Another busy day ahead, and to kick off proceedings on the final day we were to meet with Tamsin the Paediatric Clinical Psychologist.
Her task was to take Robbie through a series of assessments looking at psychological aspects of Robbies cognitive development, this included a series of tests looking at memory, mental planning, which included things like memory games, reading and describing pictures, knowing the similarities between things (like milk and water for example) matching pictures, puzzle/task solving, identifying missing parts from pictures, facial recognition etc etc etc. However once again in the unique style of all Robbie’s assessments this week they were done in the manner of a fun thing for the child to do, and again Robbie seemed to enjoy doing these assessments, as always breaks etc were taken as and when Robbie required them.
Then it was back to doing the 6 minute walk test as was done a few days earlier this time without the aid of Robbie’s orthotic splint.
Next up Kylee and Lesley both did a few finishing off tests which hadn’t quite been completed on the previous couple of days, again this demonstrates the team at no time pushed Robbie too hard and the childs comfort was foremost in the whole teams mind.
In the afternoon we were to meet up with the surgeon who would be performing the procedure, Mr Richard Selway (Consultant Functional Neurosurgeon) when we met I knew I had seen the face before and it turned out I had indeed seen the surgeon in a conference regarding DBS which the Dystonia society had gave us, in which he had been one of the speakers. He is a very approachable person, as are all the team at the Evelina, and no questions we had were unanswered and we were very comfortable to ask what we liked in front of this team, overall the team that are going to do Robbie’s DBS have all really gave us confidence in the procedure, and both Jane and I are very keen for this to happen as soon as possible.
One of the really postive things about the week was all of the professionals we had dealt with gave feedback on the initial findings of their assessments at the time, so it wasn’t the case Robbie was tested and we got no feedback, the team shared their findings almost immediately, which was a real change from standard medical practices I have dealt with elsewhere, albeit some of the news (which rather surprisingly we hadn’t realised or aware of) certainly hit home, never the less it was really good to be made to feel so involved, and the feedback was given in very easy to understand terms without the use of medical jargon thus we could fully comprehend their finings.
Personally I believe the thing I have learnt most from the week is the effect Dystonia has on other functions of the body, and how it can help to hinder the planning process in the brain for everyday tasks most people take for granted, the fact that Robbie struggles to co-ordinate both his right and left hands together, and the process behind why Robbie finds it so difficult to stand still with feet together. The reasons why he sometimes struggles to get words out, and possibly the reasons why he struggles to understand what is being asked of him, leading to frustration on all sides, and it has taught us Dystonia is not a stand alone condition and many “other” problem areas can be caused by the condition.
We look forward to getting the implant done, with a view to therapists, teachers and ourselves then working with Robbie and addressing any further help he may requires to get his use of language, understanding and motor skills back to a reasonable level… one day at a time…
On reflection of the week that was, my personal highlight was not only having the privilege of meeting and working with this team of absolutely dedicated professionals, but also meeting the young lady who had already had DBS, she was truly inspirational to us, what an amazing story she had to tell and I believe this was because we could so closely relate this to Robbie, albeit her dystonia was more severe than Robbie by the time she had her op, and hopefully a few weeks, months and even years down the line I would like to think that we as parents could help others, or better still Robbie will be able to tell his story and help others.
Finally we headed away from the Evelina, however are looking forward to the day we travel back for the surgery, whilst daunting and a bit stressful, I am now fully confident we are making the right choice for Robbie in going ahead with the implant, whilst his condition will never be cured, it will certainly be much more manageable, and his quality of life will improve.
In fairness as we expected it was an absolute rollercoaster of emotions ranging from really ecstatic to slightly devastated at times, however I suppose this is what “life” really is, and you got to get through some real lows, to really be able to embrace the highs, first and foremost though we have left the Evelina even more optimistic than when we arrived.
I really cannot recommend this team enough to you, if you need the help with any complex motor disorders, I am sure I have been fortunate enough to be seen by probably the best team of medical therapists and professionals in the world in their chosen field, Evelina and it’s staff I thank you from the bottom of my heart.
Back to Sheffield tonight to stay at Les and Sonia’s (thanks guys for letting us use this as a half way house) then home to sunny Scotland in the morning, Robbie has requested his favourite dinner this evening, so off to the Chinese for us, then back to my wonderful couch (Oh I so missed this)
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