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.

Three Weeks On – 28th Nov 2011

It has been a rather good week overall, started last week when Robbie was working on some homework we had arranged for him via the school, my findings were rather enlightening on just how frustrating Dystonia can be, what I found very early in the outset of the week was Robbie could manage his work mentally without any issue, although his main problem seemed to be in being able to actually write down his answers, in essence Robbie knew the answers to the problems, but actually managing to write the answers down caused him great problems, and he found this very frustrating. At the early part of the week Robbie really struggled to get the answers down on paper, however really encouraging later in the week was he is finding this easier as the week went on. It is the case he now seems to have more control over his arm and hand movements, and his work improved dramatically towards the latter part of the week as he practised more and more.

We also attended a meeting at the school at the end of the week to see about Robbie going back to school, in attendance were his support teacher, and a couple of senior teachers at the school, and overall it was decided (as we had hoped) that Robbie would return to school on Monday (today), doing a couple of half days initially to allow us to gauge how he coped, then with a view to getting back full time later this week... I have to say Robbie’s school is a mainstream school, however they have been very supportive and accommodating throughout his time at the school, it really is a place where I can drop Robbie off in the morning and know it is a place where he is safe and cared for. They also have a support plan in place looking at ICT specialists, and Robbie’s day to day needs.

Overall I am now confident we are seeing changes in Robbie, he certainly is using both hands in a co-ordinated fashion more than he was ever able to do since the dystonia started, he has not complained of pain caused by dystonia since the DBS took place, (he did complain of a sore neck the other day but I think this was more to do with the way he was sitting on the couch rather than any dystonic pain), however walking is still proving to be a challenge, and Robbie still needs a hand taken when he walks although he is still trying to go unaided with little success thus far... that said he seems to be getting a bit more stable and we continue to push him where possible to keep him moving and we try and make him be as independent as possible, again though he is managing to get about a bit easier now than he was at the start of last week so again I do believe there is improvement being made.

I feel deep down this surgery has certainly benefited Robbie so far, and I am confident as he learns to find new ways to use those muscles no longer trapped in dystonic postures he will improve further, it is so exhilarating and miraculous to see Robbie improving day after day, after so many months of watching him deteriorate and getting worse, every small improvement is a true blessing and a major step in the right direction for us.

In summary, the benefits so far which are clearly visible to me now, would be the correct posturing of his right foot, which happened since the surgery took place and the absence of the dystonia related pain, again since surgery. Use of his hands and fingers is certainly improving, with much improved control, and much less in the way of dystonic posturing, he is using his right hand now something he never did before, walking is improving albeit much slower than the arms and hands, again this may be a confidence thing as when he falls he has great difficulty getting back to his feet. Charging and checking his battery unit are firmly Robbie tasks now although Mum needs to help him place the charger and use a scarf to hold it in place (maybe because he seldom sits still long enough to keep it in one place!)

So if you were to ask me three weeks down the line would I recommend DBS, I would say with absolute confidence YES... this is certainly the way to go.

Robbie’s scars are healing well, and pain from the surgery no longer seems to be a problem, he has had no pain medication for over a week now... most encouraging of all, he went to fight with his teenage brother Rhys over the weekend... surely a sign things are getting back to normal !!! With Christmas only 4 weeks away we are determined as a family this will be the best one ever

Two Weeks On – 22nd Nov 2011

Here we are then two weeks ago today we were very stressed, however two weeks since the operation now and things are much easier. 

Robbie is recovering well and the scars still are looking clean and healing well. Robbie hasn’t complained of them being sore much at all, although you can see him scowl and grimace sometimes when you take his right hand (his battery pack is obviously still a bit tender)

Our main focus has been to make sure Robbie is getting into the habit of charging himself every day as we are keen to ensure this just becomes a routine for him moving forward, and also making sure he takes a little exercise and fresh air daily to try and keep him on the move.

