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December 10, 2012 / angelavbolton

December 2012: Robert’s progress

Angela and Bob in Paris (2006 or 2007)

Angela and Bob in Paris (2006 or 2007)

The last week – since Robert has been on the second new medication (which started on the 30th November) – has been strangely sad and good at the same time. Robert has shown tiny new/different behaviours, increased wakefulness and – over the last couple of days – has been making sounds in his throat as if he’s trying to find his voice.

Of course we don’t know if this is the case but hope so.

I’ve asked the Speech & Language Therapists to consider trying the speaking valve again and to allow us to try Robert with tastes as we used to do in St James’s.

Robert has also made some new movements and is showing better control of neck and shoulder muscles. If you’re familiar with this blog you’ll know I’m careful of interpreting any new things he might do so if I write down that it’s new, then you can believe it’s new. However, I don’t know if it is or will be considered ‘consistent’ and that’s the term we’re always up against.

I’m being trained further in his care by the staff at the National Rehabilitation Hospital. Our friends in St James’s taught me a lot while Robert was there and now the NRH are taking it a stage further for us. This week I hope to be at his physio sessions again as it’s so important that he get that work done and that I know how to do it. The more I learn the better for him.

It’s a heartbreaking situation, of course. Seeing two of his grandchildren with him today – Luke comforting him (he looked a little upset a few times) and Lia worried about hurting him – just pierced my heart. Normally Lia would fling her arms around him but now she’s afraid she’ll upset or hurt him. Luke was so grown-up: ‘you’re fine, Grandad, you’re doing great’, and patting him on the shoulder. There were four of us there, Ayesha, Luke, Lia and myself, and I truly believe he could feel the affection and warmth. He needs all that and more ~ just think about it: what would you respond to? Nothing… or people you love talking to you?

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