What a week!

What a week!
I think we have gone from desperate fear, to confusion, to doubt, to searching, to validation and we are finally in a place where we need to make some important decisions – and I’ve run out of steam!!
When I first noticed Malakai’s strange movements/seizures last week Tuesday, a cold chill ran down my spine, I saw something that scared me and it never occurred to me even once that the doctor (that person who knew ‘best’) would stand in defiance of what we knew we saw. I just had this idea that we could sort it out immediately. I naively expected a solution that night or the next day at the most.
I came to realise (after a very long weekend) that the solution may not appear right away. I realised that it would take a bit of a fight to get my instinct validated by someone who ‘mattered’.
On Tuesday I took Malakai to his PT for her opinion. She believed that he was intentionally doing this to get a ‘sensory kick’. For those of you who might not understand – imagine the good feeling you get when you stretch in the mornings – well, it’s something like that. I left our session not quite understanding this theory, because I could see that this movement was not voluntary for Malakai – he did not intend to do these movements, so why would he be doing them for a ‘sensory kick’?
On Wednesday I took Malakai to his OT for her opinion. As soon as I lay him on the mat, he had an episode and I saw the worry in my OT’s eyes. She immediately saw what I was seeing and it concerned her that now Malakai was having these episodes for up to 5 seconds (from half a second at the start of this). She agreed with me that Malakai looked ‘taken over’ by the movement, something he didn’t seem able to control, something that indicated seizure activity.
Yippee? Woo Hoo?
I am relieved but at the same time not. At least I know I am not losing my mind, but this means that something is the matter for sure.
I took to this thing running, slowed down to a bit of a brisk walk and now I am at a dead halt!
I need to decide whether I take my son back to the same hospital where that Paediatrician is – because that is where the Paediatric Neurologist is and getting an appointment without a referral is really difficult. But, do I want to even speak to her, much less fight to have her validate this?? Or do I move to Sunninghhill Hospital (50kms away) and try to get a direct appointment with another Paediatric Neurologist? Either way, I need to make a decision by tomorrow and get a move on again – being at a standstill is not healthy, proactive or good in any way!!
In the midst of all of this, Malakai continues to be interactive, smile, eat and sleep well – so I believe he is going to be ok. My instinct tells me that this will be ok – we just need to find the cause and then the solution.
Thank you again to everyone for caring and sharing your thoughts and advice!