We are contemplating putting Robbie back to school next week, in order to get back into a normal routine, he got a lovely surprise from his classmates through the post the other day, when a big A4 envelope came through the post, and it contained about 30 handmade get well soon drawings from each of the pupils, some of the messages in the cards were absolutely fantastic to read out to him, and again as I read the cards out to him, all I could feel was that oh so familiar lump building in my throat, we were all really touched by this kind gesture from the school, it truly is unbelievable how many people are wishing the best for Robbie. We also picked up some work for Robbie to do at home whilst he is off in an effort to help him keep in touch with studies.

As for Robbie in general, it is still very early days but we haven’t seen many further changes as yet, but it is as I say still very early days, on the positive side the foot which he wears his splint on still seems to be much better postured than before his surgery, however on the downside he is still having a problem with his other leg staying very stiff and he seems to be really struggling to bend this, this is giving him major difficulties when walking and even more so if he falls as he really struggles to get up again... but as I say very early days as yet so we are not too disheartened. I think he is still a bit tender where his battery pack is placed in his chest, so again this will probably still be having an impact on his ability.

As for myself I have again felt a bit of a real mix of emotions over the last few days, probably down to my own impatience, and sometimes I feel there is a change, and other times I question myself if I am kidding myself on (self doubt is a problem), I am pretty sure there have been small changes, although being with Robbie 24/7 I know I am probably expecting far too much far too soon, and may well be the last one to click on as the changes are slight.

I have included a scan of Robbie’s x-rays post op clearly showing both the implants and power unit, I still find these remarkable to look at a week after I got them, and thought they may be of interest. After the op all parents are given an A4 laminate referred to as a DBS passport, it is basically an official notification from Guys and St thomas NHS foundation trust advising has a rechargeable activa RC deep brain stimulation implant, date of surgery, and then goes on to state the lead targets in the area of brain where they are positioned. The passport also gives some advice i.e. avoid contact or close proximity to magnets, no MRI svans to be done, and surgical advice guidelines for in the event of an emergency, the back of the passport contains the contact details for the CMD team for emergency contact. 

To be honest I have copied a few of these, one sits in the glovebox of the car at all times, one in his charger bag, and one is ready to be given to the school upon his return.

Overall he is still doing really well, and is still happy as ever

Post Surgery - Days 4-7 16th Nov 2011

A few days after surgery I would say the recovery seems very swift, and Robbie seems to be handling any pain with the minimum of fuss.

One thing I would advise is that the days seem very long, as you would expect whilst sitting beside any hospital bedside, I 100% recommend you take a few things to entertain your child into the hospital. Don't get me wrong the Evelina has children's TV at every bedside, well equipped playrooms etc, however TV isn't really Robbie's thing, thank heavens we had his i-pad with him which kept him entertained for several hours over the last few days... certainly take along a few books or toys to keep your child amused.

Over the weekend we got out for a walk, on Saturday we took Robbie in his chair, along the embankment, and on to the London Eye, (Just a word to the wise, this isn't as expensive as you may think, as Robbie was in his chair he got admittance as a disabled child, and an adult goes free as a carer) It is a nice gentle ride, and the attendants could not have been more helpful when getting on and off the attraction... Really good relaxing way to pass half an hour or so. After the ride we walked a bit further then headed back to the hospital as Robbie grew tired quite quickly. Sure enough after the walk he slept for a good hour or so, and I think this first trip out really done him some good, both escaping the surrounds of the hospital, but also getting some much needed fresh air.

On the Sunday we went for a longer walk, not realising till we were in the thick of the crowd is was the armistice day parade... Gee you don't realise how busy London can be till you are truly in the middle of something like this (a pleasant site to see none the less)... Jubilee bridge was also nice with lift access to the bridge for anyone who might use a wheelchair.

Prepare for quite a lot of medicine taking whilst in the hospital, at one stage they were running out of places to put cannula's in... post op Robbie had a cannula in his right arm, left arm, ankle and groin, that said these were pretty much removed individually over the course of 3-6 days after the op. As for tablets Robbie still continues with his regular 10 tablets a day (throughout the course of the day) on top of this he was given paracetamol (pain relief), chlorophenamine (relieves itching on the wound areas) and liquid lactalose (to prevent constipation).. all of the above were administered in tablet form, which Robbie managed without too much difficulty... on top of this of course Robbie was given regular shots of antibiotics through his cannula until      day 6.

