2011 is shaping up to be a particularly challenging year for Adam. As well as his ongoing talipes treatment in Manchester, it is now clear he will need surgery on both his hip and his knee in the next few weeks. Following a minor accident at school when he caught his foot on a door, a medical assessment has determined that his hip is once again dislocated. We are due to meet with surgeons in Bristol shortly to discuss the matter further, but are working on the presumption that he will once again be in a hip spica cast for several months. This is a daunting prospect, not least because he is much heavier and far more mobile now than he was when he first had hip surgery in 2007.
Update - 14th November 2011: It has now been confirmed that Adam's hip is dislocated and that he requires further surgery. This is likely to be early in 2012. It has also become apparent that even with his lycra suit, Adam's spinal curve is continuing to increase.
Update - 16th November 2012: Adam's hip surgery went ahead in April 2012. See Latest News for details.
Unfortunately it seems that spinal surgery may now be required. However the hip surgery will take precedence and so any spinal operation will not be until at least the middle of 2012. In the meantime we are exploring non-surgical alternatives to halt and hopefully correct the curve.
Bed time for Adam is also proving to be an ongoing problem. Both Cornwall Council and the local NHS Trust agree that Adam requires a special bed for support and safety reasons. Unfortunately, each believes that the other should fund the purchase, this despite the fact that the NHS Primary Care Trust has already purchased a sleep system for the non-existent bed. This sleep system is presumed to be currently gathering dust in an NHS storage facility, while Adam's father Paul spends between 30 minutes and 2 hours a night ensuring that Adam gets to sleep safely. While we remain hopeful that the situation will be resolved eventually, it is becoming increasingly likely that we will have to fund the purchase of the bed ourselves.
Update - 14th November 2011: Following a generous grant from the charity New Life, we were finally able to purchase (jointly with the NHS Trust) a specialist bed for Adam. The bed, a Centrobed Bali, can be adjusted to suit Adam’s specific and ongoing needs. Adam loves his “car bed” (the bed is decorated to look like a sports car) and frequently asks to play in it during the day.
Unfortunately the sleep system that was purchased for Adam has now been deemed by his health professionals as inadequate. We await details of a different system which hopefully will better meet his needs.
Update - 16th November 2012: Adam now has a Sleep System. See Latest News for details.
On a brighter note, Emlyn Stone and his team have done a splendid job making our garden wheelchair accessible. These photographs clearly show how much work has gone into the modifications and just how different the garden now looks.
Adam is delighted that he is now able to play in the garden and is especially pleased that he can now reach the outside tap...
Along with many families with disabled children, we were at the Eden Project on 12th February 2011 for a celebration of the success of the Muddy Shorts scheme. The scheme, a collaboration between Barnardos and the Eden Project, is financed through Cornwall Council's 'Aiming High for Disabled Children' programme and has provided a series of play-days across the County to allow children with disabilities to access the natural environment with the emphasis on adventurous and inclusive play. Adam particularly enjoyed the chance to spend time on the ice rink at Eden.
Unfortunately, funding for the Muddy Shorts scheme is due to finish at the end of March 2011 and at the time of writing there is no news regarding whether any further financing will be made available. We all hope that the scheme will continue in some form or another as it has definitely been of benefit to Adam and indeed the rest of our family.
Our Photo Gallery has been updated and two further pictures of the day at Eden have been added.
UPDATE - 14TH NOVEMBER 2011: We are pleased to report that further funding for 2011/12 for the Muddy Shorts scheme was subsequently obtained from Cornwall Council and the team are continuing to provide innovative and enjoyable days out for disabled children and their families.
In October 2011, Adam and his family flew to America for an extraordinary holiday. Thanks to the generosity of the Make A Wish Foundation, Adam got to meet Mickey Mouse. For full details and pictures, see Adam's Wish Come True. More pictures can be found in our Photo Gallery.