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)