, BUT we know God strengthening us every day. We pray that this walk for us as a family will bring great glory to Him, who is able to do immeasurably more than we can ask or imagine.

With our love

Gary and Debbie

GBS Update: Thursday 20th May 2010

2010-05-20T10:00:00.000+01:00

Luke had a good night’s sleep and when I arrived yesterday was looking much brighter. The physios are pleased with his increase in movement in his arms and say that the movement in his knees is coming from his quads and not just from the hips, which Luke is delighted with. His abs are also beginning to show signs of strength, so all over he can see very small movements which indicate new life in his nervous system, praise God! With his palm of his hand facing down he was able, with great effort, to flip his wrist over so that the back of his hand was lying on the bed. He only managed to do it the one time, and only his left hand but that felt like a bit of a milestone.

We spoke to the Consultant Neuro Anaesthetist who is looking after Luke last night, and he told us that Luke’s wee output is absolutely nothing to worry about. It was the junior doctor yesterday, who was concerned, and told us that Neurological patients can get another type of syndrome, that affects the brain and tells it to excrete excessively, which was why she was ordering these tests, and she was very urgent about them. The Neurologist was also concerned, but the tests came back fine and Luke’s Consultant reassured us that he was not in the least concerned, but felt with Luke’s stage of recovery and the amount he was drinking his output was perfectly OK.

What a roller coaster! We are so grateful that God has put around us an army of pray-ers, and thank you for your ongoing messages and encouragements. They are so heartening when the road takes an unexpected twist or turn, and always help us to keep looking to Jesus. We are sorry that we don’t get a chance to reply to most, but we do read every one and they mean so much.

Please pray with us today

1 Thank God so much for His protection of Luke, and for the very real progress we have seen so far especially the increases in movement throughout Luke’s body

2 For Luke’s weaning off the ventilator to progress. He’s almost back to where he was last Thursday, but they haven’t yet restarted periods of time off the ventilator, please pray for this to happen at the right pace

3 That Luke will see, day after day, movement returning throughout his body, but especially to his arms, hands and fingers, in readiness for his move to the ward

4 For God’s continued presence with Luke, that Luke would hear His still small voice with clarity and constantly know God’s passionate heart towards him

‘Trust in the LORD and do good. Then you will live safely in the land and prosper. Take delight in the LORD, and He will give you your heart’s desires. Commit everything you do to the LORD. Trust Him and He will help you.’ Psalm 37: 3-5

In a situation like this, everything is out of our control. We cannot make anything happen. The only choice of will we have is whether we will trust God or not. Our experience over the years has shown us that God is ALWAYS faithful and that there is no safer place to be than in His hands. We do love and trust Him.

With our love

Gary and Debbie

GBS Update: Wednesday 19th May 2010

2010-05-19T10:00:00.000+01:00

Luke was still very tired when I arrived yesterday. The ventilator oxygen level remains at 28% which is good, but the other two levels are still higher than they were last week. Earlier in the morning they had lowered them to their original level, but Luke was becoming tired so they increased them again. They have also realised that Luke’s urine output is more than it should be. On Tuesday he passed 2 litres more than he took in. This is worrying and they are in the process of doing blood and urine tests to find out the cause. They increased his input yesterday, but he was still consistently wee-ing considerably more than he was drinking.

On the positive side Luke is pleased that he is seeing some increased movement in his arms, which is what he really wants to see before he comes off the ventilator. The physio showed us some stretches that we can do throughout the day with him. He continues to eat well, but we are all concerned about his kidneys.

Thank you for continuing to pray with us. We know that God is more than able and hears every prayer, so please pray today

1 For Luke’s kidneys to function healthily in particular that his output would correspond to his input, and that there wouldn’t be any long term health issues here

2 For his breathing to strengthen considerably, especially for his lungs and diaphragm

3 Continue to pray for his arms, hands and fingers to strengthen

4 For him to remain optimistic and to see a general upward trend in his healing, i.e. return to good day after good day

5 For Luke’s complete healing

6 That Luke would continue to see God’s purposes and ways in this and His amazing heart for him

It was really difficult yesterday going in to hear of another issue rearing its head. Sometimes it’s hard to see the big picture, BUT we know the One who does. And we know that He is faithful and good and that even when we can’t see the road ahead, He marks the path before us and has promised never to leave us or forsake us.

‘Yet this I call to mind and therefore I have hope: Because of the LORD's great love we are not consumed, for His compassions never fail. They are new every morning; great is Your faithfulness.’ Lamentations 3: 21-23

With greatest love and thanks

Gary and Debbie

GBS Update: Tuesday 18th May 2010

2010-05-18T10:00:00.001+01:00

Thank you for running this race alongside us, and partnering with us in prayer. We apologise for the frequency of these mails if it feels like overload, but Luke’s situation feels just as acute to us today as it was when he was taken ill in March, and our need of God and His intervention is just as great. It is really helpful for us to reflect on each day, to think about what specifically needs healing and bring it all back to the One who can and does heal today.

The ventilator levels are almost back to where they were, and Luke was very bright yesterday. He does, however, tire very quickly and needs to regain strength. The main aim of the medical team at the moment is to get Luke back to where he was last week in terms of breathing and then to restart the weaning off the ventilator. This means his move to the ward is unlikely to happen this week. Luke is not discouraged by this, but sees it as having extra time for his upper body to strengthen and in particular for the use of his arms, hand and fingers to increase, before he is on the general ward. He amazes us with his attitude and humour, living with a body that doesn’t move!

Please pray with us

1 Thank God so much for protecting Luke, for holding him and for enabling Luke to know that God’s grace is sufficient for him, because His strength is made perfect in Luke’s weakness.

2 For GBS to recede and leave Luke’s body, and for its effects to be eradicated.

3 That we would continue to see improvement day after day, that God would protect him from ‘blips’!

4 For strength and grace for all of us as we run this race, that we would have open hearts to learn well the things God wants to show us through this.

‘Strength will rise as we wait upon the Lord, we will wait upon the Lord

Our God You reign forever, our Hope, our Strong Deliverer

You are the everlasting God, the everlasting God, You do not faint You won’t grow weary

You’re the defender of the weak, You comfort those in need

You lift us up on wings like eagles.’

We may grow weary but He never will, we know Him sustaining us day by day. We know our God defending us, comforting us and enabling us to walk paths that we never thought possible. Who is there like Him?

With our love,

Gary and Debbie

GBS Update: Monday 17th May 2010

2010-05-17T10:00:00.000+01:00

Luke was looking much more his usual self when we went in yesterday. The ventilator oxygen levels were back down to 28% and the two other measures they use were almost back to where they were too, prior to this blip. He was in very good spirits, and could see some increased movement in his forefingers. He has also started to be able to move his legs slightly from side to side from the hip, and noticed yesterday that there is slight movement actually in his knees. These are all tiny things, but lead to huge celebration for him and us. So although we are aware, especially after the weekend that he is still very reliant on the ventilator to breathe, he is seeing improvement in his physical strength every day. His nurse yesterday told us that she has nursed many patients with GBS and that Luke’s progress is very rapid, compared to those she has nursed before. We told her that he has thousands of people praying for him, and she remarked, ‘Well, their prayers are obviously working!’

The prayer requests today are really the same as Luke gave you yesterday

• That he would get to the point of breathing by himself, and that the medical team would pace it well

• That he would get back movement in his arms, hands and fingers very soon

• For continued regular bowel movements

• For God to continue to renew Luke’s strength, physically and spiritually, day by day

When you walk a path like this, it makes you realise in increasing measure how fragile you are and how big God is. He really does hold us in the palm of His hand, and we can trust Him to work all things together for good in our lives.

