We are the Stow Family and this is our story. Our lives are blessed by Love, Joy and Hope. Follow our sometimes interesting stories on loving our two boys, exploring parenthood, and celebrating a little extra - two parents, two boys and an extra chromosome!

Thursday, April 16, 2009

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!


Anonymous said...

I agree, you need to be proactive, find a cause and a solution asap. Malakai deserves the best help. :)

I have a strong feeling that you should move to Sunninghhill Hospital and GET a direct appointment with another Pediatric Neurologist.

Everything is going to be well!

Heather said...

Yes ...everything will be ok.Now, I know this might seem a bit,well, not right but have you considered video taping these episodes.I have known several of people who have done this.One, for others,mainly their peers,advice and a different set of eyes but two,to forward it to a specialist.It can be very helpful as sometimes these movements,when visualized, can be of great assistance.Just an idea.I would travel the distance to the other neurologists.Go where the best is.You continue to do all the right things for Kai and you will continue doing just that as the days progress.Trust that mommy instinct.It is seldom wrong.Take care.Take a deep breath and forward on ... for Malakai.

Anonymous said...

Hi my friend,

Know that you guys continue to be in our thoughts and prayers and we trust that you will make the right decision and that you'll find a cure for whatever it is that is causing Malakai discomfort. Just keep the faith!!!

Give Kai a HUGE hug from us!!

Lots of love
Coreen and Grant

Conrad, Megan and Our Precious Keaton said...

Hello my friend, I can only imagine how you must feel by getting everyone elses opinions ect, but Heather is right, trust your mothers intinct - it is seldom wrong! For a new set of eyes on the situation - I would travel to Sunninghill for a consultation and a second opinion - I strongly believe God sends you to the right places at the right time.
As you say "All is going to be Okay", we just need to get to the bottom of it and find a solution - there simply is no other option! Lots of Love and Big hugs for little Kai!

Lisa Reid said...

Go to Sunninghill, shame man I can only imagine how it must feel to have to sit by and watch, all will be fine though I just know it : )