Been rather an eventful week overall, it transpires that Robbie’s Xmas play at school was to be premiered on Thu 8th and Fri 9th December, unfortunately Robbie’s first review at the Evelina was also planned for Fri 9th at 10am, hence we had to leave for London on the lunchtime of the 8th... 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 25th 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 :)
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