11 Weeks Today 24th Jan 2012

We are now 11 weeks since the operation and Robbie is continuing with good progress and becoming more and more confident, that said we have had several bumps and bruises along the way, as you would expect from most, if not all 6 year olds... as you can see by the bump in the picture below he gave us all a scare in the middle of last week where he banged his head so close to the DBS scar, Robbie got over his initial fright quite quickly, then continued to run and play tig... so obviously his fright from the fall was much lesser than ours.

Swimming lesson 2 was on Monday and his movement in the water seemed much more relaxed this week, still a little way to go before he is independent in the water but he is progressing well. He is moving freer in the water, however you can still see slight dystonic posturing in his hands when trying to move all his limbs together, I am sure as we practice this more and more he will gain control over these movements or alternatively find his own way round these issues and adapt his own unique style which he has had to do in most things in life.

Robbie had a concert at the school yesterday for Burns day (Hence the blog is a bit later this week as I wanted to add some footage (Robbie can be seen on the far left) this was again a very proud moment as this was the first time Robbie hadn’t needed his wheelchair for such an event... a real achievement for him.

Other than this Robbie’s 7^th birthday is just a few weeks away (14^th Feb – yes our Valentine’s day baby) Initial thoughts are to get him a bike and attempt to get him out there riding around again (a steep challenge he hasn’t been able to do this since he was 4 and the dystonia struck) I am confident with the right encouragement and praise Robbie will achieve this again... especially so, given his recent new confidence and mobility and fine motor skills improvement still being shown.

There is also development in the dressing himself front, in that we are now really pushing Robbie to dress himself of a morning, this is improving well and he is also getting much faster than he could originally do, so despite us sometimes feeling we are being a bit hard by making him struggle on, it is in his own interest we are doing this, hence it will continue.

We are also going to be focussing on Robbie's fussy eating over the next few weeks as he is currently very difficult to cater for, as he likes a very few specific items, this is set to change over the next week or so as we do intend to at least make him try some new things in order to broaden his food likes... I dare say this may be a bit trying for all concerned however this again is about Robbie's long term benefit and as such we will persevere on with this. Having spoken to a few friends who have experience of dystonia it has been suggested that different textures of food may be an issue, hence we will try to keep food textures much the same with specific meals, looking forward to him trying all these "new" foods.

Robbie is still doing well on his Sinemet reduction trial and we are mid way through the second week of this, so far really good and we have seen no adverse effects from the timed withdrawal of the medication, indeed on thursday this week Robbie will swallow what we will hopefully be his last ever Sinemet tablet (fingers crossed) and hopefully at our next review meeting at the Evelina, we can start looking at his next medication to be removed since his surgery... 

It does seem we are forever pushing Robbie on many, many fronts, however this is the case as we want him to be able to lead a good quality of life, again this wee lad is doing remarkably well and working with us to make these changes happen and learn new skills, and we pray this continues to be the case.