It has been yet another fascinating week recovery wise for Robbie, and a week also filled with a few mixed feelings for us as his parents...
At the outset of Robbie’s dystonia I found myself in the position where he had been diagnosed with a condition I was totally unaware of, and as I spoke to other people who have experienced the condition the common theme amongst them all was both the length of time it had took to reach a diagnosis, plus several also talked of having no prior knowledge of the condition, as such I had decided I wanted to raise awareness of the condition to the general public, this I decided to do via a couple of sponsored events I became involved in trying to raise funds for the Dystonia society, and also through the local press, and a small item on our local regional news... in the run up to Christmas the local reporter who I had dealt with throughout the whole process called and asked for an update, and obviously as we are currently seeing such improvement at this time the reporter asked if we minded doing a follow up to his story as the first piece had been post DBS, little did I know this story would hit the front page of the local press, and a fantastic piece was put out (which I am advised should be available on the Fife Today website later today 27/12/11)
So this was the positive side of the story, however at 8am the following morning the national press called and asked if they could do some photos etc as they wanted to feature Robbie’s story, I now understand what they mean about the press hounding you for a story (I am sure I spoke to around 10 reporters that day), and sure enough the following morning Robbie was featured in all the UK national papers (The Sun, The Daily Record, The Star, The Scottish Daily Express etc) This was really quite breathtaking to see all these pictures of Robbie plastered across all the daily tabloids and know we were getting the awareness out there, however they failed to hit a couple of actual points I wanted to get across about how this success had come through his DBS, and they also forgot to mention the great work the Evelina Childrens Hospital have done... and the Dystonia society never got a mention, all of these points were covered but the tabloids seemed to decide these were irrelevant ?
Also, and maybe more importantly so, I think I had an awakening with all this coverage about how would Robbie feel about this, just now he just takes it in his stride and gives a kind of disinterested smile when you show him the articles, but I have this concern at the back of my mind will he still want this attention as he gets older... I am left with this feeling that this whirlwind of attention just got so out of hand so quickly and the actual story and message you want to get out to the public just gets lost on the way, as these reporters clambered to get the story out first, it seemed to be the case they wanted the bare bones of the story, and they put the rest together themselves (Lesson learned – If I deal with the press in future it will be on my terms and I will not be pressured into giving them bullet points and leaving them to fill in the gaps)
Most of these items can be viewed online (Just type Robbie Ovenstone into google and there you will find it)
Anyway rant over about the press, and back to Robbie, Christmas was absolutely wonderful and we all had a ball. Robbie was first up around 6.30am he came into our room, shouting “It’s Christmas” and sure enough his little sister Chloe was only seconds behind him, his teenage brother took slightly longer to appear (as you would expect from your average teenager) and off we all trotted down the stairs to see if Santa had been, sure enough on opening the living room door the room was full of neatly stacked presents with three corners of the room being occupied with gifts for Robbie, Chloe and Rhys respectively. The excitement clearly shown on all of their faces would have touched anyone’s heart and all set about getting into their presents... this was good to see as previous to the DBS Robbie always needed a hand to open his presents, this year though the story was oh so different, he got right down to business and got in about his presents with much less trouble than in previous years. Indeed he finished the unwrapping long before his little sister, something which has never happened before.
Robbie is getting more skilled on a daily basis and seems to be developing improvement in his fine motor skills more and more every day, some of the muscles which were affected with the dystonia which he now seems to be able to control are coming into play more and more on a regular basis, he really is doing fantastically well, main areas of improvement are stability (he seldom stumbles and falls now, where as he used to really struggle to walk or even stand without falling), he is also feeding much better having much more control when holding a fork or spoon (although still can be a bit messy sometimes) as for the next conquest, I believe he wants to manage stairs however still not 100% confident to let the reins go on this as yet, and we still insist he asks one of us to be with him when he challenges these to go to the toilet (not necessarily to hold his hand anymore, but certainly to be there behind him in case of a fall) He really is going from strength to strength.
He is also becoming a bit more independent when walking and gets frustrated when you ask him to hold your hand etc, by simply replying “I can do it myself” so good to see him determined to manage unaided, albeit we are still a bit away from him managing alone, and distance still seems to tire him out.
Certainly I now understand it takes time for the brain to adapt to changes in the settings of his implants, and I can now fully understand how his body needs to learn to use the new control he has over certain muscles, and these changes all take time and practice to show improvement, which is an ongoing process, certainly what I am aware of most is this little lad is slowly getting more mobile and confident on a daily basis, and ultimately he is still heading in a positive direction, something we haven’t seen in several years, this really is like watching a miracle slowly unfold before our eyes, long may it continue, this has now given our son a new confidence and self belief and is making him a much stronger person, regardless of where this journey eventually leads us we will always be there to catch you should you fall. We love you Robbie
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