On day 6 came the bit we had all been dreading the removal of the dressings, as brave as Robbie is swallowing medication etc, he has always had a bit of an issue with the removal of plasters, bad enough having to remove a plaster from his finger, we knew taking the plasters off his head and chest was going to be a bit traumatic for him... sure enough there were several tears during this process, I don't really know of this was purely pain, or a bit of Robbie being quite chicken hearted about getting this done, Sarah was very gentle whilst doing this, and took plenty time applying water etc to ensure minimal discomfort to Robbie, basically they had to come off, and eventually this was done. Once the original plasters had been removed a temporary dressing was put on, this will come off either today or tomorrow and then the wound is left open to heal... I dare say we will have similar problems to what Sarah had when this task has to be done.

The scars were actually bigger than I had envisaged they would have been, however being well above the hairline they will be well hidden as his hair grows back in (which it is doing very rapidly - and I am somewhat jealous of this fact)

The physio Kylee also came in to see Robbie on the Monday and had a quick look at him walking around, she did quickly make us realise we were perhaps being a bit soft with Robbie, and actively encouraged us to let him do a bit more for himself (It's a natural parent thing to help your child as much as you can, but sometimes it does encourage your child to kick back and let Mum and Dad do the fetching and carrying)

Jean Pierre Lin also came to visit Robbie to see how we were all doing, and took a short video asking how we felt through the process, and what was the worst point in the process, our answer was as you would expect the taking him down to surgery and the waiting during the surgery.

Robbie also went to x-ray on the Monday to get shots done for his DBS passport, which is an information sheet advising what he has done, who to contact in an emergency, pictures of his implants etc.

We were also guided through the charging process for the power pack in Robbie's chest which charges the internal battery which in turn powers the implants... A bag of charging tools is given to you on the day of surgery, and you are advised this cannot be away from Robbie at any time. The charging process is really quite easy, and manageable... my guess is Robbie will be doing this himself, as he loves gadgets and this had taken his interest immediately (Of course this will be supervised and there is a tool to check how charged the battery is)

We were also given details of Robbie's next three follow up appointments which fall at 1 month post op, 2 months post op and 3 months post op... so this is good to know these in advance and gives us plenty time to plan for these journeys in advance.

I think the important thing I have learnt over the course of this week is the DBS is not an instant fix, and this journey is going to be ongoing for several months, possibly a year or so till we see the full benefits of the surgery, there have been small changes however this may well be a result of the medications given, or simply the honeymoon period with the operation being so recent, so it really is a wait and see process, that said I am happy in that the follow up appointments etc will involve no further pain for Robbie, he is through his sore part of the process and he came through it with amazing bravery, he really has made Dad very proud and we are positive this will help given time.

On Tuesday we were allowed home, 7 days after the op... Robbie wanted this, in fact we all wanted this, it was difficult leaving our teenage son Rhys at home during this time, it was difficult me and Chloe having to go away home at night back to our digs, it was difficult for Mum and Robbie being left in the hospital all night... In general terms we are just not used to being apart as a family, and this was hard, but hey we got there and we are all back to our normal surrounds, and creature comforts, we are back together as a family again, with the usual fights, laughs and occasional tears, but most of all we are together and safe in the family home... now this is what life is all about.

Post Surgery Day 2/3 - 11th Nov 2011

Here we are then 3 days since surgery, the healing process has been very up and down, at some moments Robbie seems to be doing really well, and at others he still seems quite poorly... I suppose this is only to be expected so soon.

The bandage on his head which has caused so much irritation has been the main focal point of his discomfort, although for obvious infection avoiding reasons this has to stay in place, this bandage has gone through many stages from a professional, snug fitting tight bandage on surgery day, to a slacker, less snug fitting headband, and eventually to a tired old bandaged which touched his head in some places and not in others... to the extent Mum decided she would try and make it a bit more comfortable for him yesterday, and Robbie himself stated... "You have made me look like Alladin" in a non too pleased way... overall we had a good laugh at his comment, and his usual dry sense of humour... One thing Robbie has retained throughout this ordeal has been his wry wit.