‘…..the LORD will display his glory, the splendour of our God. With this news, strengthen those who have tired hands, and encourage those who have weak knees. Say to those with fearful hearts, “Be strong, and do not fear, for your God is coming to destroy your enemies. He is coming to save you.” Isaiah 35: 2-4

We so thank you for praying with us. We know God with us today, and trust Him for the future

With our love,

Gary and Debbie

GBS Update: Sunday 16th May 2010

2010-05-16T10:00:00.001+01:00

Dictated Saturday 7.30pm

Thank you so much for your prayers over the last 24 hours. In trying to help me get better as soon as possible, the doctors realised they had pushed me too far in their eagerness to see me recover. Thankfully, the effects of this come purely down to exhaustion and I’ve spent the last 24 hours resting and being gradually weaned down to the level of ventilation support I was receiving before Friday. Knowing there were people fighting by my side was a huge comfort and I’m pleased to say that they’ve not had to stick any more tubes into my nose or veins. I know you will be thrilled to hear that we have started to see some success on the bowel front!! I don’t think, before getting GBS, that I could ever have conceived of a situation where I would be sharing my bowel movements with thousands of people, but I really do appreciate your prayers and they have been answered. Please pray for more!!

My next big goal is to get moved up 3 floors to the Stanley Graveson Ward, which will be where my next stage of treatment happens. Today I’d like to ask you to pray for all the things that need to happen for me to get there. As you know the ability to breathe without the assistance of the ventilator is the most important factor. Please pray that my weaning off the ventilator would happen at the appropriate rate, not too slow or too fast as either leads to a lot of frustration. As the doctors have been saying over the last couple of days, my progress so far has been at an impressive rate but we know that God is willing and able to heal and bring recovery far more quickly than we expect. The other factor that is very important to me before being moved is full use of my arms, hands and fingers. This will make life a lot easier for me on the ward and will help me to be more independent. I’d really appreciate your prayers for this too.

Finally, another massive thank you to everyone who has sent cards, letters and e mails. They make such a difference to life in hospital. Over the last 7 weeks I have heard from my closest friends and people I’ve never met. It is these messages of support which serve as a constant reminder to me that whatever happens I’m being held in the Everlasting Arms, and we often re-visit old messages to remind ourselves how much God has done already. As you join with me in prayer, let’s continue to trust Him for all He will do.

With all my love Luke x

GBS Update: Saturday 15th May 2010

2010-05-15T10:00:00.000+01:00

Luke was very tired when we visited in the morning yesterday. As the day went on his levels of oxygen in his blood were dropping, and by late afternoon the doctors were concerned that his right lung was not inflating properly. An x-ray was taken to ascertain whether he had a collapsed lung or not. We were able to ask some of you to pray. They think he may have had pockets of sputum in the lung, which were causing it to not inflate properly, but there was no sign that the lung had collapsed, praise God. They put him back on the ventilator and upped the level of oxygen from 28% to 80 %. They also increased significantly the rate at which the ventilator was pumping oxygen. This started to raise his oxygen levels again.

We spoke with the Consultant, and she told us that she thinks they were over confident in trying to wean Luke off the ventilator on Thursday. He had been on the trache mask and speaking valve for around 14 hours. She told us that Luke had been doing so unusually well for a GBS patient that they had overestimated his ability to breathe.

This feels like a step backwards, but she tells us it is normal for GBS, and that what is unusual is that Luke has had not bad days for many weeks. Luke is now on the ventilator with the cuff up, which means he cannot speak or eat/drink. If his breathing does not improve they will have to reinsert the feeding tube and put him back on IV fluids.

This is hugely frustrating for all of us, most of all Luke, and he feels quite cross, that they ‘pushed’ him not only to the limit of his ability to breathe, but over it, and now he’s back on ventilation. The Consultant says that this is a ‘blip.’

Please pray two things

1 That Luke’s body, in particular his lungs, will recover well and that he will be able to not just be back to where he was a couple of days ago in terms of breathing, but better, and that this will not delay his progress in any way. Please continue to pray that he will have good day after good day.

2 That God will comfort him, hold him, encourage him and love him during this unexpected turn of events. It may be a surprise to us, but God knew about it before we did and is just as able to heal Luke now as he was days ago.

When the nurse was booking the x ray she had to look back to see when he last had an x ray. The last one was 23 April, which amazed her and she said ‘It’s because he’s only had good days since then.’ This is because of our wonderful God, and yesterday feels like a real attack on Luke’s upward progression of healing. We are sad for our boy having to continue to endure, but we trust the One who made him to bring him to a place of wholeness and restoration.

‘The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge......He reached down from on high and took hold of me; he drew me out of deep waters. He rescued me from my powerful enemy, from my foes, who were too strong for me. They confronted me in the day of my disaster, but the Lord was my support. He brought me into a spacious place; He rescued me because He delighted in me.’ Psalm 18

We so appreciate you, thank you for caring and praying with us to our Mighty God

With our love,

Gary and Debbie

GBS Update: Friday 14th May 2010

2010-05-14T10:00:00.001+01:00

Luke had an eventful day yesterday. His bowel has started to move, and the pain is much less than on the two previous days, so thank you so much for your prayers. He looked brighter and was obviously feeling more comfortable. When the Consultant did his round he told Luke that they are anticipating him being off the ventilator and moved onto the Neuro ward early next week! In preparation for this they moved Luke across the corridor from ICU to HDU yesterday afternoon. On HDU one nurse cares for two patients as opposed to one to one care on ICU, so this will help him get used to a general ward. When we left last night, he had spent eight and a half hours off the ventilator with the speaking valve - what an amazing acceleration in healing! He also spent a good 40 minutes sitting up in the chair/bed, and had two sessions of physio. He had several short visits too, so his day was full.

The Consultant told us yesterday that Luke’s progress was unusual for GBS, as the return of movement usually precedes being off the ventilator. In Luke’s case his breathing has returned at a rapid rate, and movement is still to come. We believe it is no coincidence that we have asked you all to pray with us specifically, for his breathing, and God has answered that prayer! The Consultant also told us that we should write off this year, expecting Luke’s recovery to take to the end of the year. We would love God to continue to confound the medics and bring a rapid and total restoration for our son.

So thank you from our hearts, we have a wonderful God who heals today, so let’s keep believing for God’s intervention in this whole process

1 Please pray that Luke would adapt well to the progress he is making, and not feel too vulnerable but actually enjoy being well enough not to need one to one care.

2 For continued progress in bowel movements, and that his bowel would function well on an ongoing basis.

3 For Luke to totally come off the ventilator as anticipated by early next week.

4 For God’s sovereign healing in Luke’s body, for GBS to go, and for normal functioning of his immune system and nervous system to return.

5 For Luke to know God near, every step of the way. Staff may change and surroundings may change, but God has promised never to leave him or abandon him.

I’m reminded of a worship song that we’ve sung for many years:

‘I stand amazed when I realise Your love for me is beyond all measure.

O Lord, I can’t deny Your love for me is great.

It’s as high, high as the heavens above; such is the depth of Your love

Toward those who fear You.

O Lord, far as the east is from west, You have removed my transgressions.

You make my life brand new: Father, I love You.

Your love is higher, high as the heavens.

Your love is deeper, deeper than the deepest ocean.

Your love is stronger, stronger than the powers of darkness.

Your love is sweeter, sweeter than wine.’

Who can understand the depth of God’s love for us? Who are we that He should care for us, let alone respond to our prayers? Let’s continue to look to Jesus whose love for us is greater than we can ever comprehend!

With very much love,

Gary and Debbie

GBS Update: Thursday 13th May 2010

2010-05-13T10:00:00.000+01:00

We were reflecting this morning over a cup of tea, on how far Luke has come. Four weeks ago we were told by the Consultant in Sheffield that Luke could be on the ventilator for up to a year, possibly even 18 months, given the severity of his condition. Yesterday we were told that they think it will be days rather than weeks until he comes off the ventilator and is able to move out of ICU and onto a ward. Luke has been ventilated for just less than 6 weeks, so far. We were told 3 weeks ago, that he was in danger of being in the 10% who die from GBS, and that he would not have an upward progression in healing, but that it would be a case of good day, followed by bad day. It honestly feels like he has had good day after good day, and in terms of his recovery from GBS, and that there has been continuous movement forward. So there have been amazing answers to prayer, which are a major cause for celebration.

His bowel however is not! He has been in considerable pain, for the last 48 hours, and has a blockage in his back passage. We spoke to the hospital this morning and they say he slept reasonably well, but had still not passed anything. This is getting urgent now for Luke because of the huge discomfort it is causing him. It is also very frustrating as he is making such good progress in other areas and this feels to him like a huge distraction.

