It was our final meeting with our Paediatric Neurology consultant yesterday at our local hospital as we are being referred onto Adult neurology – she made the referral back in January but nobody has picked us up as yet. So it was not so much a handover meeting as a farewell meeting, as she has taken care of Joshua for at least 6 years.So I collected Joshua from school at 10.30, he was not ready, he was sitting nonchalantly eating toast as if he had all the time in the world. But as soon as he saw me, he abandoned his toast and jumped up to give me a hug then rushed to the door.
He waved and grinned all the way to the hospital, excited to be getting out of school early, and we managed to park right outside the Women & Children’s Hospital. We walked arm in arm to outpatients and checked in at the desk. He was pretty restless in the waiting room but did not attempt to leave his chair, he kept stealing my mobile phone, playing with it then would put it gently on the floor so that it was in danger of being trodden on. We were rescued when he was called to be weighed and measured, 58 kilograms and 5’8″ and I was busy putting his shoes back on when our consultant came to find us so we went straight to her consulting room.
It was immediately clear that Joshua was not going to sit quietly in the chairs allocated for patients and he edged towards her desk, so as she knows him so well, she allowed him to sit in her seat so that he could play with her telephone and the locked keyboard of her computer, and he stayed on them, occasionally picking up her pen to make some important notes, while she and I were able to talk. She asked me how things were for him and I reported mainly positive news:
- Joshua has not had a seizure , or emergency medication, for over 3 weeks now, I almost whispered
- He is sleeping better than he has done for most of his life – typically sleeping from 9 pm to 7 am, with no daytime sleeping. She had helped us with both melatonin and sodium chlorate to try to help him to sleep in the past
- Joshua’s eating is more hit than miss at present and chips are his favourite food. he had gained weight since his last visit; she had referred us to a dietician in the past when he began to lose weight.
- We have successfully found Adult respite provision to take over from his Children’s provision and already he has had some successful daytime visits. Our allocation for respite has been increased above and beyond one weekend in four, which she liked as she pointed out that we were not getting any younger as carers
- We have both school and social worker support to help us to identify and secure the best daycare possible for Joshua , once he leaves school next July.
The only negative was something that she could see in front of her, that did not need to be said ,as he pulled at my clothing and my face constantly throughout our meeting, while smiling at her. Joshua, while he is so much more lively and alert, he is much harder to manage than he ever was before when he was sleepy and passive.
I gave her a thank you card and some ginger cake, and became rather emotional at the thought that we would never see her again. As we were leaving, she paid me two compliments:
” You are doing a beautiful job of taking care of your boy… but please also take care of yourself”
and then as we walked away arm in arm:
” You do realise how much he adores you don’t you?” and I agreed with her, saying that I knew it and I was very lucky.