11 Weeks Today 24th Jan 2012

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

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

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

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

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

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

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

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

10 Weeks Today – 17th Jan 2012

A review trip to the Evelina was our main focus this week, we set off on the Thursday morning on our 450 mile trip to see the complex motor disorders team, the trip was calm and relatively straight forward, again we went a different route, one which pleasantly I would use again as it knocked nearly an hour off our usual journey time. (One good thing to come out of these trips if nothing else I have picked up great knowledge of B roads between Scotland and England)

Our overnight stay was to be Gassiot House yet again, and for all the building work and changes going on in and around the building there is no change to the accommodation quarters as yet, those of you familiar with this will know the script, i.e. kitchens lacking cutlery, crockery etc, a lounge with a TV that cannot pick up any reception etc etc etc... again though the accommodation is fit for purpose (albeit you are probably best to take a laptop to watch a movie on, and your own cutlery is always the safest option.)

In the morning we were to meet with Sarah Perides and Dr Jean Pierre Linn, and as planned the appointment went to schedule and commenced at 10am. We discussed a variety of subjects regarding Robbie and the excellent progress he is making, and it was decided due to this ongoing improvement there would be no change to the stimulator settings. Also discussed were a couple of things my wife and I had discussed prior to the visit, namely the orthotic splint he currently wears on his right foot, and also to pose the question was use of a helmet to wear whilst in school necessary.

First off we discussed the splint, the splint had been given to Robbie not long after the dystonia spread to his right foot, when his foot seemed to be twisting inwards and upwards (if that makes sense), this seemed to have corrected itself the day after DBS, and as the weeks passed seemed to have gotten straighter, so the question was asked “Do you guys really think he needs to continue wearing this” Dr Linn got Robbie to take his shoes and socks off and took him off down the corridor for a walk, and several minutes later returned to advise, he would like to see Robbie build some strength in his right calf muscle and it would be okay to lose the splint, this was a great feeling as whilst wearing the splint there were a couple of issues, Robbie, we noticed more and more, was becoming very conscious of the splint and was forever pulling his trouser leg down to make sure it was covered, and secondly you probably don’t appreciate what a financial burden it is to have to buy two pairs of shoes every time your child needs a new pair (as when wearing the splint the shoe sizes tend to different as was the case with Robbie), also, apart from the financial aspect you are very limited to the type of shoes you can buy due to the width of the foot with an orthotic splint.... Mum, Robbie and I were very glad to put the splint in the back of the wardrobe (hopefully there to stay) and trot off to the shoe shop on our return.

The next item for discussion was that since Robbie has found his new mobility he no longer is confined to his wheelchair within the school, the only exception to this rule was playtimes, when for his own safety it had been decided it was best to stick with the chair, as time has passed and he has grown stronger and more stable we decided the time was right to let him out to play at breaks, we were unsure whether this would be better with some kind of head protection in place, the team advised there was no need for protective headgear, and now Robbie has the freedom of the playground at breaks, It was quite funny to watch him when he returned to school after lunch on Monday, having the freedom of the playground, but a little unsure of what to do, sure that will change soon enough... One thing is for sure, you can see by his beaming smile he is loving this new found freedom.

Another area which was discussed at the visit was his medication, Robbie still has a habit of itching his scars, they seem to be still giving a bit of irritation, either that or it could be due to the fact he hadn’t had his hair washed since the op... either way Dr Linn has prescribed piriton to try and address this issue (not a large dose just half a tablet three times a day) On the positive side Robbie is currently still taking Sinemet, Trihexyphenydl and gabapentin tablets, Dr Linn has started a medication reduction programme for his sinemet, reducing the doseage by one tablet a day for the first week, then removing two tablets a day for the second week, until week three when he will be Sinemet free !!! We are closely monitoring Robbie to ensure this reduction in medication has no effect and we have been advised to contact the team in the event of any changes... so fingers crossed all goes well.