A real positive step forward yesterday was the fact that he spent 4 hours off the ventilator during the day, with the oxygen mask over his trache and the speaking valve. Only a few days ago he was struggling after 20 minutes or so, so this is massive improvement and contributes to them thinking it will only be days before he is off the ventilator.

Our heartfelt thanks once again for staying with us in this battle, please pray today

1 Urgently, for Luke’s bowel to function! He has been so courageous over the last 7 weeks, but was close to tears yesterday. The pain has moved from his tummy to his back passage, so please pray for a miraculous movement and healing!

2 Praise God for the rapid improvement in his breathing and that it will continue so that he may breathe without the ventilator.

3 Luke has asked that we pray for movement in his hands and arms. Whilst he wants his healing to progress, he is concerned about being on a normal ward, without one to one care, and still being unable to call for a nurse, turn on the TV/CD player etc. On ICU, he has a nurse at the end of his bed 24/7 so if he needs anything, they are able to assist. I think he’s concerned about being left, when he can’t use a buzzer to call the nurse etc.

4 For the peace of God on Luke, for courage in the pain, and for continued faith to see God work out His purposes and healing in Luke’s life.

‘O LORD, my heart is not proud, nor my eyes haughty; nor do I involve myself in great matters, or in things too difficult for me. Surely I have composed and quieted my soul; like a weaned child rests against his mother, my soul is like a weaned child within me. O Israel, hope in the LORD, from this time forth and forever.’ Psalm 131

We continue to look to Jesus and rest in Him. Only in Him can we find peace in our spirits and rest for our souls. We trust Him.

With love,

Gary and Debbie

GBS Update: Wednesday 12th May 2010

2010-05-12T10:00:00.000+01:00

Luke had a quiet day yesterday. He was quite tired after his outing on Monday, but he did manage the trache mask and speaking valve for over an hour, which is big progress in terms of his lungs. And he enjoyed a Burger King meal for tea - not something he often eats, but there is an outlet at the hospital and one of the nurses suggested he might like a bit of junk!

The main item on Luke’s agenda yesterday, however, was trying to go to the toilet. He was very uncomfortable for much of the day, with lots of contraction/spasm type pain in his stomach. This is probably partly due to his body getting used to real food, but is very painful for him. So painful in fact, that he is willing to forego the embarrassment and ask for you to pray for a successful bowel movement and for his digestive system, including the bowel to adapt to proper food and function well. It’s not easy when you are stuck in one place/position, your whole system gets sluggish. We also think that there may still be some paralysis in this area which means it makes it difficult for him to pass what he needs to. Sorry if it’s a bit early in the morning for such graphic info, but he’s desperate! They are giving him medication but not a lot has moved so far. Apart from the distraction of bowels, Luke feels good in himself, and his body is strengthening slowly.

Please pray

1 For Luke’s bowels to work properly, not just once, but in a continuous manner. That the pain/spasms would go, and that the enjoyment he gets from eating again would not be marred by badly functioning bowels.

2 That he would feel up to another trip today in the chair/bed around the hospital

3 That his breathing would continue to strengthen, especially for longer and longer periods of time off the ventilator.

4 That he would see marked improvement in movement of his whole body. We are grateful for small improvements, but long for more. Please continue to pray for complete healing.

5 That Luke would know Jesus close, even when or especially when, he’s in pain.

‘Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you. For everyone who asks, receives. Everyone who seeks finds. And to everyone who knocks, the door will be opened. You parents—if your children ask for a loaf of bread, do you give them a stone instead? Or if they ask for a fish, do you give them a snake? Of course not! So if you sinful people know how to give good gifts to your children, how much more will your heavenly Father give good gifts to those who ask Him.’ Matthew 7: 7-11

Let’s keep believing our Wonderful God for miracles for Luke. We have seen much progress so far. The bible tells us that our prayers are powerful and effective and we believe it. So let’s go for it in faith, believing that God will bring about the very best for Luke, He loves him far more even than we do!

With great love and thanks

Gary and Debbie

GBS Update: Tuesday 11th May 2010

2010-05-11T10:00:00.000+01:00

We send this with our thanks once again for accompanying us on this lengthy journey. We are so grateful for your love and most importantly, your prayers for Luke. He had another good day yesterday, and was off the ventilator with no assistance from the trache mask either, for 15 minutes and coped really well. In other words breathing totally by himself! This seemed like a huge step forward, and is what they will be seeking to increase in the coming days. And is a real answer to prayer!

In the afternoon he went for a ‘walkabout’ in his chair and met with us, and some family over from Sussex, for a cup of tea in the canteen! He had the oxygen mask over his trache and the monitors to record his oxygen levels, suction apparatus etc and the physio and nurse with him, but was able to enjoy a cup of tea and a chat with us!

When we left him in the evening he looked exhausted, but had enjoyed his first glimpses of life outside of ICU! We have seen so much answered prayer over recent weeks, so we hope it spurs you on to continue interceding for Luke with us, until we see him fully healed and restored.

Today’s prayer points

1 For Luke to go from strength to strength in terms of breathing by himself – that God would continue to strengthen his lungs and diaphragm

2 Please continue to pray for his bowel movements!

3 He had some sputum on his chest on Sunday evening and they were doing tests to check if he has an infection, please pray that he won’t have. Also, his throat has been a little sore, but last night was apparently his 4th night off the ventilator (I was one behind, I thought it was 3rd!) Luke thinks it’s to do with being on the trache mask for those consecutive nights. Please pray that this will calm down and return to normal

4 That there will be some significant movement returning to his body in general. He sees small movements almost on a daily basis, please pray for more!

5 That he will be able to enjoy more jaunts around the hospital and outside. He managed about half an hour yesterday, but it was very tiring

6 For God’s gracious heart for Luke to really penetrate Luke’s soul and spirit

‘Not to us, O Lord, not to us, but to Your Name be the glory, because of your love and faithfulness......The Lord remembers us and will bless us.....May you be blessed by the Lord, the Maker of heaven and earth.’ Psalm 115

We know God’s hand of blessing every day and it is to Him we give glory, because of His love and faithfulness, throughout every circumstance of life.

Much love and many thanks,

Gary and Debbie

GBS Update: Monday 10th May 2010

2010-05-10T10:00:00.000+01:00

Luke had another good day yesterday! Weekends are always quieter on the ward, so he didn’t sit up in the chair at all, but he had physio which he always enjoys. He has now had two nights off the ventilator all night with just the oxygen mask over his trache. This is a big achievement and is a positive step towards weaning him off the ventilator. The doctor told him yesterday that the next step is to increase the time off the ventilator during the day with the oxygen mask over his trache, but with the speaking valve fitted too. This is much harder work for Luke but needs to happen in increasing measure in order to be totally breathing by himself.

He is eating well and getting very hungry. The sister told him on Saturday that she has nursed for over 20 years and has never known a ventilated patient be well enough to eat! It really is a joy to see him progressing day after day, and it is amazing the things we get excited about; e.g. his cough is improving and his pucker too – all answers to specific prayer!

So, thank you for bearing with us in seeking God’s healing, and please pray

1 That Luke is able to be off the ventilator for longer and longer periods during the day and especially that he will be able to cope with using the speaking valve at the same time. That God would strengthen his lungs and diaphragm in increasing measure.

2 Please pray for wisdom for the medical team as they try to balance physio for strengthening his body, with weaning him off the ventilator. If he has sat up in the chair, or had stretches, he hasn’t been able to cope with being off the ventilator for more than a few minutes, as he is completely worn out. Please pray for the right balance, BUT at the same time for miraculous intervention from God, that Luke would see a leap in strength to breathe by himself.

3 For Luke’s bowel movements! He knows this is a bit embarrassing, but has asked it to be a prayer point as he is so uncomfortable and getting lots of tummy pain. Please pray for regular bowel movements and for the whole of his digestive system to work as it should, as it starts to adjust to real food.

4 For God’s constant presence and blessing on Luke; that this will be a time that he remembers in years to come for all the right reasons – that Luke will fulfil all that God has for him.

My heart will sing to You because of Your great love

A love so rich so pure, a love beyond compare

The wilderness, the barren place

Become as blessing in the warmth of Your embrace.

May my heart sing Your praise forever

May my voice lift Your name my God

May my soul know no other pleasure

Than Your love, than Your love.