Eventually today after telling the consultant his bandage was really itchy, and complaining about it several times, a compromise has been reached where Robbie has now been given a "Tubex" type bandage on the firm agreement between him and the nurses that he promises not to scratch his head... Or the old bandage will have to go back on... He seems much more comfortable with this for the time being.

Today has been the first time he has complained of his "battery" being sore, he is of course referring to the rechargeable battery which has been placed on his left shoulder, under the skin, just above his upper ribs. This is quite pronounced and noticeable at this stage, but I dare say this may well be down to the swelling within the fresh wound.

Overall thought we are coping well, the Doctors are happy, the nurses are happy so all is good on that front... The painkillers seem to make Robbie's pain bearable and he complains only a little, although you can see in his face sometimes he is uncomfortable.

Couple of interesting facts we have witnessed so far, although we are still at very early days, Robbie normally wears a splint due to the fact his right foot is affected by the dystonic posturing of the calf muscle pulling his foot up towards the inside of his knee, initial indications seem to suggest (or it certainly appears to us) this does not seem anywhere near as bad as it was, and he now seems to be adopting a normal posture.

The second interesting early change we have seen is Robbie always had a problem co-ordinating both his arms together, ie when he was writing he needed a support to hold a piece of paper in place whilst he wrote with his left hand (the right hand couldn't hold the paper at the same time)... Interestingly when he was filling in a drink chart today (which the nurses keep to monitor fluid intake) - he immediately held the paper with his right hand, and wrote with his left (He did keep losing grasp of the pen, but managed to pick it up) whilst still securing the paper in position with his right hand... this is a definite change to what he was doing prior to DBS.

I think it is also pertinent to remember these changes are likely to be slow, as he has adapted ways to deal with things he couldn't do prior to DBS so it will take a while to learn new techniques and skills which he maybe couldn't manage prior to DBS.... not to mention he has only had basic programming done on the stimulators at this time and I am sure as the review visits come over the coming months there will be further elements of fine tuning to be done... Yes initially we are very happy with his progress... what a wee star !!!

Post Surgery Day 1 - 9th November

Robbie had a bit of an uncomfortable night overnight, probably not helped by the amount of wires and monitoring machines he was hooked up to, that said the morphine meant he was drifting in and out of a bit of a daze.

He did complain of pain, when the drugs were wearing down or losing their effect, even though he was on a slow release system of the drug he would often wake and complain of pain. This seems to come across as an itch when you watch Robbie, it is like he was trying to scratch his head... (This may also be down to the fact he has a large bandage covering his entire top half of his head, and in the hospital with it being so warm I dare say he would have been sweating beneath this hence you can certainly see there would be some discomfort)

It was very much a standard post op day, and as you would expect there really was nothing much happening except for the nurses coming in every hour or so to take observations of temperature, blood pressure and the likes.

Even after this surgery the i-pad was being used for short spells, Robbie playing his beloved fishing game..  We were advised Robbie was to be transferred to the Evelina the day after surgery, however due to a lack of bedspace this has been put on hold till tomorrow...

Overall I think the whole family Dad, Mum and Chloe are really feeling the strain, and tiredness is kicking in to us all.... but hey on the positive side our little lad is on the mend from the op and this makes it all worthwhile.

Certainly it is difficult to tell at this moment in time to see if the surgery has made any changes to Robbie's dystonia thus far... You do find yourself looking at his posture etc, and asking yourself is he doing anything different etc etc etc, however I have decided for the interim to solely concentrate on getting him to recover from the op, and get himself fit again before I analyse this any further. The main thing is nothing has changed, he can move all his limbs, memory is good and he can speak etc as normal... these are some of the things that really worried me post op, but all is well so far

DBS Surgery Day – 8th November 2011-11-09

After what seemed like a very long night, where every hour on the clock was seen the run up to the surgery proved to be a very worrying affair, every time I closed my eyes, I saw the surgeons knife, heard the drilling in my head... of course the thought of what lay ahead interrupted any sleep I was ever going to get with the natural worries and concerns any parent would have.

