Hope no one minds me posting on here, but I have been a member of this amazing group for over a year now and have often read parents writing that SDR changes lives . I have followed their amazing stories that almost do seem Impossible to believe that their child can be almost be cured of the symptoms of cerbral palsy and suddenly do what they never thought would be possible . I have also read of how everyone speaks of Dr.Park and the team at SLCH and thought wow why do they all speak of this doctor with such love admiration and talk of him as if god like and then go on about the hospital and the sdr team how they all do ...well... My son had SDR a few weeks ago at SLCH by the hands of Dr. Park and William has been supported by an amazing dedicated team of true professionals here in St. Louis and Now I know why :) ...parents have spoke with such love , respect , gratitude, deep emotion and utter amazement of the outstanding service SLCH provide for our children ,now it all makes sense for I have experienced it and truly beleive no one could receive any better care for themselves or their child . My son prior to surgery his spasticity was so severe he could only crawl short distances by bunny hopping but would tire easily , he tried walking with his walking frame with me pushing the frame but the longest he could ever walk is 10 metres scissoring on a good day and in discomfort despite tireless stretches through out the day ,even with baclofen and physio his spasticity just worsened with growth and at just four I knew the severity of his spasticity despite all my efforts would totally cripple him if left him any longer . SDR was not a easy decision for me having watched William fight for life at 27 weeks gestation having suffered diagnosis of PVL ,spastic quad ,level 4 on the GMFS , 3rd degree brain hemoridge at birth ..the list is endless but despite the fears and lets face we all have them I can promise you and to any parent embarking on this SDR journey that it is ALL Worth it ..my son can now untie his shoe laces, take off his top , get himself out of bed and stand holding onto the side ,walk over 100 metres with assistance still in his walker and with some stops but he does it without pain and No scissoring, and this is just a few weeks after SDR so if he can acheive all this after the operation after just a few weeks the mind boggles to what his future holds despite his diagnosis and the original prognosis of his future being so bleak ad limited ....its truly amazing to see my son do things I never thought possible and it feels amazing to finally be able to share our story and feel the love and gratitude toward the amazing people involved in this overwhelming journey ..which I now join in on the praise and know it is genuine.. We set back home early next week with a heavy heart for I know sadly we will not be receiving the care and service we have received here ..back home in the uk ..why ..I do not know for SLCH could teach all hospitals to run so much better with their experience and work ethic . Alls I know is I wont ever forget this experience despite some bumps in the road for my son could not of been In safer , kinder , more experienced hands than that of Dr.Park and his fantastic team . So To any parent out there considering SDR please dont hesitate any longer , fund raise like I did, do what ever it takes to get to st .louis childrens hospital , but dont hesitate ..SDR really does CHANGE lives and not just the cerebral palsy sufferer but the entire family and loved ones who have to witness the pain and suffering cerebral palsy causes . Eternal thanks to all at SLCH , the physio team and all the staff involved in the entire process and of course to Dr.Park who we will never forget . He goes way above being a doctor when it comes to patient care and is one of the best in the world at what he does ...THANK YOU and also thanks for all advice support this wonderful group gives, the great friends I have made and all the inspiring parentsandtheir kids... without it ..we wouldnt be here now ... :)
Posted on: Thu, 11 Dec 2014 14:24:20 +0000
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