We have a wonderful Mighty God who loves us passionately, and because of that will allow trials to come in order to grow us and change us and use us for His glory. We have known Him for over 27 years, and his care for us today gives us great hope for tomorrow. We love and trust Him.

With much love,

Gary and Debbie

GBS Update: Sunday 9th May 2010

2010-05-09T10:00:00.000+01:00

I’m going to church today with Gary and Joel, leaving Luke to enjoy a film with his nurse pals at the hospital, which is just a sign of how well he’s doing. So today’s update comes from Luke:

Thank you so much for all of your prayers. As you have heard by now they are having great effect! As it’s a Sunday, I thought it would be appropriate to pray just one thing:

Please thank God for everything He’s done so far. I have come a long way already and on this day of rest I thought it would be appropriate to simply thank God for everything and to ask for more of the same. Personally, I’m thanking God for

• My voice strengthening day by day

• Being able to get out of bed this week and sit up

• Being able to eat and drink for the first time this week

• For my pain being almost completely under control

• For the increases in strength I’ve seen in my body over the last week

• For the fact that the hospital have moved my level of care from 3 to 2, which means that a move to the ward upstairs might not be far away

• For all of you who are standing in prayer with me and my family and who have helped in practical ways over the last 6 weeks. You are ALL amazing!

It is so great to know that you are taking part in this battle with us and through your prayers I know God constantly holding me, comforting me and giving me hope for a bright future. I firmly believe this is His work and He deserves our thanks and praise for everything He has done so far and all He will do.

Lots of love,

Luke

GBS Update: Saturday 8th May 2010

2010-05-08T10:00:00.000+01:00

Just wanted to start by thanking God for His amazing healing work that He is doing in Luke. We have seen good day after good day and are so thankful and humbled that we have a God who not only loves us wholeheartedly, but who loves it when we look to Him and seek His hand on our lives. We heard the Consultant telling his team that Luke is going from strength to strength, which as we know is not at all usual for GBS!

Luke was again sat up when I arrived yesterday and was being fed chocolate buttons whilst watching the debates after the election. Apparently he stayed awake until 4am watching the results come in! He ate well all day, and had a long sleep in the afternoon recuperating after his late night! The doctors plan to start weaning him off the ventilator, by giving him longer periods of time throughout the day with just the oxygen mask over his trache but without the speaking valve. In order to talk when off the ventilator, he needs the valve fitted to his trache, but at the moment it tires him out as it makes him work harder to breathe. When he slept yesterday afternoon he was off the ventilator for two hours with just the mask over his trache, and didn’t struggle at all. They planned to do the same for the whole night last night, but weren’t sure if it would be too hard work for him. We shall find out when we go in today. The Consultant also suggested that Luke gets out and about around the hospital as he is doing so well. This will mean being in the bed that becomes a chair, with the oxygen mask over his trache and a mini ventilator in case he needs it. It all sounds very scary to us, but the nurses would be able to take him outside for a walk, which would be great as he hasn’t seen the sky for six weeks!

Please pray

1 That Luke will cope really well for longer periods off the ventilator, especially at night. And that he will be strong enough to breathe with the trache mask and speaking valve during the day.

2 Continue to pray for increased movement throughout his body, but especially hands and arms.

3 For him to continue to eat well so that he can come off the tube feeding altogether. Yesterday they took him off the feed during the day, but were going to tube feed him overnight.

4 We are told that Luke won’t be moved onto a ward until he is off the ventilator. Please pray that he will get to that point soon physically, and be ready in himself to make the move.

5 That God will continue to do a sovereign work in Luke, physically, spiritually and emotionally - that He will speak to Luke about His purposes for him.

“For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11 We know God has plans for each of our lives, including Luke’s, and that His heart is to bless us and not to harm us. We trust Him to work out Luke’s future, and ours, as each day unfolds.

With heartfelt thanks and love,

Gary and Debbie

GBS Update: Friday 7th May 2010

2010-05-07T10:00:00.001+01:00

I arrived yesterday morning to Luke on the far end of the ward, sat up in a chair - what a surprise! The ‘chair’ is a flat bed, which they slid him onto horizontally and then sat him up. He had a big smile on his face and looked really good. He managed 25 minutes, which doesn’t sound long, but he’s been lying down for six weeks, so it was a good length of time to sit upright. Again he was very upbeat. I was commenting on the fact that it’s 3 weeks today since he was transferred, which means 6 weeks overall in ICU. He said, ‘I don’t think of it like that, I just think, today’s another day and just get on with it.’ He has amazing peace about him, and the nurses keep commenting on how positive he is. He and we know it is the grace of God.

He ate well again yesterday and is hoping to be off the tube feeding in the next day or so. His arms are gaining in movement, i.e. he can move his elbows out a little, but he still can’t lift his arms. The Doctors are delighted with his progress and the Physios are working at getting him moving more, which is why he is now starting to sit up. We really need to see progress in coming off the ventilator, but for the moment, they are focusing on getting him eating and moving - he can’t do it all at once!

Thank you so much for praying as you do, we have seen so much change in the last 2 weeks, which spurs us on to keep looking to Jesus, our healer and restorer. So please pray

1 That Luke will continue to respond well to physio, that we will see marked improvement in movement!

2 Continue to pray for strength to return in increased measure to his abs. He can now lift his head off the pillow, so strength is returning.

3 For his lungs and diaphragm to get stronger, that the weaning process off the ventilator would accelerate. We have been told that he will continue on ICU until he is off the ventilator.

4 He still has no movement in his legs and feet. These will be the last parts of his body to recover as paralysis with GBS works up from the feet to the head, and as it recedes movement returns from head to the feet. Please pray that he will start to be able to move his toes. They are still uncertain whether or not he has nerve damage in his legs, please pray that he won’t have!

5 For God’s abundant blessing on Luke as he recovers. That he will know God rejoicing over him, and delighting in him

O GOD OF LOVE, I come to You again, knowing I'll find mercy. I can't explain all the things I see, but I'll trust in You. In every moment You are there, watching over, You hear my prayer. You go before me, You're behind me, nothing's hidden from You. How good it is to be loved by You, How good it is. O God of strength, Your hand is on my life, bringing peace to me. You know my frame, You know how I am made, You planned all my days. Hand of mercy, hand of love, giving power to overcome If all beneath me falls away, I know that You are God.

We have sung this song over many years, yet when you’re in a situation like this it is just so pertinent. A friend reminded Luke of it the other day, and it perfectly sums up the passionate heart God has for those He has created. No detail of our lives escapes Him, and though trails may come, He is faithful and with us throughout.

With much love,

Gary and Debbie

GBS Update: Thursday 6th May 2010

2010-05-06T10:00:00.000+01:00

Thank you once again, for all you are doing for our family. We are so glad of your prayers, especially for Luke primarily, but also for the cards, mails, letters that keep coming. For the amazing meals, which are such a blessing at the end of the day to come home to. For the home baking - the boys have never had it so good!! And for our ironing all being taken care of too! It all truly makes this journey a lot easier and we thank you from our hearts.

Luke continues to make steady progress, which day after day is an amazing answer to our prayers. When I arrived yesterday he told me he’d had porridge for breakfast and a long awaited cup of tea! He then enjoyed some soup, followed by savoury mince and mash, followed by chocolate mousse at lunch time. He ate another meal in the evening too, which is far quicker progress than we had ever imagined. They have reduced his tube feeding by half, and tell us that if he continues to eat well, they will stop it from tomorrow!

He was more tired than the day before and was off the ventilator for shorter periods yesterday, but this is probably partly due to the fact that he is eating, which requires a lot of energy in itself. He hadn’t slept well the night before either, as he had pain in his feet. They have taken him off one painkiller which was having an adverse effect on his liver, and have put local anaesthetic patches on his feet to help the pain, which has increased - a good sign, but hard to endure.

Please pray

1 For Luke’s steady progress to continue to increase

2 That he would eat well again today. He finds it very hard work keeping the food in his mouth as his face muscles are weak, and co-ordinating the swallowing with breathing - something we take for granted!

3 That he would have enough energy to breathe by himself for longer periods, which needs to happen if he is to come off the ventilator.

4 Please continue to pray for accuracy with pain relief, and that he would sleep really well. This can have such an impact on how he is the next day.