After watching the clock for many hours, I woke my Daughter Chloe at 6am, in readiness for our drive to the hospital at 6.30am, Robbie wasn’t due to go to surgery till 8.30am, however with the London traffic and all, there was no way we were going to run the risk of being late, or caught in traffic, I wanted to be there well in advance to spend a bit of time with Robbie... basically I just wanted to be with him and get a cuddle before he disappeared anywhere.

The surgeon had been round and spoke to Mum the evening before going over the risks involved as you would expect in any type of surgery, and she had decided not to stress me further and go into the fine detail of the conversation she had with the surgeon the evening before, until such time as Robbie was en route to theatre. True to their word the nurses came to the room around 8am and advised he would go down to the pre-op room at 8.30am, it had been pre-decided Mum would be going into the anaesthetic room, whilst Robbie was put to sleep, (thank goodness, I really am chicken hearted and don’t handle these things well). Surprisingly we all got to go down to the post op area so this helped to relax Robbie and also helped the family also being all together at a time like this was important for us.

The surgeon (Richard Selway) came to see us and talked us through the procedure yet again, and asked if there were any questions or concerns we had, the answer was a simple no, we had researched this procedure so much post op, I think we had all the answers we needed. The surgeon advised Dr Jean Pierre Lin would be present during the entire procedure and he would speak to us after the op was completed.

The team took Robbie away at 8.30am to be put to sleep and allow the op to start... seeing him being wheeled through the swing doors left an enormous lump in my throat, and to be honest I was struggling to hold it together... Gold star to Mum who seemed to be being much stronger than Dad in this situation (there again she maybe could just hide it a bit better than me!)

Mum returned and that was it, he had drifted off no problem, Mum even advised he had held his mask on himself to help him drop off, and there were no issues... this was the worst time, I had conflicting thoughts going on, on one side there was the relief this was it, the DBS was actually happening, and on the other hand there was the natural dread of your child having any op.

The procedure we were advised could take several hours, and the reasons were many fold, most of all though as the team need access to a MRI and PET scan equipment throughout the procedure to help plot the placement of the stimulators, these machines which are available to the neurology team at all times, but obviously in the event of an emergency coming in to hospital it may be necessary for the patient to wait till any emergencies are dealt with prior to the patient.

Around 2pm after several hours where the atmosphere is tense we were advised the Op had been completed and Robbie would be moving to the recovery area very shortly.. we hurriedly rushed down to wait on Robbie coming round.

He was in recovery albeit he was full of morphine so very vaguely aware of what was going on, however he did recognise us and gave that infamous grin, which felt really good... the Dr’s from the Evelina were with him programming the implant and taking initial readings, ensuring all was working and live... It was !!!

Sarah from the Evelina was also there, and she gave us the DBS bag we need to keep with us at all times, not really sure what this is all about as yet, but the one thing I did recognise was the charger for the battery pack which is in Robbie chest... we are to be educated on this once Robbie is transferred to the Evelina.

So in all there was a huge sense of relief at the back of operation, and regardless of how much help it gives Robbie, you cannot help but feel relieved the stimulators are now in place and I honestly believe we are through the worse of any procedures that may follow... the King’s college staff are amazing, the team from the Evelina are amazing, and as parents we have seen the support from many family and friends we thank each and every one of you for this...

DBS - The night before 7th November 2011

We set off from Scotland yesterday morning and our plan was to stop off at family in Sheffield in order to break up the journey, instead of the straight 450+ miles into London. It was a good distraction for us all, and it helped take our minds off the reason for our journey.   

                      

We set off from Sheffield at 6am this morning, much to Robbie and Chloes dismay, they have never been early risers and I think they were probably in shock for the first hour or so...

The appointment letter from Kings College Hospital clearly states you must call at 9.30am on the day, to ensure there is a bed available, and my stomach was churning from about 8am with the fear they would say there were no beds available, and the planned op would be delayed... It transpires my concern wasn't necesarry and his bed was indeed ready and waiting.

