8 Weeks Today – 03 Jan 2012

So here we are at the 2 month post op point in this journey, It has been another good week with the exception of one evening late in the week, last week.

Robbie continues to exploit his new found independence and there really seems to be no stopping him now, he had his first attempt at doing the dishes last week, something he could never have done post-op and he managed these so well, this is now his regular task (really no complaints there then)

As I said we did have one evening last week, where we got a real fright, and this was to prove to be a real wakeup call and serve as a stark reminder it is indeed the DBS which has caused the huge improvement in Robbie. To be honest he had really been active most of the day, more so than he is accustomed to, and I think tiredness could have played a major factor in this episode, we noticed he started getting quite stumbly again in the evening and we decided it was best to get him in the bath and get his pyjamas on, by the time he had got out of the bath and dressed, his dystonic posturing had returned with a passion, and he was really struggling to stop the involuntary twitches, indeed his speech also seemed to have been affected (something we had never experienced pre DBS)... On the positive side this episode didn’t seem to upset or worry Robbie, but it did cause almighty concern to us after seeing so much improvement over the last couple of months... Thank goodness when he woke in the morning all was well again and there has been no repeat of this episode as yet... It does suddenly enlighten you though the Dystonia is masked by the DBS and it is waiting there in the background.

We also routinely checked his battery etc just to ensure the stimulator hadn’t been deactivated however this was not the case, hence we can only imagine he had totally burnt himself out and the tiredness was a contributing factor.

We are back to the Evelina on the 13^th Jan so we will obviously mention this episode to the team.

Other than this episode things seem to be progressing really well, indeed Robbie has been out playing in the garden most days this week despite the cold, his little sister is absolutely loving having her brother back out playing with her again, and taking part in play... It really warms my heart to be able to see him doing these simple things again, they mean so much to us all now.

I have applied for a barge trip for Robbie in February, where will be sailing the seven seas (well the forth canal actually) but it should be fun, and will allow us to see if he likes boats and if so there is a longer trip available which we will contemplate when we see if he enjoys his short trip, it is good to start planning things we simply could not do before. We have also spoken to a local riding for the disabled group to see if Robbie can have a shot of horse trekking in an effort to find new interests for him... On top of this again he also starts swimming lessons next week... so things are really on the up and up, especially so when you think two months ago we would probably not have considered any of the above activities for Robbie, so yes DBS has definitely improved Robbie’s quality of life (Just means Dad has to be a taxi most nights of the week – nothing new there then)

After all the grief with the press last week, we had a presenter from Daytime TV show on the phone this week, asking if we would come down and appear on the show, at this early stage after being so overwhelmed with the press coverage we have declined the offer at this point due to the stress it would cause the family, we may revisit this option at a later date to raise awareness of the benefits of DBS... Very much a bit of in two minds after the press coverage letdown.

I would also like to finish and give a special mention to a little girl called “Chelsea” who today is going through her DBS procedure at King’s (I wish you guys the very best for her)