5 Please continue to pray for the effects of GBS to recede and that his nervous system will start to really show it is repairing by the evidence of movement in Luke’s body. Now he is eating it would be wonderful to see him begin to use his hands and arms especially.

Luke has come on in leaps and bounds over the last two weeks, please join with us in crying out to our Wonderful God for more - to see Luke totally healed and restored.

‘Then they cried out to the LORD in their trouble, and he brought them out of their distress. He stilled the storm to a whisper; the waves of the sea were hushed. They were glad when it grew calm, and he guided them to their desired haven. Let them give thanks to the LORD for his unfailing love and his wonderful deeds for men.’ Psalm 107:28-31

He is the Lord of the storm and the calm and He can be totally trusted with our lives. He has been with us continually throughout this journey and we put our wholehearted trust in Him.

With our love,

Gary and Debbie

GBS Update: Wednesday 5th May 2010

2010-05-05T10:00:00.000+01:00

When I arrived yesterday Luke told me, ‘I feel really good today!’ His pain was under control, and he is now off IV fluids altogether as he can drink through a straw. He enjoyed a chocolate mousse and a petit filous, and it is obvious he relishes every mouthful! The Consultant came along for his ward round and told his team, ’This is my star performer!’ He said the next aim would be to get Luke off the liquid feed through his nose and onto normal food, but he said this will take a good while. His face muscles and pucker will need to be significantly stronger, but he’s on the way.

He had half an hour off the ventilator with the oxygen mask over his trache. He coped well, and then slept soundly for an hour and a half, so he obviously finds it hard work. He had the cuff down on his trache from 8am to 10pm, which means he was initiating breathing for 14 hours, with help from the ventilator. Their aim is to stretch him, but not so much that he overdoes it and goes backwards. Once he is off the ventilator, the aim is to transfer him to a Neuro ward and from there to rehab. This is expected to be a long process.

Please pray

1 Thanking God for so much progress over the last two weeks. Even though Luke is still largely paralysed, he is so much stronger and can see new movements every day, eg his wrists started to move yesterday.

2 For wisdom for the doctors/physios in weaning him off the ventilator. That progress will be at the right pace. We really desire that it is an accelerated process, but not so fast that he relapses.

3 For his pucker/facial muscles to continue to strengthen.

4 For his cough, he can now clear his throat which is amazing, but it’s not quite a full cough yet, and takes lots of energy.

5 The nurses tell us that he is making rapid progress in their experience of GBS, and that he is the most patient GBS patient they have nursed! We know this is the grace of God on Luke, who has always hated pain!!

6 For Luke to get to the point of not needing the liquid nutrition through his nose because he can eat well.

7 For God to continue to speak to Luke in this period of stillness. He has had many prophetic words over him with regard to this, please pray that Luke will continue to ‘Be still and know that I am God’ and to become increasingly aware of God’s purposes for him in this.

8 For total healing!

‘Against all hope, Abraham in hope believed and so became the father of many nations, just as it had been said to him, "So shall your offspring be." Without weakening in his faith, he faced the fact that his body was as good as dead—since he was about a hundred years old—and that Sarah's womb was also dead. Yet he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what he had promised.’ Romans 4 18-20

And we know that God did do for Abraham what He had promised! We have had prophetic words (from so many different people, who don’t know each other) that God is using this to bring about His purposes for Luke spiritually, followed by physical healing and we are fully persuaded that He has the power to do what he has promised. So we look to Jesus, and trust Him to complete his work.

Greatest love and thanks,

Gary and Debbie

GBS Update: Tuesday 4th May 2010

2010-05-04T10:00:00.000+01:00

‘Keep your eyes on Jesus, who both began and finished this race we're in. Study how he did it. Because he never lost sight of where he was headed—that exhilarating finish in and with God—he could put up with anything along the way: Cross, shame, whatever. And now he's there, in the place of honour, right alongside God. When you find yourselves flagging in your faith, go over that story again, item by item, that long litany of hostility he ploughed through. That will shoot adrenaline into your souls! ‘ Hebrews12:2-3 The Message

We’re into our sixth week of this journey, and it’s starting to feel a bit like a marathon, but these verses remind us of what Jesus endured, and that he has gone before us and finished the race we’re in, so we fix our eyes on Him!

Luke had a really good day yesterday. When we arrived in the morning, he was in a lot of pain in his feet, for a good couple of hours. When this pain comes it takes all his concentration and is quite overwhelming. The Consultant upped his medication when he came round and by early afternoon Luke was a lot more comfortable. After that, the day got better and better! He spent about 25 minutes off the ventilator, with just an oxygen mask over the trache. He was chatting with us during this time and quite comfortable. His pucker is almost there, so the Consultant wanted to try him with some water. Luke was able to suck the water from a straw, and was delighted. He was told he can now start to try very soft food, and later on in the day, he enjoyed a pot of apricot yogurt! He had a huge smile on his face, and said he thinks apricot yogurt will now be one of his favourite things, despite it being his least favourite flavour before! He told us when we came to go home that he’d had a good day ‘eating, drinking and being merry!!’ This feels like a real milestone for him. He says that when he is comfortable and feeling that he’s getting better, he’s quite happy. Luke proudly told me on Sunday afternoon, that he’d had an arm wrestle with Gary - and won! His arms are gaining strength, even though he can’t move them by himself, so we see progress day after day! 　 Thank you so much for your prayers, we really weren’t expecting him to be eating and drinking yesterday - what an answer to prayer and what a treat!

Please continue to pray

1 For his pucker to completely get there, it’s well on the way

2 For pain relief to continue to ‘hit the spot’

3 For a rapid weaning off the ventilator - 25 minutes yesterday was a big improvement, please pray for more!

4 For increased strength to his diaphragm, he says he can start to feel it strengthening

5 Continue to pray for complete healing and restoration

6 For Luke to rest in the amazing father heart God has towards him

Thank you for your care, your heart for Luke and your prayers. God is faithful and we do trust him to heal Luke and to bless each of you as you intercede with us for him.

With our love,

Gary and Debbie

GBS Update: Monday 3rd May 2010

2010-05-03T10:00:00.000+01:00

Another brief update today. Yesterday Luke was very tired and by the afternoon he was in a lot of pain. He was getting shooting pains in his feet and legs whenever his feet were moved or touched. As we’ve said before, this is ‘good pain’ as it means his nervous system is repairing itself, but it is hard to bear. He told us there is no real way of describing it. He was too tired to breathe for himself but despite this he said he was feeling well. He is optimistic about his progress which is greatly encouraging for all. The Physio said and we noticed, that he had increased movement in his fingers and a bit more strength in his arms. When we are not with him he is keeping himself entertained with DVD’s, worship CD’s and election programmes and he enjoys having the newspaper read to him.

When you spend time with him it is obvious that God continues to work in him. The progress he has made over the last 10 days or so has been steady, day on day, with no serious setbacks. This was not what we were told to expect. His mood remains good, which can only be an answer to all our prayers, but there are things that he has asked us to continue to pray for

1 That he would be able to make rapid progress in time spent off the ventilator

2 For the pain in his feet and legs to pass quickly

3 That there would not be any nerve damage to his legs

4 For strength to return quickly especially to his upper body

5 Continue to pray for his pucker, which is improving but not there yet. He’s looking forward to a cup of tea!

6 For the peace of God to continue to guard his heart and mind, as he spends day after day on ICU

‘The Sovereign LORD is my strength; he makes my feet like the feet of a deer, he enables me to go on the heights.‘ Habukkuk 3:19

Without God, this trial would be beyond us; knowing Him with us every step of the way enables us to not only walk this path, but as He strengthens us, to have a lightness of step, and a sure and steadfast trust in Him. Thank you so much, every one of you, you are amazingly faithful friends.

With our love,

Gary and Debbie

GBS Update: Sunday 2nd May 2010

2010-05-02T10:00:00.000+01:00

Just a short update today. We can’t believe we’re in to May, it feels like we’ve been in a time warp. Luke was chirpy when we arrived yesterday, and he had slept well. He saw himself in a mirror for the first time, and said he felt so much better than he looked. He was surprised that he looked so ill, and we told him he was vastly improved on a month ago! He became very tired throughout the day, and before we left in the evening had an ECG as he had pain in his chest. They think it was muscular, as he’d been breathing with the cuff down on the trache for most of the day, and the ventilator tubes had needed water draining out of them. Because of this he was working quite hard to breathe.

