July 2016 – GOSH clinic

Me, Matt and William go in on the train for our ‘day out’.

Vitals first -he’s grown 6cm, lost weight and all looking good.

Physio – all the same tests, he took part quite well and cooperated as much as any 3.5 year old. All looks the same as 6 months ago so we’re as happy as can be.

Luckily Dr S was available for an earlier meeting so off William went with a play worker during our meeting. Over an hour later with the Dr and Clinical nurse we chatted about lots including steroids. Much to read and much to think about.

Off we go from GOSH for an Italian and a trip to the science museum then home on the train.  Not your usual day out, but what is usual now hey?

GOSH again… Mid August 2016

Something really helpful that GOSH offer – therapy for you and your family. It helps to talk to those that know what you are going through.

This time with my family to discuss the language we use with children and each other and how we explain to them about William’s condition. I think they all found it useful to come along – most of them were there and contributed in their own way.

What we decide is that we don’t use ‘poorly’ or ‘ill’ or ‘sick’ in our language with anyone about the condition. We also will not lie – but be sensitive in what we say.

I’m to ask him when we next have an appointment – ‘why are we going to Physio William?’ We shall see…..

Physiotherapy appointment August 2016 – Just at QE2 today so I ask William  ‘Why do we go to Physio?’ Response – ‘I play with toys there, is Phoebe coming?’

So that went down well – but you never know I may have planted a seed!!


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