7 Weeks On – 27th Dec 2011

It has been yet another fascinating week recovery wise for Robbie, and a week also filled with a few mixed feelings for us as his parents...

At the outset of Robbie’s dystonia I found myself in the position where he had been diagnosed with a condition I was totally unaware of, and as I spoke to other people who have experienced the condition the common theme amongst them all was both the length of time it had took to reach a diagnosis, plus several also talked of having no prior knowledge of the condition, as such I had decided I wanted to raise awareness of the condition to the general public, this I decided to do via a couple of sponsored events I became involved in trying to raise funds for the Dystonia society, and also through the local press, and a small item on our local regional news... in the run up to Christmas the local reporter who I had dealt with throughout the whole process called and asked for an update, and obviously as we are currently seeing such improvement at this time the reporter asked if we minded doing a follow up to his story as the first piece had been post DBS, little did I know this story would hit the front page of the local press, and a fantastic piece was put out (which I am advised should be available on the Fife Today website later today 27/12/11)

So this was the positive side of the story, however at 8am the following morning the national press called and asked if they could do some photos etc as they wanted to feature Robbie’s story, I now understand what they mean about the press hounding you for a story (I am sure I spoke to around 10 reporters that day), and sure enough the following morning Robbie was featured in all the UK national papers (The Sun, The Daily Record, The Star, The Scottish Daily Express etc) This was really quite breathtaking to see all these pictures of Robbie plastered across all the daily tabloids and know we were getting the awareness out there, however they failed to hit a couple of actual points I wanted to get across about how this success had come through his DBS, and they also forgot to mention the great work the Evelina Childrens Hospital have done... and the Dystonia society never got a mention, all of these points were covered but the tabloids seemed to decide these were irrelevant ?

Also, and maybe more importantly so, I think I had an awakening with all this coverage about how would Robbie feel about this, just now he just takes it in his stride and gives a kind of disinterested smile when you show him the articles, but I have this concern at the back of my mind will he still want this attention as he gets older... I am left with this feeling that this whirlwind of attention just got so out of hand so quickly and the actual story and message you want to get out to the public just gets lost on the way, as these reporters clambered to get the story out first, it seemed to be the case they wanted the bare bones of the story, and they put the rest together themselves (Lesson learned – If I deal with the press in future it will be on my terms and I will not be pressured into giving them bullet points and leaving them to fill in the gaps)

Most of these items can be viewed online (Just type Robbie Ovenstone into google and there you will find it)

Anyway rant over about the press, and back to Robbie, Christmas was absolutely wonderful and we all had a ball. Robbie was first up around 6.30am he came into our room, shouting “It’s Christmas” and sure enough his little sister Chloe was only seconds behind him, his teenage brother took slightly longer to appear (as you would expect from your average teenager) and off we all trotted down the stairs to see if Santa had been, sure enough on opening the living room door the room was full of neatly stacked presents with three corners of the room being occupied with gifts for Robbie, Chloe and Rhys respectively. The excitement clearly shown on all of their faces would have touched anyone’s heart and all set about getting into their presents... this was good to see as previous to the DBS Robbie always needed a hand to open his presents, this year though the story was oh so different, he got right down to business and got in about his presents with much less trouble than in previous years. Indeed he finished the unwrapping long before his little sister, something which has never happened before.

Robbie is getting more skilled on a daily basis and seems to be developing improvement in his fine motor skills more and more every day, some of the muscles which were affected with the dystonia which he now seems to be able to control are coming into play more and more on a regular basis, he really is doing fantastically well, main areas of improvement are stability (he seldom stumbles and falls now, where as he used to really struggle to walk or even stand without falling), he is also feeding much better having much more control when holding a fork or spoon (although still can be a bit messy sometimes) as for the next conquest, I believe he wants to manage stairs however still not 100% confident to let the reins go on this as yet, and we still insist he asks one of us to be with him when he challenges these to go to the toilet (not necessarily to hold his hand anymore, but certainly to be there behind him in case of a fall) He really is going from strength to strength.

He is also becoming a bit more independent when walking and gets frustrated when you ask him to hold your hand etc, by simply replying “I can do it myself” so good to see him determined to manage unaided, albeit we are still a bit away from him managing alone, and distance still seems to tire him out.