Luke asks that we have just one prayer request today, and that is that he will strengthen sufficiently to come off the ventilator. His muscle strength overall is showing flickers of life, and he feels that once he can get off the ventilator, he can focus on recovering. All the time he is ventilated he is at risk of infection too. He has now been ventilated for four weeks. Please pray for this to happen, that strength will return to his diaphragm in particular and that his lungs will be strong enough to breathe on his own. This is a big prayer, because at the moment he is only breathing for himself for 10 minutes, once or twice a day which he finds tiring enough. BUT we have a Mighty God, who flung stars into space, and who is the source of healing. So please join with us today in praying for this miracle to happen. It is God, who has enabled Luke to come this far, after the prognosis when he took a turn for the worse, and we trust him to complete His work in Luke.

‘But blessed is the man who trusts in the LORD, whose confidence is in him. He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.’ Jeremiah 17:7-8

Thank you for pressing in to God with us, we are so appreciative of your love, support and most importantly your prayers.

With grateful thanks and love

Gary and Debbie

GBS Update: Saturday 1st May 2010

2010-05-01T10:00:00.000+01:00

Luke asked us to start today by telling you specific answers to prayer, which have come slowly, but continue to come surely. We thank God for intervening in a situation that appeared so dire ten days ago, yet day by day we see continued answers to specific prayer. Luke was much brighter in himself yesterday but sleepy. The Physios have told him that his right leg now has flickers of movement, and his arms have the beginnings of movement too, to bend the elbow. They are reviewing his additional pain relief (morphine), which they started on Thursday, because that can contribute to low mood interestingly! His pain last night was not as bad as it was the night before. He was off the ventilator for another 10 minutes, and he chatted to his aunt and uncle all the way through. These are all small steps, but great achievements for Luke, and significant as we continue to pray to our Mighty God for complete restoration.

The results of the nerve conduction tests showed whether Luke has inflammation of the nerve ends or actual nerve damage, which would be much more serious. The Consultant told Luke that his arms only show inflammation, which is good news, and it would appear the same for his feet. His results on his legs were less clear, largely due to interference from all the machinery on ICU. The intention is to re-do these tests in a couple of weeks. Luke asked what it would mean if he has nerve damage in his legs, and was told that the nerves would have to re-grow, which would take about a year. They have increased his food to energy food as the Physios are working him hard. He said that by the end of yesterday he was feeling like he had more energy which is good.

Thank you so much for continuing to bring him before our God in prayer. Please pray

1 That the damage to Luke’s legs will be limited to inflammation and not nerve damage

2 He was able to clear the sputum in his throat yesterday, which was amazing in itself, but the cough isn’t fully there yet. Please continue to pray for his cough, and likewise with his pucker!

3 That his pain relief will be reviewed so that it will be effective without any nasty side effects

4 That his times off the ventilator will increase as he gets stronger, especially for the diaphragm to come to life again

5 For continued improvement in movement in all his limbs

6 That he will know amazing times with God, and continue to stand on the Truth of God’s promises to him

7 It's Ben's birthday today, please pray that he will be really blessed in the middle of everything going on

We continue to be overwhelmed with your love, support and prayers. Not only has God put around us an amazing army of pray-ers, but He walks with us every step of this journey

Though I walk upon ground that is rugged and uneven Your faithful hand won't lead me astray Through the rain and the clouds, where the sun is barely shining Your grace surrounds my life every day every day You reign, Yesterday, today, forevermore, forevermore You reign, In every circumstance You are good, You are good You rule the world, You rule the world, You reign You are the name above all names, the King above all Kings, You reign!

May Jesus be glorified through this trial, He reigns in every situation of life and we trust Him completely.

With very much love

Gary and Debbie

GBS Update: Friday 30th April 2010

2010-04-30T10:00:00.000+01:00

Thursday was a good day for Luke. When I arrived he was bright and breezy, just finishing off with the Physios and OTs. They told him his arms were a little stronger. In the afternoon the Physios came and fitted a valve on his trachea and took him off the ventilator. He had an oxygen mask over the trachea to help him, but he was able to breathe by himself for 10 minutes or so. He found it very hard work, but was able to do it and chat at the same time, which he wasn’t able to do when they tried it on Monday. He also had a bunch of students brought to him and they had to find out what was wrong with him, by asking him questions. He could answer them but not actually tell them it was GBS, and he enjoyed it I think, as it broke up his day.

By the end of the day, however, he had shooting pains in his legs and feet, which we know is ‘good’ pain’ but doesn’t feel like it. He was also very tired and very low emotionally as we came to leave. It is five weeks tomorrow since he was admitted to hospital, and five weeks on Sunday since he was transferred to ICU. He said that he knows he is getting better, but just felt really sad at the end of the day. This journey is proving to be long and arduous for him, and our prayer requests for today are centered around that fact.

Please pray

1 For an outpouring of God’s healing power on Luke, in an accelerated way. That he would start to see marked improvement day after day.

- that he would be able to cough; he gets sputum stuck above his trachea and finds it hard to dislodge it, and the ability to cough would make all the difference

- for the pain in his legs and feet, often sharp and shooting at times

-for the strengthening of his diaphragm. He is using all his chest muscles (which are strong) to breathe, but it is hard work because his diaphragm is still paralysed

-continue to pray for his pucker in his lips, he so wants this to return

-continue to pray for movement in his fingers, hands and arms

2 That God will encourage Luke as he spends day after day on ICU. He has been so upbeat, but the reality is it’s a hard path to walk, and there will be times when it all feels too much. Please pray for a real peace on him, and a sense of God’s purposes in it all. That he would continually be aware of God’s passionate heart towards him in the midst of adversity

Thank you for continuing to e mail, send cards text etc. It makes all the difference to Luke, as I print off all mails and texts etc and along with the cards read them to him each day. He says they are a real highlight for him and encourage him so much.

A friend sent these verses from Isaiah 40 for Luke today, and it would be really good if you could pray it for him today,

‘Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.’

We have a Mighty God, who holds us in the valleys and sings with us on the mountain tops, and it is in Him we trust

Greatest thanks and love

Gary and Debbie

GBS Update: Thursday 29th April 2010

2010-04-29T10:00:00.001+01:00

Luke has taken control today and suggested prayer points, and has a message for you too. He had his seventh good day yesterday, and is amazing the staff, who keep coming and telling us how well he is doing and what a great attitude he has. One of the sisters told us last night that usually people of Luke’s age and at the same stage of GBS are miserable and angry with the limitations of their body. She said it was great to have someone joking and bantering with them, and with such a positive attitude. Luke replied, ‘Well there’s no point in being miserable - I’m getting better!’

Luke asked today for three points to be prayed for:

1 Key areas of his body

His pout - he would dearly love this to return sooner rather than later as it will mean he can start to drink and eat, which he is very keen to do!

His fingers, hands and arms - this would start to give him a level of normality, and together with the pout returning would mean that he can start to feed himself and write etc. This would be a major step forward, but not too difficult for God we know!

2 Management of GBS

Pain relief - that doses of pain killers etc would be managed well, that God would give wisdom and accuracy to those treating him. He was in pain the other day, and they added another morphine drug to manage the pain, when Luke realised that the pain killer patch on his arm had fallen off, which was why the pain had ‘increased’

Trache - the doctors have discussed with Luke the process of weaning him off the ventilator. This should be a long and drawn out process. Please pray for Luke’s lungs to increase in strength, and that he would adapt well to decreasing ventilation, that God would accelerate the process.

Treatment - he had nerve conduction tests yesterday to clarify for sure the position re plasma exchange. Please pray for the right outcome for his healing

3 Comfort in hospital

For good rest and sound sleep, he told me yesterday he’s had a ‘magnificent’ sleep the night before, which makes such a difference to the next day, and the healing process

For positioning. He can become very uncomfortable, and has to be turned every 2-3 hours, when he is comfortable it makes such a difference to him. He’s been in bed now for nearly 5 weeks

For communication with the nurses, particularly when the cuff on his trache is up and he can’t speak

For wisdom in starting to have visitors. That as and when that happens, he won’t get too tired

Luke dictated this message last night for every one of you

‘In the last week I have made exactly the ‘significant progress’ the doctors warned me not to expect. In my mind, this can only be down to our awesome God answering your prayers. Thank you so much. Please keep going! And know that as you pray, you are joining me in the fight to see this GBS fully retreat. We have seen so much progress already, but there is still so much more to come! Thank you doesn’t seem enough, but you all have my heartfelt gratitude for the part you are playing in my recovery.