Finally we got the all clear for Robbie to be allowed to get his scars wet at long last, after the 8.5hr drive home we had a clear set agenda, first up a nice Chinese meal for our tea, then a big hot bubble bath, which Robbie soaked in for ages, lying back enjoying getting wet again... a treat which cheered the wee man right up, and he slept like a log our first night back, hair washed (and gel applied), well soaked and a full belly making the ideal end to a good review visit.

Robbie attended his first proper swimming lesson last night, and had an absolute ball, he managed extremely well, and we will certainly be back next week and on an ongoing basis... seeing small things like this make the dream a reality... Also at time of writing I have just dropped him off at school, I arrived in the playground and lifted him out the car and asked him what he was going to do till the bell rang, “I am going running” he announced in an excited voice, and sure enough as soon as I put him down he took to his heels and ran, visibly excited, even better still when he got to a group of his friends who were playing football, he just joined in kicking at the ball like he had done this all his life, this was amazing to see, and certainly something I never envisaged he would ever be able to do, but Robbie never failed to amaze me yet again... It would be true to say I drove out of the school gates beaming with pride in this little fella, with a tight lump in my throat, and a tear in my eye... DBS has made all this possible, and is something I would recommend to any child suffering from this condition.

9 Weeks today – 10th Jan 2012

Again another good week, with very few problems to talk of, in fact there have only been a couple of incidents this week on the negative side.

Similar to last week, we had an episode one evening where Robbie clearly experienced a slight relapse in that his twitching started again, and he again experienced problems with his speech (It seems as though his tongue is twisting causing him to have difficulty when he tries to speak) this episode came off the back of a really mild and unseasonably warm day, where his friend, a neighbour from over the road had come over and played with him in the garden for most of the day, the positive side of this is it is now very clear it is when he gets over-tired this seems to happen, as the same incident he experienced the previous week, was after a similar day where he had played hard most of the day, and he had exactly the same effects, after a good night’s sleep on both occasions all was normal again, hence we are not too worried by these episodes as it seems to be his body’s way of saying “I need rest”... I am sure as he grows stronger and fitter this will improve, however we will closely watch this.

The next episode we experienced which we haven’t seen for a long time was last night, when Robbie woke from sleep complaining of pain in his foot, when asked where exactly, he pointed to his right knee ??? So again one to watch, that said we are back at the Evelina on Friday morning so we will mention it to the complex motor disorder team... A dose of calpol seemed to be enough to calm any pain he may have been feeling and he dropped off to sleep after an hour or so.

On the positive side, when he woke this morning all seems to be well again, so again this may just be a tiredness thing, he is off back to school today after the Christmas and new year holidays, and he is really happy about this, he loves the school and is simply craving the company of his friends and teachers again... long may it last...

Charging is getting to be a bit of  chore for Robbie now, and instead of him now telling us he needs to be charged, we seem to be having to tell him on a regular basis he needs to charge his battery, (I think the novelty of charging has worn off a bit, however he has been told, if you don’t do it daily we will tell Sarah (from the CMD team who we see monthly) and she will give him a row, this seems to have the desired effect, but it just goes to show how complacent he has become with his new found freedom and improved mobility.

As stated previously we are back down to the Evelina hospital in London for his 2nd monthly review on Friday 13^th, which means we leave for London on the 12^th, with a stay at Gassiot House on the Thursday evening, Robbie’s appointment is at 10am Friday, and then it’s the long drive back to Scotland... My thoughts are firmly on what will happen at the visit, the question is will they adjust the settings (personally in my opinion the current settings seem to be working extremely well) however happy to leave this decision to the team who obviously have much more experience in this area than I ever will... I am just of the mind if it is all working well, don’t mess... but as I say this team have much more experience than me.

Overall improvement is ongoing and progress is very apparent, we are loving watching this little lad do new things, things he has never managed previous to his DBS, he is much more mobile, confident and outgoing... this journey has been absolutely miraculous to watch, and it is a joy to behold, currently we feel like the luckiest people alive.

8 Weeks Today – 03 Jan 2012

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

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

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

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

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

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

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

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

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

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 :)