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.
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