On a cold bright January day around seventy beautiful tie dyed souls, along with eight children and several dogs all gathered together with love in their hearts and one sole purpose….. to welcome our boy home. The clouds cleared and the sun shone with the collective enthusiasm, friendship, family, faith and hope of us all.
Well it’s been a while since we last updated you lovely Peas & Glovers. Sorry it has been so long but this year has been pretty hectic.
Olly had a quiet start to the year but in the background his family and support team were making ambitious plans to bring him back to Jersey for a long weekend. It had been too long!! The original idea was to celebrate his birthday on April 1st. He had other ideas and a mild infection meant he couldn’t travel. We think he wanted warmer sunnier weather for his trips to Le Port and The Splash!
There was a lot of detail to sort out. He had to travel with a team of five to look after him 24/7. He had two members of staff from QEF (one for the day and one for the night). Then another three, two of whom were paid for by P&G. The third one had to travel on his own and bring Olly’s wheelchair. A bit strange seeking special assistance without anyone in the chair!! He certainly had some querying looks. Along with the whole travelling team, Olly stayed at Maison Des Landes, in St Ouen. What a fantastic team running the hotel and a great place to stay. ‘Team Olly’ were welcomed like old friends and the use of the hotel’s adapted pool everyday was a big bonus.
Over the few days Olly was back, we managed to fit in ice cream at La Saline and a gathering of (forty of his closest) friends at a farm in St Mary. The group included some children that ‘Uncle Olly’ had never met. During the farm visit we all wanted to say hello to the pigs who were across the field. The chair wouldn’t run on the newly laid grass so a plan was hatched. Everyone was involved in moving 8ft boards to create a moving walkway to get across the field. Two people each time moving six boards were continually carried from the back to the front with Olly moving across this ‘friends made’ roadway. True Peas & Glove can do spirit!!
Olly also had time near the beach at Le Port and The Splash, meeting lots of friends, many of whom hadn’t seen him since that dreadful day back in 2014. What a fantastic few days with Olly seeing, hearing and smelling the sea for the first time in quite a while. He seemed to enjoy every minute of what was an emotional and inspiring time.
Olly’s visit seems to gee on the organizers of Permanent Ollyday IV, which was a great success yet again. Daly was so confident about everything, for the first time it became a two day event, with Sunday sessions for those happy to sit out in the sun and drink beer (& coffee!!)
You all know how successful the new look two day festival was. The sun shone and thousands of people had a great day with some amazing music and all the other entertainment for young and old. Gypsy Unit went down a storm and expressed how touched they were by our inspiring story.
Since Permanent Ollyday IV in May this year (well done yet again Sir Daly!), there has been loads going on with fundraising and raising awareness. In particular to mention Caitlin Dias, Katie O’Shaughnessy, Gerry at The Splash and The Gallery Family. Jersey has seen P&G stalls at Reasons, Off The Hook, Gig-y-Don & The Weekender. During the Summer, Sir Daly and crew also took the message to the Boomtown Festival and dropped in on Olly both on the way there and the way back. Our sincere apologies if we have forgotten any one. Everyone plays a part no matter how big or small.
There have been some amazing individual efforts and donations that have made a big difference to our ability to provide and support essential therapies and equipment. One piece of kit was an electric motor that secures to the back of his manual chair giving invaluable assistance when getting him out and and about. ‘It has changed our lives’ – is a quote we have had a few times from his carers. Good to hear that all our efforts are so well received. The manual chair is used when Olly is being driven anywhere, with the first power chair bought by P&G being used when he is at the centre. Olly is also trialling some new ‘eye gaze’ technology that learns how he interacts with the screen and adapts to that. It is hoped this will be an important tool in improving his communication. All funded by Peas and Glove donations.
Since our last update, Peas & Glove has continued to support Olly’s weekly music therapy sessions with Dr Jonathan Pool from Chroma. All rehab is intense but he enjoys music so much it doesn’t seem like work to him. In addition we have used some funds to support weekly hydro therapy sessions at a nearby NHS pool with the hope to increase that to twice a week. Olly is always wide awake and alert during music and hydro. We all always felt that water and music would be key elements to his rehab and recovery.