With much love from Luke

GBS Update: Wednesday 28th April 2010

2010-04-28T10:00:00.000+01:00

We begin again by thanking you for continuing to intercede alongside us. Luke is progressing day by day, for which we thank God - that is in itself a miracle! The doctor told him yesterday that they are pleased with his progress. He said Luke is doing well and that he knows it’s easy for him to say as doctor, and not the one experiencing it, but Luke will be OK. They can still see traces of the autonomic response to GBS in his heart rate, and there is a slight risk that he will have some permanent loss of movement. They have told him that recovery will take months rather than weeks. The doctor also told him that GBS patients can be prone to depression, as it is so debilitating over such a long period of time. He asked Luke if he thought that applied to him. Luke replied, ‘No, I’m very upbeat! Just ask the nurses - I’ve been annoying them!’ That has to be the grace of God on a man who has been paralysed for over a month, and unable to speak for nearly as long! (Especially difficult for Luke as we all know!) We have an awesome God who not only cares, but answers us when we call on Him.

Please continue to pray with us

1 For the autonomic response of the GBS to go, and for no more traces of it to remain.

2 That Luke’s recovery will take weeks rather than months as the medical staff predict.

3 Pray for his bowels to keep functioning - some of his medication can interfere with this.

4 Luke has a flicker of movement in his inside left thigh, but apart from that his legs are totally paralysed. Please pray for them to start to come to life and function as they were intended to.

5 There is still no movement in his abs, please pray for them to start to work.

6 Please pray specifically for his index fingers and thumbs. He is moving his other fingers quite well, but there is only a flicker of movement in the first fingers and thumbs.

7 For general strengthening of Luke physically, that the overall paralysis will start to disappear, that his body might become strong and healthy. That there would be no permanent loss of movement.

8 For the ongoing work God is doing in Luke. That he will know God’s heart for him and direction for the future.

Luke has an absolute certainty of God’s sovereignty in this, and it is humbling to see the grace with which he is handling this trial. We know that it’s God’s enabling, and Luke would willingly tell you that if you asked him.

‘In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith—of greater worth than gold, which perishes even though refined by fire—may be proved genuine and may result in praise, glory and honour when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the goal of your faith, the salvation of your souls.’ 1 Peter 1:6-9

We know God is working this out for our good. What is faith in the good times, if it does not endure through the bad?

Heartfelt love and thanks

Gary and Debbie

GBS Update: Tuesday 27th April 2010

2010-04-27T10:00:00.000+01:00

Well, what can we say? Last Wednesday, we almost lost our precious son, but here we are 5 days later with so many answered prayers for which we praise our Sovereign God. He is still very ill, but the doctors say he is strengthening, and Luke has such a positive and thankful heart for all God’s done for him and in him. The biggest thing Luke was grateful for yesterday was that the doctors decided to hold off the plasma exchange as he has made such marked progress since Wednesday!!

God has surrounded us with an army of pray-ers, and we thank each one of you from our hearts for fighting in prayer with us for our boy. We heard yesterday that a church of 3000 have been praying for Luke in Africa too! So we know there are thousands of you interceding with us for his life for which we praise our Mighty God. We are so grateful for such answers to prayer, but there is much still to pray for, so please bear with us until we see Luke fully healed and restored.

Please pray

1 For the continued strengthening of Luke’s lungs. They tried him with a valve yesterday to use instead of letting down the trache, but his lungs still aren’t strong enough. Please pray for healthy, strong lungs, so that he may actually come to a place of not needing the ventilator. This is usually a long process.

2 For increased movement in his fingers and hands. There has been definite improvement here, but there is a long way to go for full movement.

3 He has a lot of sputum in his throat. It can’t be suctioned off his chest as it lies on top of the trache, and he can’t seem to dislodge it. Please pray for this to loosen.

4 The antibiotics have now stopped. Please pray that he won’t become infected again, which is a constant risk when you are ventilated.

5 Gary has just spoken to his nurse, who said he has had pain in his body overnight. This is ‘good pain’ but has interrupted his sleep. Please pray for this to go, and that he will be able to sleep and rest. Please pray that he wouldn’t relapse in any way.

6 Thank God that he is still able to speak, and has been enjoying banter with the nurses, asking what privileges you get for being the longest serving resident in ICU, which he is now they have transferred somebody else out!!

Only God can bring Luke out of this trial and it to Him we look continually. We see His hand in so many ways, and know that we can trust Him. Luke has been listening to this song over and over in hospital

Who, oh Lord, could save themselves? Their own soul could heal? Our shame was deeper than the sea Your grace is deeper still

You alone can rescue, You alone can save You alone can lift us from the grave You came down to find us, led us out of death To You alone belongs the highest praise

You, oh Lord, have made a way The great divide You heal For when our hearts were far away Your love went further still Yes, your love goes further still

You alone can rescue, You alone can save You alone can lift us from the grave You came down to find us, led us out of death To You alone belongs the highest praise! Thank you for praying your hearts out with us!

With much love

Gary and Debbie

GBS Update: Monday 26th April 2010

2010-04-26T10:00:00.000+01:00

Thank you so much for interceding as we know you are - we have a Mighty God, who works all things together for good for those who love Christ. Yesterday morning Gary went to church and I went to visit Luke. As I came to his bed I said hello to him and I heard ‘Morning!’ back. He was speaking again. He had seen the physio earlier on and she suggested that rather than fully lowering the cuff on the trache for a couple of hours a day, why not half lower it (which meant Luke could still talk, albeit slightly squeaky) for the whole day and then close it up at night. He had also seen the consultant who said to him ‘You are going to cause us a problem Luke - you’re getting better!’ Luke asked him ‘Does this count as significant improvement?!’

The consultant told him that as he was the consultant anaesthetist, it wasn’t his decision whether or not they would go ahead with the plasma exchange on Tuesday, but he said that as Luke is now able to talk he could contribute to the discussion with the consultant neurologist, about the way ahead when he sees Luke today.

He was also told by the consultant that he had to imagine he is 50 years older, and speak in short sentences, and have a siesta every day, or he will wear himself out talking! When the physio came back later in the morning she said, ‘The doctor is really pleased with you today, I can tell you!’ Luke told her he was glad to have his voice back as he is one of the world’s great conversationalists!! (As many of you already know!)

He is still paralysed, with no feeling in his feet or movement in his legs or arms, but his fingers were moving significantly more yesterday than on Saturday.

Turning the cuff half down on the trache means he is still getting support from the ventilator. BUT there is significant improvement from our point of view, and yesterday afternoon Luke spent the whole time cracking jokes, and we were all killing ourselves laughing - it was so good to have the old Luke humour back again! The nurses and doctors were all saying how lovely it was to hear laughter on ICU!

Luke has given us lots of prayer points for today

1 Thank God for the amazing work of healing He is bringing about in Luke.

2 Please pray that Luke’s lips will start to pucker. The doctor suggested he try a drink of water, but the physio says that until he is able to move his lips, and especially to be able to pucker he won’t be able to hold the water in his mouth.

3 That his abdominal muscles will start to work. The reason he cannot lift his head is because his abs are paralysed.

4 He still has a little double vision, please pray that his eyes will align correctly to eradicate this.

5 Thank God for the improved movement in in his fingers, but he can still only move them a bit when his hand is turned over. Please pray for this to increase.

6 He was sweating again yesterday, please pray for this to stop.

7 For continued bowel movements!

8 That the conversation with the Neurologist goes well today, and that Luke would be able to voice what he thinks and that the consultant would have an open mind about waiting to see if Luke really needs plasma exchange.

9 That Luke will continue resting in the love God has for him.

Our constant prayer is that Luke will continue to have good day after good day and not relapse in any way. This would be miraculous, but he has already had 4 consecutive good days, which is a miracle in itself!

