9 Weeks today – 10th Jan 2012

Again another good week, with very few problems to talk of, in fact there have only been a couple of incidents this week on the negative side.

Similar to last week, we had an episode one evening where Robbie clearly experienced a slight relapse in that his twitching started again, and he again experienced problems with his speech (It seems as though his tongue is twisting causing him to have difficulty when he tries to speak) this episode came off the back of a really mild and unseasonably warm day, where his friend, a neighbour from over the road had come over and played with him in the garden for most of the day, the positive side of this is it is now very clear it is when he gets over-tired this seems to happen, as the same incident he experienced the previous week, was after a similar day where he had played hard most of the day, and he had exactly the same effects, after a good night’s sleep on both occasions all was normal again, hence we are not too worried by these episodes as it seems to be his body’s way of saying “I need rest”... I am sure as he grows stronger and fitter this will improve, however we will closely watch this.

The next episode we experienced which we haven’t seen for a long time was last night, when Robbie woke from sleep complaining of pain in his foot, when asked where exactly, he pointed to his right knee ??? So again one to watch, that said we are back at the Evelina on Friday morning so we will mention it to the complex motor disorder team... A dose of calpol seemed to be enough to calm any pain he may have been feeling and he dropped off to sleep after an hour or so.

On the positive side, when he woke this morning all seems to be well again, so again this may just be a tiredness thing, he is off back to school today after the Christmas and new year holidays, and he is really happy about this, he loves the school and is simply craving the company of his friends and teachers again... long may it last...

Charging is getting to be a bit of  chore for Robbie now, and instead of him now telling us he needs to be charged, we seem to be having to tell him on a regular basis he needs to charge his battery, (I think the novelty of charging has worn off a bit, however he has been told, if you don’t do it daily we will tell Sarah (from the CMD team who we see monthly) and she will give him a row, this seems to have the desired effect, but it just goes to show how complacent he has become with his new found freedom and improved mobility.

As stated previously we are back down to the Evelina hospital in London for his 2nd monthly review on Friday 13^th, which means we leave for London on the 12^th, with a stay at Gassiot House on the Thursday evening, Robbie’s appointment is at 10am Friday, and then it’s the long drive back to Scotland... My thoughts are firmly on what will happen at the visit, the question is will they adjust the settings (personally in my opinion the current settings seem to be working extremely well) however happy to leave this decision to the team who obviously have much more experience in this area than I ever will... I am just of the mind if it is all working well, don’t mess... but as I say this team have much more experience than me.

Overall improvement is ongoing and progress is very apparent, we are loving watching this little lad do new things, things he has never managed previous to his DBS, he is much more mobile, confident and outgoing... this journey has been absolutely miraculous to watch, and it is a joy to behold, currently we feel like the luckiest people alive.