For any of you who are going to experience this op, I would say it is difficult immediately as once you have decided to go ahead with the procedure you will find yourself worrying about things that could prevent the procedure from going ahead, will your child be ill, or have a temperature, or runny nose at the time the op is scheduled for?, will the hospital not have beds available? etc etc etc... Alas it transpires we have experienced none of the above, and indeed the indications are Robbie's DBS will go ahead tomorrow morning.

Are we nervous? You better believe it!, but when you see him struggling more and more each week we need to do this. My hopes at this moment in time are first and foremost we get Robbie through the DBS without any issue and with minimal pain to him... Hopefully a quick healing time, at least then the really scary part of this trauma is over... As for the success and fine tuning of the stimulation, it really is a wait and see, time will tell situation... And I got all the time in the world for this brave little guy.

That said Mum is at the hospital with Robbie tonight, to be honest me and Chloe made a swift exit when we discovered he was getting bloods taken and a cannula fitted!!!

At the end of the day, it is very clear when it comes to the crunch there is no one quite like Mum to calm you down and you really need a hug... Thanks Jane for being a wonderful Mum to all our kids, they know they can always turn to you in a crisis and you will be there x

Less than 12hrs to go, and I cannot help but keep looking at the clock, guess it's gonna be a long 24 hours ahead...

One week today – 1st Nov 2011

Well after what seems like months and months wishing for the time to fly by, it appears my wishes have finally been answered... I sit here this morning, with mixed feelings of dread and anticipation of this time next week, when at long last Robbie will be getting his implant.

I thought I had experienced extreme stress on the run up to the eventual diagnosis of Dystonia, I then again felt I had reached a further extreme level of stress as medications were tried, and seemed to work briefly, and then began to lose their impact over time, but this last week or so my stress levels have risen to a completely new level yet again !!!

You wake up and the op is in your mind, you eat and the op is there in your mind, you go to the gym and the op is there in your mind, and again you go to bed and your thoughts are of the op yet again. It is like being on a rotating wheel, and the thought of the op is all you can focus on, it is always there, just like a scar you carry it with you at all times, there is no escaping the images your mind conjures up on what you think will be, and deep down you cannot help but believe all will be well, you just need to stay strong and get yourself through this last hurdle.

As for Robbie, we have talked further about the op and he is still just taking it in his stride, to be honest he is more concerned about “all the travelling” he will have to do... He has now decided after our drive to London last week, he dislikes travelling with a passion... If that is the worse of his concerns we are happy to stop off halfway this time we go down to give him a break...

In many ways I am glad Robbie is so young, and maybe doesn’t fully understand what the surgery involves as yet, ignorance is bliss sometimes, that said he will be sedated through the worse of the pain, so this way he can just focus on recovery, and kids do have a much quicker recovery rate as they tend not to feel so “sorry” for themselves, they are more resilient than us “adults” they tend to pick themselves up and get on with it.

No, on reflection it is certainly Mum and Dad (and Big Brother Rhys) that are stressing the most about this out of the whole family unit, but on a positive slant a couple of weeks down the line and we will be close to coming home, back to the nest as it were, with this procedure behind us (Guess I am beginning to do that wishing for time to pass thing again!)

Another strange thing is how the simple things in life suddenly become more important, the kisses, the cuddles and smiles mean the world to me now, music and lyrics are another thing I now look at and listen to a bit more intently, lately many songs keep hitting my mind and striking chords that I can relate to, probably as an example I would probably say Coldplay’s “Fix you” will now be a song that will always bring me back to this moment in my life.

We were back at the Evelina again last week, going through some of the mobility assessments again, it was really good to see the team, they truly are a skilled team, and really know their stuff. You will be really impressed if you ever get the chance to meet them.

Two weeks today – 25th October 2011-10-25

Here we are then two weeks today and we will be waiting on Robbie being taken off for his DBS implant... nervous times and the realisation of the surgery has taken its toll on all of us in one way or another throughout this time.

Pressure feels really high on the whole family unit just now, and I believe we are all a bit more reactive, and “short fused” at the moment, however on the positive side we often discuss the op with each other which helps to take the edge off the atmosphere somewhat.

