Sunday, June 14, 2015

Pressed but not Crushed

Hi everyone. 

We just realised it's been five months since our last update.  Sometimes it's good for us to go back and read where we were a few months earlier.  Well, quite a bit has changed. Following on from January's post we have been to see Vicky and Paul again and had a great day.  Onesimus,  our puppy,  has established himself in our family and it's hard to remember a time without him.  We have been on the cruise we spoke about and it turned out to be even more special than we could have imagined, particularly because the whole ship was easily accessible. We both really relaxed. 

Therapy-wise Andy's torso has significantly strengthened and his stronger quad muscles have made it possible for him to be able to stand with much less assistance; we use a handling belt and a standing transfer aid to do this at home.  In the last update we asked specifically for prayer for his quads but now we really want strength for his glute muscles, so believe it or not, Andy really wants prayer for his bum!!!!

Another project, which has become dizzying, is organising a black tie ball for charity.  In September this year Andy's book,  Pressed but not Crushed:  Living with Faith and Locked in Syndrome, is being launched and we are organising the ball not only to coincide with this, but also to celebrate the progress over the preceding four years.  The book launch date will be September 14th and hard copies, kindle editions and an audio version should be available on Amazon and in various Christian book shops. 

It felt fitting to quote the scripture that gave the book its name and sums up where we are at at the moment:

2 Corinthians 4:8-9
'We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. '

Andy's book:  to be released Sept 15

 Onesimus on the beach
On the cruise

Tuesday, January 27, 2015

Happy New Year

Hi everyone and happy new year. We seem to have hit this new year running. We had a busy but lovely Christmas, which we shared with both close and extended family, and we were glad that Andy's casts came off just in time.  Just after Christmas we met up with another couple similar to ourselves. Paul lives with his wife, Vicky. He is just a few years older than Andy and has also suffered locked in syndrome. We were able to share ideas, experiences and plans for the future. It was really good and we can't wait to see them again.

Thanks to everyone who prayed. Since the operation once Andy had his casts off we  have seen a sizeable improvement; this is despite it being les frequent because of the pressure sores on Andy's heels, not to mention that Andy has also been revising for his exams. Andy is now able to put far more power through his legs and we hope that one day soon he will be able to transfer without a hoist at home.

Other Positive News
  • We have decided to increase our family with Onesimus the Labrador puppy, who arrives February 12th. We can't wait to have him home.
  • We have just paid the balance payment for our cruise in May so that it really feels like it's happening. 
  • Andy has led his first proper  church home group, especially for people who may otherwise find attending a home group difficult with other commitments. 

Prayer Pointers
  • Please pray that our small group takes off and people are able to commit the time to come.
  • Please pray that there is even more strength in Andy's quad muscles and also that he can recruit these muscles quicker.
Finally....

This is a scripture that has been close to our hearts more recently:

Psalm 103
1Bless the Lord, O my soul;
And all that is within me, bless His holy name!
Bless the Lord, O my soul,
And forget not all His benefits...

  
It would seem that in this Psalm  the writer is encouraging his soul to bless the Lord, perhaps despite his feelings, and he does this by recalling not just his physical but also his spiritual blessings.  If we are able to put our obvious difficulties beside for a moment, there are numerous benefits which we as a couple enjoy.

Thursday, November 27, 2014

Prayer Needed

Hi all. We just wanted to thank you for your continued prayers and support and give an update following the op. All went to plan in terms of the surgery itself and the surgeon was happy with the position achieved on both of` Andy's feet. Andy had his initial casts removed and new casts put on on Wednesday. The surgeon said that he was happy with the way the wound is healing however Andy has developed a pressure sore on his one heel and there is a really big blister on his other. These are causing Andy tremendous pain and making it difficult for him to sleep and cope with positioning in the day. He is going back next week to have the casts taken off and replaced so that the team can keep an eye on the pressure areas. Andy is feeling quite low because of the pain and the ordeal.  We would really appreciate your prayers over the next few weeks as Andy will need to keep his casts on until Christmas.

