There has been quite a substantial decrease in Robbie's mobility over the last several weeks, and this is taking it's toll on Robbie first and foremost, however the family is also struggling a bit to cope with this change.
Again his poor mobility in his legs seem to be the biggest and most obvious change, the school have now become quite heavily involved as they feel Robbie not using his chair isn't really much of an option anymore... I totally agree and understand where they are coming from, obviously the classroom environment is full of potential accidents waiting to happen with the array of desks and chairs throughout the classroom for someone not very capable on their feet, thus they have asked if we are okay with him using the wheelchair at all times within the school, unless a support teacher is on hand to assist and support Robbie.
Even using the toilet, or washing hands etc at school there is a need for assistance at all times, which Robbie has openly discussed he is not happy about, however for his own safety he needs this support, so he has been told he needs to do this, at least for the time being...
The school have also asked if Robbie can finish at 2.30pm daily as he becomes very tired later in the afternoon, which we have agreed to for the short term, the school have advised the period between 2.30pm - 3pm is basically "clearing away" time, so I dare say his education will not be affected by this change.
The occupational therapist has also been at the school to assess Robbie, and she too has backed up the schools suggestions, and also insisted when using the toilets at school Robbie needs to now use the disabled toilets (again this toilet has hand rails etc so is much more stumble friendly with an array of hand rails etc to hold on to in the event of a stumble)
Again the growth spurt continues with Robbie, it really is unbelievable how much he has shot up over the summer, and a trip to the appliance clinic was required yesterday as he has outgrown his splint for his ankle... new one due to be ready 3 or 4 weeks down the line.
Robbie has been very vocal about his dystonia of late, and will often have deep and meaningful conversations with Mum and Dad about how he feels about it, as always we just try and listen, and answer as truthfully as we can any questions he has...
One interesting conversation we had which I would like to touch on, was where a friend from Australia (whom i have been contacted from via the blog) had sent an e-mail advising their daughter has dystonia, she is 5 years old and I sat and spoke to Robbie about this little girl with the same problem as him, and one of the chats that came out of the conversation, was the fact Robbie was genuinely surprised when I said someone else has dystonia, it obviously seemed to him he is isolated and alone with this condition, and to explain this wasn't the case, and there were other children with the same issues seemed to make him brighten up a bit and feel a bit better, in many ways I am glad he is now openly talking about how he feels and giving himself a chance to let those frustrated feelings out. (Many thanks to Julian and Marsela for the contact, I really do believe this has been a breakthrough in helping Robbie to talk about his dystonia)
Other than that it is pretty much business as usual at home, we still give Robbie free scope to run (and fall) at will at home, he still needs to burn off all his energy !!! That said we have made the house as fall safe as possible, with all sharp edges removed where possible, or at least hopefully out of harms way...
The only other news is I have e-mailed the complex motor disorders team at the Evelina, to enquire if they would like to re-run their mobility benchmark tests again, as these were done in July, there has been quite a drastic change in his mobility since this time, I have advised I am happy to take him down before the Op if they want to re-assess his mobility post DBS... now awaiting response...
7 weeks today to the op... be counting the days soon !!!
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