Robbie and I will be heading off for London for his mobility to be reassessed, prior to the implant due to the changes in his ability of late, as mentioned previously in the blog. We leave on 26^th Oct, for his appointment on the 27^th, and then back home to Scotland after his assessment...

We have now received the “official” appointment letter from King’s College Hospital, so other than any unforeseen mitigating circumstances we now have the peace of mind, this will go ahead, this is a huge relief to us all, as the weeks had went by we envisaged further delays due to not actually having a written confirmed appointment, and having to rely that what we had been verbally advised didn’t seem to rubber stamp the op would go ahead (I think in the back of your mind, a written confirmation of the appointment cemented and expelled any doubt there would be last minute hitches, indeed it was like a reassuring “yes” this is going to happen)

Robbie was at the orthotic clinic yesterday getting his new shiny ankle splint, and all seems to be comfy and fitting well, hopefully if the op is a success this may be the last one he requires (Maybe I am being a bit too quick to state such a thought, but deep down I have a really positive feeling about this)

For those of you reading this who may be about to face a similar situation, I feel it is best to explain and talk about the effects of Dystonia from my own perspective, how I feel about Robbie’s situation from a parents perspective... you will probably run through some or all of these thoughts at some stage in this process, hence I wanted to put these down in writing and share with you all... It may help some of you out there... I hope it does...

I have been through an absolute, and frankly horrendous variety of emotional states throughout the process running up to the DBS implant, I have often felt isolated and alone, and asked the fundamental question - 

WHY ? - Why Robbie, why my boy... however over the years and months I believe I have slowly realised, it’s not really so important why this has happened, the cold hard facts are it has happened, and chances are we will probably never know why, I believe the most important thing is making sure we always try to do what is best for Robbie, do what will make his life a bit easier, I may have made some poor choices at any time but we always do what we feel is right for him at any given time.

Fear – Fear of the condition was also a major feeling that has been a major factor of stress throughout this whole situation, you will find fear waiting to pounce out at you behind every corner on this journey. You will worry and be scared on a variety of occasions... you will feel fear when you first visit a consultant, fear of their findings, fear of your child having to give blood (Robbie is petrified of needles still after so many samples being taken), fear of anaesthetics every time an MRI needs done, or PET scan etc, fear of lumbar punctures... As a parent you will say to yourself on every occasion please let it be me, let me take his pain, and take this away from my child.

Future – You naturally stress about your child’s future, I still daily think about this, how will he manage when he is older, starts secondary school, starts life after school, will he cope when we are not around anymore. It sounds silly, but this is something I am sure you will think about and go through on a regular basis.

Isolation – You will at times feel isolated, helpless and alone, and you do feel you are the only one going through these problems, in reality you are not, but you will feel that way... I would suggest (once you have a diagnosis – which can take a very long time) look for groups, charities, local support services etc, these can be a real eye opener, and help you to meet people who have been through similar situations, and this helps you to discuss your concerns, questions etc... Personally I have built a great support network through the above services and often it is good to talk to someone who has already travelled down the path you are currently on... I have many friends to thank for this, and often I will speak to them and ask questions on any area I feel I need to take some advice on... basically there are people out there who can help you get over your feelings of isolation, and social network sites and carer centres are a great place to find these people. I have mentioned one particular source below where you will meet a great group of people who have (and still do) help me immensely... There is a facebook group - The Evelina Childrens Hospital Dystonia Support Group this group has been a major help and source of comfort to me throughout this whole ordeal. Obviously if social networking isn't your thing, the Dystonia Society have an advice line which is available on their website... try these things they may well help

Again, this is only the tip of the iceberg on some of the feelings you will have along the way, and this part of the blog may come across as being somewhat dark and sombre, this was not my intention but I wanted to share some of the key thoughts you will at various stages experience, overall you are not alone, there is help out there, and people who understand your frame of mind at any given time. My e-mail address is available on this blog page if you want to talk about anything feel free to get in touch, add me on Facebook, or feel free to leave a comment and I will respond.... Just remember you are not alone in this, help is there, sometimes you just got to reach out and say “I am struggling... help!”