Wednesday, November 12, 2014

Surgery tomorrow

Emma and Andy at Snowdon October 2014



Written by Mum

On Monday 31st October 2011 as Andy went into hospital, the following verses were the subject of my Bible reading notes and on that day I knew that God was speaking to me, preparing me for what was to come and reassuring me that Andy would be well.
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.
                                                                   (Isaiah 40:30-31)
At that time the message of hope was just what I needed to keep me strong and faithful, firmly believing that Andy would indeed regain his strength, walk and run again. I firmly believed this promise and it gave me the faith and determination to help Andy and Emma through this nightmare.  As the months and years have passed my faith has not diminished that the Lord is indeed healing and renewing, not only Andy but all of us. So why isn’t Andy able to walk and run or even move his legs?  The answer came repeatedly ‘God’s timing is perfect.’ 

Today, Wednesday 12th November 2014 the same chapter from Isaiah featured in my Bible notes.
Isaiah 40: 21 – 31 
The verses tell of our amazing creator God who is in total control of the universe, the earth but, amazingly,  totally involved in the lives of each one of us;
‘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’ 
                                         ( Isaiah 40: 28 – 29)

Tomorrow, 13th November, Andy goes into hospital for surgery on the tendons in his ankles, to enable him to exercise his legs and be able to stand on his feet. Understandably, Andy is very apprehensive about being in hospital. Thank you to all of you who continue to pray for Andy, Emma and the family, please pray especially for the surgery tomorrow.
We continue to trust and hold on to the promises of God and pray that Andy will indeed,
‘soar on wings like eagles
    ….. run and not grow weary,
    ….. walk and not be faint.’




Saturday, June 07, 2014

Travels

We have been on our travels over the past few weeks. We began with our trip to beautiful Jersey with Paul and Katie. It was a challenging adventure and Andy was a little nervous about the long journey by car and by sea however the journey went as well as could be expected. Our accommodation was stunning and the weather treated us well. We did some lovely walks along the various promenades and enjoyed visits to a vineyard, the war tunnels and an animal sanctuary. We both really relaxed whilst there.


On return to the UK, Andy had his exams in Malvern. He found them really hard but was reassured that the rest of his class found them equally challenging. Andy does find it difficult to revise for exams as his eyes have been affected and so he has to rely on somebody to read to him. We'll let you know how he does but he isn't too worried as he has been getting good grades on his assignments.

After being in Malvern we went to Burscough to see Andy's family and Emma traveled on to Leeds with friends to attend the Abundant Life Church's annual women's conference.

Finally our travels led us to London to do a climb over the O2 arena. We were unsure of what to expect but it was essentially that two strong blokes literally heaved Andy and his wheelchair up and over the O2. A very surreal experience but a good one, especially when we were able to enjoy the views from the top. We also enjoyed time with Tina, Keith, Luke and Jake, Andy's sister and family, and visited the Olympic Park. It was Tina, who in fact bought the O2 experience for Andy as a gift for his birthday.







We thank you for your prayers on the carer situation. We seem to have this sorted for now and we are really pleased with both of the new regular carers; Andy feels relaxed around and gets on with both of them. There is a set up whereby our main carer does three weeks on and one week off. She is a lovely girl from South Africa. The other carer is a Northerner so he and Andy get on well.

Saturday, April 12, 2014

Spring 2014


It's been a while since our last post. We have had the garden made accessible. Andy designed it so that there is a path going from the top to the bottom with a bridge linking the two parts; there is also a ramp up to the decked area. We are both really pleased with the results and it adds another accessible 'room' to the house in the summer months.

We mentioned in our last post about a course of further rehab being provided by the NHS. We were disappointed with what was actually offered as it wasn't the intensive therapy, we had expected. Instead it was a series of assessments which concluded no NHS therapy would be provided anymore. So from hereon any therapy Andy receives must be funded privately.
We have various breaks booked for the year ahead, which we are very much looking forward to. We are going to Jersey in May with Paul and Katie (Andy's brother and sister-in-law). We also plan to have a break in October with the extended family in an accessible holiday cottage on a working farm in Wales. Andy will also be getting back to his climbing roots in June when he will be going to the O2 arena to abseil down the side of the dome!!! Photos to follow!!! We try to get away for  a night somewhere each month just the two of us and we normally pay for a carer to just come in for a couple of hours in the morning to assist Emma in getting Andy up.

