And just like that, my son no longer eats blue loo!

By Kelly Wilton

Where does the time go!

It’s been a big seven years, and this one, 2018, has been particularly noteworthy.

It seems like only yesterday that our son, Mikey, was digging into a jar of Vegemite on the cream coloured carpet in our rental property, progressing to chewing on tablets of blue loo. 

Nowadays, you’ll see him be a bit more discerning with his choice of savoury snacks, opting for an apple or 12.  I usually find three a day around the house – one in my bed, one down the couch and another under the table!

If you had told me back then that the days of chewing on blue loo tablets would one day be over I would have sighed and said, ‘if only’. That the regular phone-calls to the poisons helpline – ‘my son has just put a dead cane toad in his mouth’ – would one day be a thing of the past, I would’ve given you an eyeball roll so steely, you would have wished you had eaten a jar of Vegemite.

But yes, it’s true!  All those funny little antics – with the above being on the more dangerous side – are what our memories are made of.  Our little Danger, who is no longer so little, is near to finishing his first year of school while living with half a brain since a life changing operation last year.

The choice of whether your child should undergo a hemispherectomy does not come easily to any parent who has faced, or is currently facing, this decision.

It is a huge onslaught of emotions as you are hit with all manner of questions:

• is it the right decision?
• will it even work?
• what if the seizures come back?
• how will his siblings handle it?
• will there be enough jars of Vegemite to sustain him through his recovery?

All these are very valid questions and ones which we agonised over. The short answer is yes, it did work. The surgery got rid of his seizures from the damaged hemisphere of his brain, and although he has experienced seizures since the surgery, his quality of life has greatly improved as he is no longer battling with an uncontrolled hemisphere.  His ‘good’ hemisphere is now taking the leaps and bounds it so rightly deserves allowing him to thrive, grow and develop cognitively, physically and emotionally.

We have seen great leaps in his development. When your little seven year old, who for so long has been described as non-verbal, says SH*T – in the RIGHT context, you can be sure there were high-fives all round!

I can only imagine what the next 12 months will bring, and we thank all followers of our blog and posts for Source Kids for taking an interest in the life of our boy who lives with HHE Syndrome.  As his family, we are so  #SoBlessed to have him remind us what is truly important in life.

 Unfortunately, as life so often does, the white noise of everything else can often drown out the simple yet important moments that are right in front of us.  Like, how many chicken nuggets can you eat before you actually start to cluck like a chicken?

Apparently, it is a lot – something that we discovered on Mikey’s road to recovery which was led by a trial of chicken nuggets (blue loo not included).

Onwards and upwards my friends (with some detours along the way), onwards and upwards!