My boy, the summer before he took ill.
It's 4.20am here in Toronto and I'm lying in bed wide awake. My eyes are stinging with tiredness but I can't seem to get them to stay shut, I long to just drift off I can't get my mind to switch off. I'm listening to my boy crying, distressed in his sleep, as he is every night. And I worry what's tormenting him in his sedative slumber.
There has been a noticeable dip in him this week. We are very concerned that with a planned part time re-start to school looming he will start to spiral if it's as hard for him as last year. He's currently in no state to cope with school!!
So, we are going to ask our neurologist back home if she will approach the UK immunology centre in Oxford and try to get another round of plasma exchange approved as soon as possible. It gave us good results at Easter and we feel it's worth a shot to stabilise him in prep for an attempt at school.
High on the priority when we get home are sone private consultations. With an ENT doc to arrange urgent removal of tonsils before winter sets in. And also with a rheumatologist, for his debilitating joint pain, other possibilities have been ruled out from the testing, it's common for children with auto immune conditions to have rheumatic problems, especially with PANDAS. And in light of Cameron's vicious motor contortions at the start it wouldn't surprise me - I used to watch him writhing in excruciating pain, watching the vicious monster in his brain turning & forcing his limbs in directions they weren't meant to go in (!!!) and wonder if it was doing any damage to his joints.
The music therapy clinic here in Toronto have advised us that they certainly feel they could be of help to Cameron but that it would be when he's back at baseline, with strep levels under control and coming out the other end of treatment. I admit, we took the decision to fly on up to Toronto at our own expense hoping against hope that they could have been of some help to him now before he tried school again, but at least we tried.
I'm feeling very overwhelmed at the minute, we are still homeless, we will be going home next week to temporary accommodation as the repairs on our house could take some time. This is unsettling for the children, it's going to mean battles with the insurance company and stress dealing with builders & repair guys! There is still a lot to plan for Cameron's school re-start, Annie starts a big year in school and we are under a lot of pressure to get Jonathan's dad's house cleared & finalised.....
I'm lying looking at this photo recalling my boy back then, how handsome, smart, confident and outgoing he was.........memories, comforting but painful. 💙💙💙💙💙