Matt and Paul also recently attended a MIDAS driving course run by the Queen Elizabeth Foundation in the UK, and as fully fledged ‘volunteers’, they are now able to drive QEF vehicles and get Olly out and about, an especially welcome activity at weekends! On the subject of vehicles, this week, Peas & Glove is now involved in obtaining a van for Olly, a VW Caravelle Nevada. This particular vehicle has been chosen as it has a dropped floor (Olly is a tall guy at 6 foot 2!!) and in time can be configured to allow Olly to be ‘up front’ with the driver. It is hoped the van will allow even more freedom for Olly, his family and friends. It will also be very useful in getting Olly to external therapies and appointments rather than relying on specialist expensive taxis. The van will be coming back with him when he finally comes home. Most likely on the first trip, full of everything from his room at QEF!!
So in summary, it’s been quite a year and will continue to be for all of us. Your love and support always makes the difference and we will never forget or underestimate it.
Love, health and strength to you all.
Peas & Glove
Firstly may we wish all Peas and Glovers everywhere a very Merry Christmas and healthy and peasful New Year.
The festive period coupled with the end of another year seems a good time to update you again on Olly’s progress and perhaps make mention of one or two things that haven’t yet been said.
This will be the fourth Christmas that Olly has missed out on. Last year he spent all of the holiday period in the High Dependency Unit at Epsom General Hospital, in the main due to his first episode of sepsis. Olly remains susceptible to infection but (touch wood) he has been very well for these last few months.
The medical team responsible for him have made some changes to his daily medication regime in particular the reduction and removal of an anti convulsant drug. Having removed that dosage completely, he now spends more of the day awake and far more engaged. As we have been asked so many times ‘do you think he recognizes you’, for the first time really with some certainty we would say ‘yes’.
The therapists around him are now often working together on new sessions and activities. Communication is a very vital thing to establish. Even simple binary responses would allow everyone around him to understand if he is too hot, feeling unwell or just wants to sit and watch some YouTube videos of himself and Kyle beatboxing in the back of a van! (There are quite a few of those!!). There are some well established ways of monitoring and observing communication, but during therapy sessions, Olly appears to be doing something quite different (contrary – some things don’t change!). Olly is giving opinion and answers to a number of questions. Whilst being supported, he does this by moving his head to the left for ‘yes’ and to the right for ‘no’. The therapists have created a unique method to observe his answers, to ensure that they are not using some good old optimism to encourage the right responses. We are mid assessment with a week to go. In other sessions, Olly has chosen colours and sounds and, using a specialist spelling board , on one occasion spelt his own name. There is a lot going on in that head of his!! We’ll update again on that.
The therapists are very forward thinking and are always seeking and trialling extra help and sessions. We are looking at establishing regular hydrotherapy and will be trialling some professional music therapy early in the new year. Both of these two activities will initially be supported by Peas & Glove. Water and music will be a strong combination and could really bring on his progress.
John, the cranio-osteopath, paid for by P&G, continues to see Olly on a regular basis.
Earlier this year, Mille married Rhiann at Greve de Lecq. As an amazing and selfless gesture, they donated all their wedding present money to Peas and Glove. That was well over a thousand pounds. We have also had another couple of sizeable donations and we will look to use all three amounts to support music and water in particular. I hope our kind benefactors approve. There are indeed some beautiful and generous souls in Jersey.
We are hoping 2018 will be a positive year. Under advice we have taken on the services of a case manager to look at everything about Olly’s current care and life and perhaps, more importantly, how we put together Olly’s return back to Island Life. Yes! that’s the plan. But as you can imagine, it’s complicated. But wouldn’t it be great to get him back to the beach, to smell the sea, feel the sand between his toes and be back with friends and family? By having a case manager, it has meant that many of the responsibilities we have been undertaking will be handed over, and we can get on with being his parents, family and friends again.
We are now three years into this journey. At times if feels longer. But we all keep going because he keeps going. He is unrecognisable from where he was when he last left Jersey in February 2015. He has put weight back on, his wounds have healed and his hair has certainly grown! Among many others, there is a message on his bedroom wall
‘The man at the top of the mountain didn’t fall there, keep climbing’.
Best wishes to one and all
Peas and Glove
Sent from my iPhone
To All Peas & Glovers, friends, supporters, and family
As we head towards late summer it seems a good time to reflect on the past few months and to update you on Olly’s progress. To also let you know how some of the money raised has been used to enhance the therapy and care Olly is currently receiving.
