Hospital 5 Day Assessments - Day 1 - 25th July

After a good rest at Gassiot House, Robbie is ready to start off on day 1 of 5 days of assessments, day 1 we need to attend King’s College Hospital, currently about 3.5 miles away from where we currently are based at the Evelina Childens Hospital. Instead of facing the London traffic on a Monday morning, we felt it best to take a cab to this hospital, our first appointment was 1pm, for a Upper and lower limb SSEP, which in layman terms like mine basically meant their were electronic pads attached to various areas on his arms, legs, head and feet, and small electrical pulses are passed through the muscles in his body, I believe this is to establish how the muscles are sending signals.

This test took approximately one and a half hours by the time the sensors had been placed, tests followed and results recorded. One of the main issues during this procedure was the medic conducting the tests did mention he kept moving his arms, as anyone with Dystonia or who has experienced Dystonia may be aware it is very difficult to control movement, as these can be involuntary, however the test was eventually completed. This seemed to drain Robbie a bit, and he was visibly tired during the procedure, however remained patient and eventually the tests were completed.

Other than this limb measurements and sizes were taken.

The second part of the investigation was a procedure called Magstm, this involved wearing a cap like contraption, with electrodes, a mild charge is then put through the body and tests if the central nervous system is okay, this can establish if an implant can be made without causing problems, this took about a further 30 mins or so.

So 3 hours in and we were all done, Mum had sat with Robbie through all these procedures, then it was a trek across London back to the Evelina, Robbie was to stay in the Evelina tonight and has speech assesments in the morning and a PET scan scheduled for the afternoon tomorrow, again Mum is staying in with Robbie this evening whilst I took Rhys and Chloe back to Gassiot House for the evening.

Early night as we will all be over to see Robbbie for 8am tomorrow, my guess is he will fall asleep early tonight as he did look tired after his tests today, not sure if he found these physically draining, or merely down to the time they took to complete, I tend to think the latter.

Tiredness aside, Robbie actually loved the remote controlled bed in the Evelina as the picture above shows, I guess this may well keep him entertained for several hours over the next few days.