Three Weeks On – 28th Nov 2011

It has been a rather good week overall, started last week when Robbie was working on some homework we had arranged for him via the school, my findings were rather enlightening on just how frustrating Dystonia can be, what I found very early in the outset of the week was Robbie could manage his work mentally without any issue, although his main problem seemed to be in being able to actually write down his answers, in essence Robbie knew the answers to the problems, but actually managing to write the answers down caused him great problems, and he found this very frustrating. At the early part of the week Robbie really struggled to get the answers down on paper, however really encouraging later in the week was he is finding this easier as the week went on. It is the case he now seems to have more control over his arm and hand movements, and his work improved dramatically towards the latter part of the week as he practised more and more.

We also attended a meeting at the school at the end of the week to see about Robbie going back to school, in attendance were his support teacher, and a couple of senior teachers at the school, and overall it was decided (as we had hoped) that Robbie would return to school on Monday (today), doing a couple of half days initially to allow us to gauge how he coped, then with a view to getting back full time later this week... I have to say Robbie’s school is a mainstream school, however they have been very supportive and accommodating throughout his time at the school, it really is a place where I can drop Robbie off in the morning and know it is a place where he is safe and cared for. They also have a support plan in place looking at ICT specialists, and Robbie’s day to day needs.

Overall I am now confident we are seeing changes in Robbie, he certainly is using both hands in a co-ordinated fashion more than he was ever able to do since the dystonia started, he has not complained of pain caused by dystonia since the DBS took place, (he did complain of a sore neck the other day but I think this was more to do with the way he was sitting on the couch rather than any dystonic pain), however walking is still proving to be a challenge, and Robbie still needs a hand taken when he walks although he is still trying to go unaided with little success thus far... that said he seems to be getting a bit more stable and we continue to push him where possible to keep him moving and we try and make him be as independent as possible, again though he is managing to get about a bit easier now than he was at the start of last week so again I do believe there is improvement being made.

I feel deep down this surgery has certainly benefited Robbie so far, and I am confident as he learns to find new ways to use those muscles no longer trapped in dystonic postures he will improve further, it is so exhilarating and miraculous to see Robbie improving day after day, after so many months of watching him deteriorate and getting worse, every small improvement is a true blessing and a major step in the right direction for us.

In summary, the benefits so far which are clearly visible to me now, would be the correct posturing of his right foot, which happened since the surgery took place and the absence of the dystonia related pain, again since surgery. Use of his hands and fingers is certainly improving, with much improved control, and much less in the way of dystonic posturing, he is using his right hand now something he never did before, walking is improving albeit much slower than the arms and hands, again this may be a confidence thing as when he falls he has great difficulty getting back to his feet. Charging and checking his battery unit are firmly Robbie tasks now although Mum needs to help him place the charger and use a scarf to hold it in place (maybe because he seldom sits still long enough to keep it in one place!)

So if you were to ask me three weeks down the line would I recommend DBS, I would say with absolute confidence YES... this is certainly the way to go.

Robbie’s scars are healing well, and pain from the surgery no longer seems to be a problem, he has had no pain medication for over a week now... most encouraging of all, he went to fight with his teenage brother Rhys over the weekend... surely a sign things are getting back to normal !!! With Christmas only 4 weeks away we are determined as a family this will be the best one ever