Certainly I now understand it takes time for the brain to adapt to changes in the settings of his implants, and I can now fully understand how his body needs to learn to use the new control he has over certain muscles, and these changes all take time and practice to show improvement, which is an ongoing process, certainly what I am aware of most is this little lad is slowly getting more mobile and confident on a daily basis, and ultimately he is still heading in a positive direction, something we haven’t seen in several years, this really is like watching a miracle slowly unfold before our eyes, long may it continue, this has now given our son a new confidence and self belief and is making him a much stronger person, regardless of where this journey eventually leads us we will always be there to catch you should you fall. We love you Robbie

6 Weeks on – 18th Dec 2011

We are now into the sixth week since Robbie’s implant and again a further busy week has been had, it kicked off with the local press taking pictures of Robbie and some of his classmates in order to announce the fundraising the school had done for the Dystonia society to the local community. This should appear in the local press later this week.

Other than this we have had a mountain of school activities to attend for both Robbie and his little sister Chloe, who have now had their nativity plays, school Christmas dinners etc, so there have been several distractions to keep us all amused and to add to the already high spirits that the lead up to Christmas always brings. Just this week’s school parties to go then the holidays are here... so all good on that front.

Anyway back to the matter in hand, as per last week’s blog where I explained Robbie had been back to get his DBS settings changed, we have been astounded by the changes that have occurred by this settings increase, all in a very, very positive way... Robbie has progressed immensely since this change and is now walking in a way which he hasn’t managed for many, many months, no longer is he walking two steps and falling over, hanging on to whatever he can reach instead he is walking much steadier, and seems to be able to balance much easier... to watch him doing this and improving these skills again is heart warming to say the least, and a deeply emotional experience for us all to see this wee man improving each and every day... the strange thing is we never saw any change for the first couple of days, and then he seemed to show an improvement one morning with his left leg becoming less stiff, and he has steadily progressed from there... part of me wonders if this was his confidence growing once the leg seemed to loosen off, then again it could have simply been it taking a bit of time for him to learn to use his leg again.... either way it is truly miraculous to see and witness.

In a similar fashion since the change his hand control seems to have improved further yet again, and he is managing to hold a pencil etc in a very much, less awkward manner, this has allowed him to have much more control over handwriting, drawing, colouring in etc and as such he seems very much less frustrated, and able to get on and do his schoolwork. (We are getting some really good feedback from the school and it seems Robbie is doing really well with his work at this time)

Overall this is by far our best week yet since the op, it really is turning into a really positive experience, and I will repeat to any reading this that may have the opportunity of the op and be in two minds, to go ahead and get it done 100%...

They have basically given this brave little soldier new mobility which he was definitely loosing had the complex motors team not arranged for the procedure to happen, side effects are minimal, his hair has now grown back in and seeing the scars is difficult, pain has pretty much been non existent (that said I still think it is taking him a while to come to terms with the battery pack in his chest – I think it is because he is so conscious of it being there still)

The only other downside is Robbie is patiently waiting for an opportunity to lie down in the bath, he cannot immerse the scars in water for the first two months post op, he can and does have a shallow bath, but can only get wet from the belly down, he was in the bath the other night and announced he is "dying to lie down in the bath" all will come in good time, unfortunately mid January in Robbie's case, this made me chuckle.

Most of all it is good to see Robbie getting better, and believe me it really is good to hear and see him fighting and arguing with his siblings (surely a sign he is feeling much better), he is happier within himself, he will readily go and join in any games where for a long time he just wanted to watch, on reflection this may well have been due to his lack of mobility stopping him from joining in, not now though he is right in the thick of it all, don’t get me wrong we sit watching him with great fear in case he bangs his head or chest but to be honest we realise we cannot wrap him up in cotton wool anymore and he needs the freedom to play and learn again, and he certainly is doing much better.

Uncle Robbie also got to feed his little new niece (Josie) this week, and managed with no issues whatsoever, this was something he would have really struggled with post DBS.

Unfortunately Robbie has picked up a sickness bug over the end of the week, which has slowed him down Fri/Sat but he seems to be past the worst of this by now (Bit like his Dad when he is unwell he feels really sorry for himself – could be a guy thing)

So there ends this week’s update, it really has been an amazing week and we feel this week has been the biggest step forward to Robbie’s progress by far, again all is good in the Ovenstone household. DBS we owe you the world.

Can I also just give a quick special mention to Alison Birkin who has been a true inspiration and rock for me to lean on over the last year or so through the bad times and the good, it is good to share with someone who has been there – thanks Alison, indeed I thank each and every one of you all for the support, kind words and encouragement you have all given during this time.

I also cannot forget to mention my wonderful family who are truly my reason for being, I simply couldn’t ask for a better Wife, children, brothers, sister and parents without whom this time would have been so much harder to face... Money and possessions are nice, but give me my little happy family over these things any day, as long as we can eat, keep warm and have a laugh, cry, play and be happy together then I now realise (years down the line) this is the true route to happiness.

