Adam continues to make a good recovery from the scoliosis surgery he underwent in November 2014 (see 2014 News), although he still tires easily and spends much of the day resting, either in bed or in his supportive P-Pod seat.
To assist us during this period, our local NHS Foundation Trust arranged a care package with Stay at Home Ltd, whose professional carers have visited regularly to assist with day care and to watch over Adam during the night, as he needed to be moved regularly to ensure he was comfortable. To avoid the possibility of damage to or loosening of the screws that fix the rods to the spine, Adam has to be hoisted rather than lifted when he is moved.
As Adam grows, the length of the rods can be increased using a system of magnets. Adam will need to be reviewed in at the Bristol Royal Hospital for Children every few weeks for the next three years for the rods to be monitored and adjusted accordingly. During the first of these follow-up appointments (in March 2015), the Spinal Team at Bristol advised that all appeared to be well with the rods.
Following a lengthy analysis and consultation, Adam has been diagnosed as having Autism Spectrum Disorder (ASD). The condition, which it is estimated affects one in every one hundred people in the UK, is characterised by repetitive and restricted patterns of thoughts and actions and by problems with social interaction and communication.
During the Summer Holidays, Adam took part in a BF Adventure Day, organised by CAAP (Cornwall Accessible Activities Program). BF Adventure is a charity and outdoor activity centre based near Falmouth in Cornwall, which aims to inspire, challenge and motivate disadvantaged and disabled people in Cornwall by teaching them skills and by participation in exciting activities. Adam enjoyed himself immensely, particularly the zip wire, which he undertook along with his beloved toy dog, Duncan. To ensure Duncan’s well-being, the instructors were very careful to ensure the dog had his own safety gear.
Adam also tried canoeing and is pictured below with his friend Lauren, paddling across BF Adventure’s stunning deep water quarry lake. The centre is open to the public and we would highly recommend it. For further details, see the BF Adventure website.
Adam's Snapdragon powered chair has been a good and faithful servant which met Adam’s needs perfectly when we bought it a few months after his second birthday. Adam is, however, now nine years old and has outgrown that chair. Adam's needs have also changed, particularly since his back surgery. In order for him to retain a degree of independence and mobility, he requires a powered chair that meets his current needs.
The most suitable chair that we have identified is the Permobil C400 Corpus 3G Lowrider, a chair that offers not only a full range of movement but also easy control and the facility to recline fully to form a make-shift changing table or bed. The chair can also be locked into place in a vehicle, a vital feature for us as in July this year, Adam’s mother Rachel injured her back very badly. She now cannot push him in his manual wheelchair or strap it down when going out in the car, so having a powered chair that can be locked into position will enable her to take Adam out without the need for an additional carer. The control unit on this chair can be configured to Adam's exact abilities and it is low enough to enable him to sit properly at the dinner table. Adam recently tested one (see pictures above and below) and we were amazed and delighted with how quickly he mastered the controls. Adam loved being mobile outdoors and didn't want the man to take it away.
To purchase the chair and the necessary accessories, however, we need to raise around £21,400. We are actively exploring charity applications but, although the NHS have contributed £4,344 via the Wheelchair Voucher Scheme, we still need to make a significant contribution ourselves. A number of fundraising events have therefore been organised to try to reach our goal, including September’s Ride for Adam. Details of all the events can be found on our 2015 Events page.
In addition to the specific fundraising events, we have received many, many direct donations and, once again, have been overwhelmed by the generosity of the friends, colleagues and strangers who have supported us. All those donations are detailed on Adam’s GoFundMe page, where you can track our progress towards our goal.
UPDATE - 22nd July 2016: Thanks to the generosity of so many people, we were able to purchase Adam's new powered wheelchair early in 2016. See our 2016 News Archive for details.