We have had some challenges once again with our carers as all of our regular carers have left over the past few weeks for various reasons. We do have one new carer who we feel comfortable with, who is willing to become one of our regulars but we still need at least one other. Andy has been quite anxious about the situation as he feels vulnerable with new carers. Please pray.

Andy has been to university multiple times this year. Since we last wrote he has also had some more grades and is doing really well on his assignments. Now he is facing two exams and two research papers, which all need to be completed in the next few weeks so he needs to remain focused. He is really enjoying his studies.

We asked for prayer in the last post for Andy's right ankle position. We now hope to be able to improve the position of Andy right foot through serial casting using a different technique to what has already been tried. If this works, he shouldn't need to have an operation to lengthen his tendons. Please pray that this is successful.

In therapy, Andy is still making improvements. There has been a noted improvement in Andy's torso control, which had diminshed following the fitting of the baclofen pump. We were especially encouraged in today's physio session, when Andy was able to isolate movement in his left knee and did forty or so reps of bending and straightening the knee with his full weight going through his leg. We would hope that this would also be possible with the right leg, however his foot position is preventing him from trying this at present.

We thank you for your continued love, support and prayers.

Tuesday, January 21, 2014


 

Happy New Year!!!


We really enjoyed Christmas and New Year. With Andy being that much stronger we were able to enter into the festivities much more than the two previous years!!! We spent Christmas itself up in Burscough with all the Davies side of the family. It seemed like Christmas went on and on as we had various pre and post Christmas get togethers with both sides of the family and friends at our house. Andy has always enjoyed entertaining and one of his favourite 'days out' is to go to Costco to choose party food for his guests and so we made a couple of trips.

An encouraging highlight of Christmas was that Andy was able to enter into conversation at the dinner table when sat upright in his wheelchair. Previously his speech had only been intelligible when he was reclined. On top of this Andy managed to have some drinks without thickener with the crescendo being him enjoying half a lager at The Hopvine, which is Barbara and Trevor's local. One of Andy's Christmas presents was a coffee maker and he has taken great pleasure from buying an assortment of coffees and syrups. We have created our own Starbuck-like-haven in the corner of our kitchen for when friends visit.

We would appreciate your prayers. Andy has been granted the funding for another programme of therapy through Birmingham Neuro Rehabilitation. Please pray that Andy is able to noticeably improve during this time.

One thing we really want prayer for is for Andrew's feet. Andy had new splints made in the summer but the ankles haven't significantly improved since. We have been praying for this for months, especially because Andy will need an operation to lengthen the tendons if they fail to stretch through splinting. After six months of little or no improvement,  it seems inevitable that he will need the operation but we also believe in persistent prayer, so please pray that his ankle position improves such that the operation isn't needed.

After finishing a part time course at university, Emma has gone back to work part time. The job works well as paperwork can be done from home to fit in with Andy's routine. On the two days that Emma is teaching, Andy has his study facilitator visit and also continues with some therapies. We are both thankful for the way this has worked out and that Emma's  previous employer has accommodated her in her return to work.

We had quite a frustrating time at the beginning of January with the arrangement of carers, as one of our regulars was off sick and this coincided with Emma going back to work. A carer, who didn't have English as his first language, was sent to us and, because of communication issues, Andy was left very vulnerable and so the carer had to be replaced at short notice. The replacement carer was good but he was unable to handover to our new regular carer because he wasn't familiar with the regime so Emma had to assist. This new carer has picked things up really well and so we now have three carers, who are able to alternate. Having these carers, who Andy feels comfortable with and trusts is imperative to Andy's care and well being, so thank you for your prayers for this.


Psalm 18:28-29
You, Lord, keep my lamp burning;
    my God turns my darkness into light.

With your help I can advance against a troop;
    with my God I can scale a wall.