Saturday 14 May 2011

heading to Italy..

There is a very profound quote made by a mother with a disabled child that explains the feelings when you realise the child you gave birth too or were waiting to welcome into your family is not quite the one you order. Her name is Emily Perl Kingsley and it is entitled Welcome to Holland.
  We experienced everything just as she explained and have been looking for ways to re board the plane and finally land in Italy.Thanks to Dr Park and his team and the amazing physios in St Louis that gave Leo the ability to walk. Of course we wouldn't have even got there had it not been for the kindness of strangers and although we cant possibly thank all of you personally know we are truly grateful.
  Leo is now mobile, he walks almost everywhere although he does have some way to go still regarding balance and gait we know at least now he has a chance. The infection that has plagued him since our return is still there admittedly dormant at the moment, We recently had a trip to Leeds General Infirmary (LGI) and got the chance to speak to a UK doctor that has been trained by Dr Park and is hoping to bring SDR into the UK. He arranged for a MRI to compare with Leos previous one taken in March. He emailed the results to Dr Park and they agreed the infection is getting slowly better, There is a lot of inflammation there which explains why Leos' back is so sore to touch and still swollen. He did explain that although the infection is still there going in now to flush it out may well awaken it causing it to be worse than it was before, so we agreed to continue with the meds Leo has been taking. The doc in LGI is keeping a close eye on Leo and has arranged for another appointment in Leeds beginning of June just to make sure its still progressing in the right direction.  He has said if it does flare up then he wont hesitate to go in and flush Leos' back and we are more than happy to agree to his prognosis.
 As many of you are aware Leo recently was crowned Child achiever of the year by the Evening Telegraph


He really enjoyed being centre of attention yet again and loved all the clapping etc, He was given a trophy which now stands pride of place on the telly in his lounge in full view to admire . 
 I saw in the ET there is another little boy close by just starting out on the SDR route and we wish the family all the luck in the world  xx