4 Weeks on – 5th Dec 2011

Here we are then 4 weeks since the DBS surgery, and still things seem to be moving forward albeit at a much slower pace now (not 100% sure if improvements have slowed down, or it may just be the case I am with Robbie 24/7 so I may not be noticing the changes as much)

Robbie is now back to school full time without any issue, and indeed is even looking to get his pre-arranged 2.30pm finishes moved out till 3pm like the rest of his class. In order to allow the school to arrange a support teacher for these hours, I guess we will probably be looking at the New Year for this to be arranged. Robbie originally had these early finishes implemented as he grew very tired in the afternoons due to his dystonia, however since the op tiredness seems to be less and less of an issue, and as the weeks have passed since the op his stamina has improved.

Another area I have failed to mention in previous blogs since the op is his speech, prior to implant Robbie would often wander off into a daze during conversations and was very easily distracted, and it was the case his talking was quite slow and very quiet, like he was taking a long time to think how he was going to answer before doing so, and the quietness seemed to be attributed to low confidence, however since the op his speech has become much clearer, and these pauses seem to have substantially reduced in the time being taken to answer anything that may be asked of him, and the volume of his voice seems to have increased also suggesting his confidence levels are on the rise... all good stuff...

Robbie’s upper body and posture has continued to improve with both arms and hands again showing much less dystonic posturing, and his skills on co-ordinating both arms together is also much improved... It now seems Robbie is becoming accustomed to his new found movement abilities in his upper torso and is learning how to use these abilities gradually more and more every day.

Unfortunately he is still having major problems with one of his legs where in his words he states “My Knee wont bend when I try to walk” this is still preventing Robbie from having the total independence he is constantly striving to reach, that said we are back to the Evelina (London) on the 9^th Dec (Friday) so I will make this a topic of conversation then, I am still confident as adjustments to settings, physio etc are made over the coming months there will be some improvement still to come... It is still very early days.

Just the one gripe this week, and that is the local health board physio and occupational therapist, neither of whom I have had much success in contacting since the op, despite both having a copy of Robbie’s discharge report. Did get a breakthrough on this on Friday when the occupational therapist eventually returned my call 3 weeks after I originally tried to contact her... She is going to give Robbie a school visit on Wednesday this week, and is also going to chase the local physio to arrange to see Robbie again and look at his needs in relation to possible physio. Again for a second time I am seriously considering a letter of complaint to my local patient relations team here in Fife, one thing I have learned throughout this ordeal is if things aren’t moving quickly enough don’t be afraid to stand up and be heard about it, it does get results and often starts things moving a bit quicker... we will give these people a week and then start the complaints process in the absence of contact from either party.

Robbie and I are off down to London on Thursday for his first review on Friday, not really sure if the DBS settings will be adjusted, initial indications from the team at the Evelina were the settings would probably be left unchanged if any improvement was apparent (which it certainly has been) however after speaking with several parents who I now have the luck of knowing whose children have been through the procedure all have advised their children’s settings were adjusted at their initial review... either way I am not really fussy as I know this team will do what they feel is best, I trust them all 100% and know they are doing what is best for Robbie, and at the end of the day they certainly know what is best practice.

Christmas is very high on the agenda in the household just now, which brings with it one very simple but significant example of how Robbie has improved, he can now come down the stairs every morning and open his own advent calendar unassisted, something he certainly wouldn’t be able to do pre-op due to the lack of control over his fingers, he now can and does with great excitement, speed and anticipation of the chocolate shape lying within... (three advent calendars is a bit excessive but hey we can put this down to allowing him to practice his finger movements, let’s call it physio J) This change may seem very, very small to some, but in my eyes is a massive leap forward to my wee hero, just wait for the presents on Christmas morning – oh the fun we will have then.

In summary all is good in the Ovenstone household, we are all feeling fantastic and we are so happy with how Robbie is progressing, since the surgery life has become much easier to cope with and everyone seems to have that extra little spring in their step.