‘Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed’ says the Lord who has compassion on you.’ Isaiah 54:10

Our eyes are on Jesus as we see His miraculous healing work unfolding before us. His unfailing love and peace towards us will endure forever.

With our greatest thanks and love

Gary and Debbie

GBS Update: Sunday 25th April 2010

2010-04-25T10:00:00.000+01:00

What a difference a day makes! When we went in yesterday morning Luke was keen to tell us that the physio and consultant had both been quite positive. This physio hadn’t seen Luke for a week and told him there was a big improvement in his facial muscles. The consultant had adjusted the ventilator so that Luke was initiating every breath and had also reduced the flow. He was greatly encouraged by this. He was quite sleepy after the physio so we left him to rest.

After lunch we returned and were met on the ward by the consultant who told us that Luke had had his first bowel movement without any help since he first became ill. He said this was really good news, as not only did it mean his bowel has started to function on it’s own, but it would help everything else, like his heart and breathing. When we got to his bed his heart rate was the lowest we had seen it and he looked good.

After about half an hour the consultant came over and said he thought it was about time we heard Luke’s voice! He suctioned Luke’s chest, and Luke asked to sit up a bit. They removed a load of gunk, then lowered the cuff in his trache and Luke opened his mouth and had a voice - it was amazing! The consultant said he would leave it like it for a bit to see how he went. As we chatted, they took bloods to check he was coping ok, and the nurse came back to tell us he was doing well, and he could continue for a bit. He spoke with us for just over 2 hours!!! His heart rate and BP remained stable throughout and he was able to talk about how he’d coped etc. He told us that on Wednesday when he took a turn for the worse, he remembered being surrounded by 4 or 5 doctors all trying to get a line into his body after his BP had plummeted. They eventually managed to get one into his groin. He remembers being in huge pain, but kept repeating ‘He that is in me is greater than he that is in the world!’ Throughout the time we were talking he was moving his hips and his whole torso started to move as well. What an answer to prayer!!

We praise God for these amazing improvements, at a time when the consultant was not expecting any significant improvement over the weekend. Luke kept saying to us , ’Is this ’significant’ do you think?!!

They tell us that they expect Luke to have a ‘bad’ day today, given he worked so hard yesterday. Our prayer is that that would not happen, which would mean a miracle given what is normal for GBS, but we serve a God of miracles so please join us in praying that Luke would see improvement upon improvement.

Please pray

1 That Luke would have a good day today, and continue to see some progress.

2 That he would not need plasma exchange on Tuesday. We don’t know what they term ‘significant improvement’ but please pray that there will be exactly that.

3 For movement in his arms and hands. Yesterday afternoon he had a very slight twitch in his fingers. Please pray that this would strengthen and increase.

4 Luke now has shooting pains in his feet, but the nurses tell him that is a good sign, as it means the myelin sheaths on his nerve endings are beginning to grow back.

5 Luke’s faith in God and His love for him has escalated through this time, praise God for that and pray more Lord!!

When John came to pray on Friday we met the consultant in the corridor. John told him that he was praying for Luke to have a good day after good day. The consultant told him that this never happens with GBS, but that progression is always up and down. Our hearts desire would be that God would confound these expectations, by showing that He is a God of power and does work miracles even today! We look to Him who is able to do immeasurably more that we can think of or imagine, according to His power that is at work within us.

We know there are so many of you praying with us, right across the world. We cannot thank you enough, but God knows and hears every prayer and our prayer is that He will bless you richly as you fight with us.

With heartfelt love and thanks

Gary and Debbie

GBS Update: Saturday 24th April 2010

2010-04-24T10:00:00.000+01:00

We have just rung the hospital this morning and they tell us that Luke had another stable night. He was bright yesterday, and his BP and heart rate remained stable. The consultant is concerned, however, that his chest is not improving as they would like it to. They are still planning on Plasma exchange for Tuesday unless there is significant improvement. John and Chris both came and prayed with Luke yesterday, which he greatly appreciated. Mentally and spiritually Luke is feeling good, and he has an ever increasing trust in God through this trial. His body is weak and frail but he knows God holding him and speaking to him, which gives him great hope.

Thank you for all your prayers….

1 Luke has asked that we pray for significant improvement over this weekend. He knows that if it comes to Tuesday and he needs Plasma exchange, God will hold him through it and have purposes in it, but his great desire is that he will not need it. Please pray with him and us that there will be marked healing in his body before Tuesday.

2 Please pray for his chest to clear and remain clear. He was told by the physio, that he must have strong lungs, to be able to ‘speak’ to us as he does. This pleased him and he is glad he spent all those years playing the euphonium! These strong lungs now need to fully function in the way they were intended to. Please pray for strengthening of them, that he might be able to breathe more by himself.

3 For movement to return to his fingers and arms. He has very strong shoulders, but the doctors say that any movement in his arms is coming from his shoulders, and they want to see him start to be able to move his fingers, which would show that his nervous system is starting to recover.

4 Please pray for Luke to confound the normal progression of GBS, and for him to improve day by day. The doctors keep telling us that he will have good days followed by bad days, but this becomes really wearying for him. Please pray that the improvements he sees will remain and actually be built on by further improvement.

5 The doctor said yesterday that he has no idea why a young, strong, fit young man like Luke has this so severely. Continue to pray for total restoration and that God will show His purposes in a mighty way.

I woke up in the night last night and was praying for Luke. Over and over in my head were the words of a song we’ve sung in our Church over many years

‘Show your power O Lord, demonstrate the justice of Your kingdom Prove Your mighty word, vindicate Your name before a watching world. Awesome are Your deeds O Lord, renew them for this hour Show Your power O Lord among the people now.’

Our hearts cry is that God will come and show His power, not only to heal Luke, but to demonstrate to the world that there is a God, who is mighty and powerful and who cares about each of us passionately. The hands that flung stars into space are the hands that hold Luke now, and we trust Him.

Thank you faithful friends - keep fighting with us!

With very much love

Gary and Debbie

GBS Update: Friday 23rd April 2010

2010-04-23T10:00:00.000+01:00

We just want to thank all of you for your heartfelt prayers for Luke. We have a Mighty God who hears every one. When I arrived yesterday morning he was sleeping deeply, which hasn’t happened during the day before. When he woke he was bright, and said he had slept all night felt ‘normal’ again. His BP and heart rate have been stable, and the profuse sweating has stopped. He said he felt at peace, physically and spiritually, and we both enjoyed some worship songs - Luke was laying there singing but with no sound. It was very moving! He tells us that the doctors yesterday have told him that this weekend is critical for him, and he has asked his Church leaders to come and pray with him again, hopefully today. We have spoken to his nurse this morning and she said he had another good night, and was stable this morning.

Please pray

1 That Luke would remain stable at this point and have no further autonomic responses to the GBS. That his body temperature would remain normal, and his BP and heart rate.

2 That Luke would start to see physical strength increase. He had his wriggle back yesterday, but no movement in his fingers.

3 Continue to pray for total healing, Luke is in faith for this too

4 For wisdom for the medical team looking after him. The consultant queried why Luke was on so many different drugs, and also their quantities. They are in the process of weaning him off some and reducing others. Please pray that they will get the medication right.

5 For God to continue to be with Luke, to speak to him, hold him, love him.

You are amazing, and we have had so many prophetic words, pictures and scriptures from so many of you over this time. We do believe them to be promises of God and hold onto them. Thank you doesn’t seem enough! Please accept our apologies for not replying, hopefully getting this daily update will go some way to saying how heartened we are to be surrounded by your love and support and passionate prayers for Luke. It’s impossible to respond to every message we are getting which is why we send this out, but we do read every one.

‘O LORD, our Lord, how majestic is your name in all the earth! You have set your glory above the heavens. …..When I consider your heavens, the work of your fingers, the moon and the stars, which you have set in place, what is man that you are mindful of him, the son of man that you care for him? You made him a little lower than the heavenly beings and crowned him with glory and honour……. O LORD, our Lord, how majestic is your name in all the earth!’ Psalm 8

How amazing that our Lord Jesus Christ thinks about us and cares about us. He numbers the hairs on our heads and knows each beat of our heart. Nothing about us escapes Him, and we can trust Him completely.

With our love

Gary and Debbie