Wow what a hectic day today was, probably the most intense thus far for both Robbie and ourselves…
At the outset of the day we spent time with Hortensia and Wioleta, they put Robbie through a variety of individual tests looking at stability, balance, writing, colouring, many of the tasks were quite difficult and Robbie struggled with a few, what became very apparent very quickly is the fact his dystonic movements caused him more and more issues the more complex the task given. It was eye opening that the team seemed to know exactly what types of things Robbie had difficulties with, I suppose this is one of the reasons they are experts in their chosen fields.
After a couple of hours there was a further session of speech assessments with Lesley Baker the speech therapist, this wasn’t to be his last assessment with Lesley and a further session took place late afternoon whilst a goal setting session would be held with Jane and I. Lesley’s lunchtime session involved a flipbook with various pictures, and Robbie was asked to describe what was happening in the pictures, the main focus of this session seemed to be geared towards words and word structure.
Next Hortensia and Wioleta wanted to see and film Robbie having his lunch, Hortensia wanted to see Robbie eating using a knife and fork, to be fair this is not something Robbie usually does as he prefers to use a spoon or finger foods. Part of this discussion touched on Robbie being a fussy eater, and how it had crossed my mind on several occasions part of the reason for this may well be down to him liking foods that were easy to eat and swallow, along with easy to eat with fingers ?
There was then a short half hour break for lunch…
In the early afternoon Hortensia wanted to look at the dressing and self care side of Robbie’s dystonia and we had been asked to take a change of clothes for him to attempt dressing and undressing himself, here it got quite difficult as naturally as a parent you immediately go to help your child when they struggle, however Hortensia had given us clear warning not to help as she need to see how Robbie problem solved, after putting a change of clothes in a drawer (to give a realistic feel as possible to the exercise) she asked him to take his clothes off and get changed. Robbie just looked and I prompted him “take your shoes off first” then Hortensia simply stated “No Help”… at this Robbie became quite timid, and we asked if it would be better if we left the room and off we toddled - Once we were away he managed to do the change to the best of his ability, then he was given the chance to pour cereals and milk by himself, again we were not in the room when this happened but it went okay.
Then off Robbie went to meet up with Kylee Tustin (Clinical specialist paediatric physiotherapist) again he was with her for an hour or two and this assessment covered amongst other things, sitting, sit-ups and press ups . Kylee went on to explain she used a scoring system similar to what is used with kids with cerebral palsy, as again this gave a benchmark to compare Robbie at 3, 6, 9, and 12 months post op, this would also be used for ongoing assessments over years.
Whilst Robbie was going through his paces with Kylee, we got to meet Dr Margaret Kaminski (Clinical Fellow in Motor Complex Disorders), she ran us through the full procedure for the DBS surgery, again we saw examples of the implants, battery systems, charger systems, along with a complete run down of the procedure, what would happen, how long it would take, what to expect, post op care and follow ups.
We were then spoken to by both Hortensia and Kylee, in relation to goal setting, we all discussed there findings from the assessments and discussed the areas Robbie has difficulty with, we decided on 7 or 8 key areas we saw as everyday issues, and discussed and recorded these in detail. Then my wife and I were asked to score how on a scale of 1 - 10 on how much each problem area we had discussed affected Robbie and ourselves…
I will refer back to these goals later in the blog sometime.
I think the grey cloud of the day would be when we were asked about when we expected the surgery to happen we were advised 23rd August in our June visit, however they did have to break the news that it would not be this date it will happen, an exact date hasn’t been confirmed as yet, so hopefully we will try and get an answer from the surgeon on this tomorrow, this said we fully understand as the op is done at King’s College Hospital with after care at the Evelina this is quite an exhaustive admin task to ensure all departments can accommodate the procedure at the same time it isn’t the end of the world… So it could still be late August, or as late as mid November, regardless we are both confident this is the way to go…
Eventually we left the hospital about 5.30pm, then walked for miles to try and absorb all the information and excitement of the day…
It was a really, really busy day… we walked to Buckingham Palace to show Robbie where the Queen lives, and then went off for a McDonalds, now home… thank goodness !!!
Almost over! It is a tiring week - but well worth it. All the team members you mention will become very familiar faces - they're a really great bunch of dedicated professionals. The NHS at its best.
ReplyDeleteHi Dougie
ReplyDeleteGlad the assessment went well - you must feel as if you all went through the mill a bit. It's worth it though as the team will have so much useful data to compare pre and post-DBS. Sorry to hear that they can't give you a date yet but fingers crossed you'll hear soon. One of these days we will meet up when you're in London! Best wishes to you all. Penny (Ritchie Calder)
ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DONE FOR MY DAUGHTER?
ReplyDeleteMy daughter suffered from dystonia for more than 7 years which we started experiencing in her when she turned 4 year and 5 months we all thought it will end but got even worse as days went by. We tried all several treatments and therapy prescribed by various doctors we met but to no avail, she lost total concentration and always complain of neck discomfort. She usually tells me she haves jerky head movements. This were steady disorder that disrupted her entire life, even at night she slept less because of this.It was during a casual conversation with a friend that i learned about Dr Williams herbal medicine I was able to contact him on his email address. and give him all the necessary information that he needed,few day later he sent me the herbal portion and his medicine was able to restore her back to normal and she is very okay now without any side effects whatsoever. If you have dystonia, do not hesitate to contact him on drwilliams098675@gmail.com for advice and for his product. I hope this also helps someone out there.