DBS - 3 Weeks Today 18th Oct

As the time to Robbie's DBS surgery moves ever closer I thought it would be pertinent to discuss our thoughts, feelings and plans...

Thoughts - Again a very mixed bag of emotions are felt daily by the whole family, the DBS now sits very firmly in our minds and never seems to go away, even through moments of distraction the fears and emotions are lurking just below the surface. Even Robbie is talking about the surgery, he is inquisitive, and wants to know when it is, and we often look at the calendar and count down the days... 

I had a very interesting, if somewhat difficult conversation with Robbie the other morning, there we were sitting together in the kitchen having my morning coffee and just chatting day to day chat, we were alone as the rest of the house were either still sleeping, or in the process of waking up, hence it was nice quiet one to one time with Robbie and I, and eventually he got round to talking about the op, again asking about how long it was till the day, and he said to me "I will get the op and I wont have Dystonia anymore eh?, because I don't like having it" It was very tempting as his Dad to say, yes, although I knew this was not the case, and deep inside I knew I could not give him this false hope, so I went on to explain, "No Son you will still have Dystonia, but it will not be as bad, and hopefully you will be able to move about a lot easier, and maybe write a little bit better... if you are really lucky you might be able to stop taking your tablets everyday, and maybe even get rid of your splint"... His reaction was fine, and he seemed happy enough with this, and simply changed the subject, obviously I couldn't let it go so easy, and inner feelings of this conversation have been repeated in my mind daily ever since. I admire how young kids, can just stand up, brush themselves down and move on from a conversation such as this...

Feelings - For some of you reading this who have experienced a child who suffers from Dystonia, you will probably understand what I mean, and somewhat to a lesser extent I am sure those who haven't witnessed such a trauma will probably be able to "put yourselves or thoughts into that persons shoes" I think my main feelings are towards the future, how will Robbie cope with this as he gets older, it is fine just now I can lift Robbie into the car, lift him in the bath, help him with his toileting needs etc, but the question you constantly ask yourself is what happens ten years from now, does a teenager or young adult want help to do these everyday things we take for granted, and the answer I always come to, is probably not. 

It may seem as though I am being a bit pessimistic and assuming the op will not help, but I am a firm believer if you always manage your expectations and don't set your sights too high, then you are likely not to feel so dissapointed if things do not go so well.... 

That said I still have this other vision of a fairy tale ending to all of this, where it all goes really well and Robbie does most things by himself... 

I believe the above pretty much sums up the mixed feelings I have as we move towards DBS... Only time will give us all the answers, and as stated many times previously, regardless of the outcome we will always be there, right by his side.

Plans - Immediate future we have quite a busy schedule ahead, with a new splint being fitted on Mon 24th (He has rapidly outgrew his original one). Off back down to the London (Evelina) on the 26th, for an overnight stay, and he has an appointment on the 27th, to get his mobility reassessed prior to the op...  then home, and back down again on the 7th for admission for his op on the 8th.

The next few weeks are going to be traumatic to say the least, however I still am looking forward to it, at least we will know the procedure has been done, and we will assess the results in due course... there will be closure on this stressful period in all our lives.

Other than the above, we have made advances in relation to Robbie now accepting he needs to get his hair cut really short for the operation, he initially flatly refused to have this done and we envisaged this was going to have to be done by the surgeon on the day, however with a bit of persuasion from Mum (after her getting him a huge collection of Beanie hats for after the op) he seems to have accepted it more, further to this a family friend who is a hairdresser has agreed to give him a short cut at the end of this week (to get him accustomed to the style) and then a further really short cut before we head off down for the op in Nov... 

We are also on the final week of the October holidays and the weather hasn't been great at all, so we have been a bit housebound and Robbie is really looking forward to getting back to school next week, getting back to playing with his friends... We have discovered a new skill though, making chocolate crispies !!!! Robbie and his sister Chloe regularly do this with Gran Ovenstone, however we had a crack at this at home last week with outstanding results, so good we made them twice... Not quite at the making scones or pancakes stage yet, but we will get there!

The cooking/creating cakes thing seems to be something Robbie really enjoys, who knows perhaps we have a budding Gordon Ramsay in the making here!!!