5 Weeks on – 11th Dec 2011

Been rather an eventful week overall, it transpires that Robbie’s Xmas play at school was to be premiered on Thu 8^th and Fri 9^th December, unfortunately Robbie’s first review at the Evelina was also planned for Fri 9^th at 10am, hence we had to leave for London on the lunchtime of the 8^th... this obviously meant he was going to miss both shows, this was a real shame as the school had sent all the kids home with a CD with all the songs on in order to allow the kids to learn the lyrics, maybe a bit extreme but I had copied this and it played every time we were in the car and eventually we all learned the words, so it seemed such a shame to miss out on his show. I discussed with the school that Robbie wouldn’t make either of the shows so they suggested we come in to view the final dress rehearsal on the Wednesday afternoon, so along we went like the proverbial guests of honour, and we got to see the full production from the front seats. It was a wonderful show and we must say a huge thank you to the school for allowing us the honour to not miss out on the show. When you sat and watched the play and the encouragement and support the school staff gave all the children you really see why I cannot sing the schools praises high enough.

Another area I would like to touch on whilst on the subject of the school is that just the week prior to Robbie’s op they decided they would have a “dress down Friday” for the children, the deal with this was the children get to go to school in their casual clothes, and each pay a pound for the privilege, I had spoken to the Headmistress prior to the event being announced and she had asked how we would feel about the proceeds being given to the Dystonia Society, we of course agreed to this and the princely sum of approx £340 was raised, to which the school have donated the remaining funds to make the figure up to £500 !!! Excellent St Maries RC Primary... The local press are taking photos tomorrow (Mon 12th), and Robbie and I will be delivering the cheque in person to the society on our next visit to the Evelina early January.... What a fabulous school !!!

Moving on to the day of travel, train tickets had been bought in advance, unfortunately the weather in Scotland took a very unusual twist and we encountered the worst weather forecast we had seen in many years with gales being the problem, we set off to the station with much concern about the trains being cancelled, it transpired all the local trains were cancelled and as such the long distance trains were the only services running, this meant what we thought was going to be a straight through train with seat reservations and no changes was now going to be a service which had changes, and no seat reservations... as the local trains were all cancelled there was an abundance of passengers waiting to use the long haul service for local connections etc and in light of the fact we no longer had guaranteed seats, we had the wheelchair with us etc I decided taking the train was going to be a major headache, so back we trooped to the car to face the 450 mile journey in the high winds... really a bit tiresome but we made it by 10pm Thursday night to London.

On the Friday morning Robbie had his review meeting with Margaret and Sarah, this first review was primarily a catch up to see how Robbie was doing, establish if any changes had happened as a result of the DBS and also a chance to ask any questions that may have come up since the surgery. Margaret decided she was going to adjust the stimulator settings as both had been set low after the op, this was done without any issue and as expected Robbie felt no discomfort from this happening, time will tell if this makes any further improvements as again the brain has to get used to the new settings and this is when any changes will happen, so fingers crossed on this front, but again a wait and see situation. Sarah had a look at Robbie’s battery pack stitches as he has complained of these being a bit “sore”, she decided she would give the wound a clean and remove a few of the stitches to allow further healing, and to take some of the pressure off the stitches which naturally tighten over time, fortunately I went off to the Savannah ward to pick up a travel expense claim form whilst this was being done hence missed this part, when I returned Robbie seemed quite happy, so my take is it wasn’t too traumatic an experience for him. I feel the battery pack is quite cumbersome and large and as such this is going to take a while for Robbie to get used to. The stitches on his head are now breaking up naturally as they are supposed to do, and he will often present me in the morning with a stitch that will have come out of his head whilst sleeping!

The review lasted about an hour, and all went without any issue, then it was back to the car to head home again, still I feel the worst part of this whole experience is the having to leave home as we all get a bit upset when we are heading off, that said it is for one night only, hence this is not really a major problem, and the benefits of the improvement in Robbie are well worth the short term upset caused to the family unit.

Now we have firmly locked away any thoughts of his next review in January as we ramp up the Christmas excitement, with school Christmas dinner, panto, xmas parties etc to look forward to, not of course forgetting that eagerly anticipated appearance of the big man with the white beard on the 25^th of this month, indeed all is good and bright in the Ovenstone household... Santa did come a bit early with a present for Robbie and Chloe in the form of Tikka and an as yet undecided name pair of budgies... much to Robbie and Chloe's amusment... hard to believe two weeks today and it will be christmas day :)

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.