Firstly, we believe Mr Matt Daly should receive a knighthood. So if anyone has any clout in No 10 or Buck House please make yourself known! Daly has worked tirelessly, often with very emotional and upsetting things going on in his own life, to keep Peas & Glove going for another year. Whilst we firmly believe that the spirit of P&G will always be there and a help to some, being responsible for organizing events, giving interviews, and ensuring the online store got updated and stocked is hidden work that he takes in his stride. Certainly, Permanent Ollyday 2017 back in May was testament to his determination and abilities. He also had Brontey sitting on his shoulder who gave ideas from her experience running these amazing annual events. She remains an important stakeholder in this incredible journey.
Ollyday 2017 was again a brilliantly attended day with some incredible musicians and acts giving their time and talent to make the day as memorable as the last two. For the first time we also facilitated a virtual ticket for Olly. By the power of Skype Olly was amongst the crowd to watch The Progressive School of Music choir plus a few extras sing their rendition of the P&G national anthem ‘Permanent Holiday’ by Mike Love. A very special extra mention to the PSM Choir as they chose Peas & Glove as their annual charity and raised an amazing amount of money. Thank you all for your generous gesture. Best choir in the land!!
Mike Love – now there’s an interesting story. He was scheduled to play at this year’s Boomtown Festival. Armed with that fact it became a mission to meet him and thank him for the personal video he sent in 2015. There are pictures to prove it – have a look on the Facebook and new Instagram pages (@wearepeasandglove)– Daly, Haycock and Hanna met & talked with Mr Love and have invited him to Jersey. Watch this space!! 😎
So, what are we doing with the money raised? Well, so far in the last twelve months we have bought Olly a new motorized wheelchair, an iPad and we continue to fund the services of an amazing Cranio Osteopath – Mr John Silverstone. The wheelchair has made a huge difference to being able to get Olly around, has improved his posture and in its usual position puts him at eye level with most people around him. His progress this year has generally been positive with improved awareness and communication via the Eyegaze technology he has (also funded by P&G) and the hard work of the resident physios and therapists. Olly works with binary ‘yes/no’ answers to a multitude of questions with increasingly more accuracy in his answers and responses.
We think it is important to also mention the bits that didn’t go so well. Olly has had a couple of episodes this year where he has ended up with sepsis. We spent our Christmas break in Epsom General Hospital High Dependency Unit as he made a full recovery. However, in late March, after a routine procedure, he again became poorly and was rushed to Epsom A&E. Easter and Olly’s 22nd birthday spent in HDU! He had sepsis again but this time with an added complication of pneumonia and a partially collapsed lung. The initial diagnosis wasn’t great, with the consultant having a serious meeting with the family to discuss the seemingly only viable option of giving Olly a tracheotomy and putting him on a ventilator. That was a Saturday morning with the consultant due back to decide at 2 o’clock that afternoon. If you’ve ever been in a hospital at a weekend you’ll know that time seems to elapse without you realizing it and consultants are often on duty on their own and very busy. We’re still not sure if it was luck or divine intervention, but the consultant didn’t manage to get back to see Olly until 7 that evening. In the meantime, he had started to make a strong recovery, so the decision was made that no further intervention was required. Two weeks later he was back to 100% and headed back to the Queen Elizabeth Foundation (QEF) rehab center in Banstead. (Touch wood) he has been very well since. The team at QEF continue to provide a full package of support both medically and therapeutically and have contributed to Olly’s steady improvement.
During the Summer, the Peas and Glove team has run stalls at many festivals, headed up by Sir Daly and assisted by a number of willing volunteers. Reasons to be Grateful, Reasons to be Cheerful, Groove de Lecq and most recently The Weekender. It’s been a busy year.
The online shop is up and running supported by our friends at Lab-6. The message and high spirit of what has been achieved continues to spread and we have seen some great pictures from all over the world. Peas and Glove has come to be so much more than then original idea from a very close-knit group of people looking to do something to support themselves and their friend. It has become a symbol of positivity, faith, and hope for a wide range of people in all walks of life. And in many more parts of the world.
Keep the faith. Keep the loving and caring spirit in your blood. And most importantly, keep yourselves well and smiling even through challenging and emotional times.
Love to all
Peas & Glove