After the completion of the house adaptions (Mission 10), we ran short of money and so are currently living with a lot of mud and rubble in our garden! This in not ideal for any of us but particularly means Jake cannot access much of the garden at all. Newlands Primary School in Southampton has generously agreed to raise funds for Jake and we recently visited them. We will be pledged all funds raised by them into finishing the garden. Ideally this will be with astroturf that will be nice and level for Jake to get out and enjoy!
We’ve always known that Jake is a clever boy but unfortunately, due to his Cerebral Palsy, we know that generating speech will be really difficult for him. He’s always had speech therapy and in recent months Jake has trialled an eye gaze unit, which may eventually help Jake to communicate using just his eyes! He has also been using a ‘string switch’ that allows him to use a very fine movement with his finger to activate a pre-recorded message; this enables Jake to make choices more consistently. This is a massive mission that will take a lot of time to figure out. Jake will continue to visit a different school to use their eye gaze unit as he learns how to use it more effectively.
As Jake is getting older and bigger we have begun to realise that our house isn't really suitable for all of Jake's kit or indeed even that accessible for him, so, after more than a year in the planning we are about the embark on building Jake a new downstairs bedroom and bathroom. The major building works mean that we all have to move out at the end of June (2104) and will hopefully be back in our 'new' house, with open plan kitchen and living space ready for Christmas. We will keep you up to date with pictures of our build as it happen... wish us luck!
Mission accomplished! We made it back home for Christmas, Click here to see the photos of the house.
We started the facebook page mostly because it was the best way to update the latest news on the website. Since then we have realised it is a great way to interact with news and photo's of Jake as well as offer support and advice to other families, we might even have the odd moan and groan! This is something we really value and try to post at least once a week. The support we feel from posting a picture, lovely comments or even a simple like is heart warming and we really appreciate it! So help us spread to reach 1000 people by the end of 2014!
The first nursery Jake attended proved to be quite a negative experience for Jake and all of the family and Jake was ultimately excluded. This was a particularly low point for our family and we needed to find a new place for Jake to attend, we found Saplings. They have been the silver lining to that particular cloud and we cannot thank the staff enough for their efforts and support with all of us. We wanted to give something back and upon hearing they were following our path in exchanging old mobile phones for new technology, we found a way. We have continued to gather old phones since Mission 3 and managed to get 90 phones together to donate in exchange for a laptop. We are proud to be able to give a little back to the amazingly caring team at Saplings and hope that many other children will benefit from Jake's Mission!
Since starting Jake's Mission one big goal for us has always been to get Jake some private intensive Physio as we feel this will greatly benefit him. Unfortunately, the average cost of this is about £4000 but thanks to all of your support we are now in a position to be able to fund it. The next big hurdle is finding a suitable programme...It's a minefield of places making amazing claims about what they can achieve, funding battles and simply finding a place that we think will do the best by Jake. We have recently visited the Bobath Centre in London, who are a well known leader in the treatment of Cerebral Palsy, as well as looked into buying more hours with his current NHS Physiotherapist (who is amazing!). We are also going to have a consultation at the Footsteps centre in Oxford and then digest all of our options before embarking on a programme. We will keep you posted with all of our latest adventures!
Jake has been visiting the Footsteps Centre in Oxford for some highly specialised (and very clever!) Oro-facial Neuromotor Therapy. We went for his first block of four sessions back in the Autumn of 2012, we started to work on massaging his facial muscles with the goal of relaxing his face to help him to close his mouth. This in turn would help him to swallow and maybe even produce more sounds. His therapist Anna shows Mum and Dad how to massage Jake's face and we do this daily in between our visits to the centre. We have been amazed with the results. Jake's mouth is now closed much more and his smile is definitely wider! We started our second course this August and Anna was very impressed with his progress over the last 6 months, Jake's bite reflex is slowly going and his chewing reflex is starting to take over which is great news. Anna also thinks he might be able to learn to drink through a straw in the future! The hard work is yet to come as Anna wants to get deeper into Jake's mouth, massaging his tongue, palate, gums and jaw muscles... Although this is really hard work for Jake he is brilliant and shows so much determination and patience during the sessions, he seems to know that the hard work will be worth it in the end!
We all went to the Bath Institute of Medical Engineering on Tuesday 19th Feb to pick up Jake's Wizzybug. He loved it straight away, his arm control and concentration were amazing and his smile was pretty wide too! We can not thank BIME enough for their help, the Wizzybug is an awesome bit of kit and they all really understood Jake's need for independence. We would also like to mention James and the fantastic fundraising he has done to help Jake get his Wizzybug, thanks James, you're brilliant! We can't wait to get Jake out and about and Wizzing!
Although most parents shudder at the thought of a shopping trip with a toddler, taking Jake to the supermarket has been a real struggle with no option for getting him around safely and comfortably. Back in April, Mum saw a Cerebra innovation that could solve this problem. After 8 months of phone calls, inquiries and general pestering, Jake has been invited to test a prototype for the Leckey Trolley Buddy. A massive thanks to Leckey for enabling Jake to visit the supermarket (and making Mum very happy!)
A charity called Hearts and Minds set the challenge to help children with additional needs so we set about collecting. Our friends were amazing at digging out all of their old phones for us and we reached the target with no problem at all!
Due to Jake's posture issues he needs a lot of support sitting safely and comfortably so a conventional bike seat won't do. We needed a specially adapted trailer for him, which was very expensive!
Thankfully a charity called REACT fully funded his amazing Bike trailer and we are off cycling and loving it!
To thank the Paediatric Intensive Care Unit at Southampton General Hospital for saving his life. Jake raised over £1000 shortly after leaving PICU, by instead of asking for Christmas presents we asked our friends and family to donate to PICU instead.