New year, new diagnosis

I’ve been asked a lot lately why I havnt been doing my blogs.

I’m not entirely sure why but I think it’s a combination of reasons.

It’s been a crazy start to the year with our oldest Kaeden being diagnosed with focal epilepsy after having his third seizure.

In total he had two during his sleep and the last one was at school where the whole right side of his body went floppy and he zoned out.

I was in my first week of my new job and flew out of there like someone had lit a fire under my bum (I was surprised to learn this chubby girl can move when she needs to)

It was such a stressful time with starting medication, seeing a neurologists and getting tests.

I went out and bought the most expensive baby monitor on the market. It even has a camera that follows every move he makes like he’s an animal on a David Attenborough doco (you know the ones they build into a fake animal that they try to fool the others into thinking was always apart of the pack..it’s creepy right)

He is such a resilient kid though. He was actually excited to start medication strangely enough. He was happy to be having medicine just like his little brother does. There was even one day when we were still trying to get in the routine of giving his meds twice a day we forgot one morning before school so I raced to school in time to catch him still on the school bus waiting to get off when I ran on and made him take it in front of a packed bus. I know what you’re thinking..how embarrassing(am you’re right. I have no idea what I was thinking)

But Nope..he loved it because all his friends got to see him take his awesomely cool medication. (If you think white sneakers are trendy try having regular medication. It’s so fetch). I can still remember his brothers confused face as I disappeared as quickly as I’d appeared and hearing him say ‘what was mum doing on my bus?’

I was still so worried he’d have another seizure though. I would stay up until crazy hours watching my baby monitor screen( glued to it like I was watching Mafs waiting for the next stupid thing Bryce was going to say) thinking any minute I’d see him convulsing and have to sprint in there to move his pillows away from his head.

I have only just recently stopped obsessing over it. I even had to get prescribed a sedative at night at one point as I couldn’t sleep. (It didn’t help that every time the house creaked it came through the monitor louder than a fire cracker being let off by teenagers an hour before midnight New Year’s Eve) I swear I got whiplash from turned my neck so fast to check the monitor.

I then received the two things I’d been fearing when he came home from school one day. A notice for camp AND a notice for swimming. Two of Epilepsy’s worst enemies….swimming and being away from mum. Ok ok maybe it’s not epilepsy’s worst enemy, it’s my worst enemy but still…arghh. Usually I just fear camp notices because of the cost.

Another layer of emotions with Kaedens seizures for myself and Josh was that it brought back a lot of emotions from Kaedens birth. His brain damage is what is causing the seizures and now he is also having a problem with his eyes turning in. Not both at the same time, they seem to have different shifts. Right eye one day then the left the next. (I’m always teaching the kids to share so it’s only fair his eyes do too)

When we got legal advice in regards to his birth and the negligence we were told that even though we had an MRI to show the brain damage we had to be able to prove permanent disability within three years to pursue anything.

When he started to grow and it was clear he had learning difficulties and microcephaly (a small and slow growing brain) we counted our lucky stars that it wasn’t worse considering what his prognosis was.

So I think this was just a kick in the guts.

We are so proud of how he just takes everything in his stride and keeps being the crazy ball of energy and personality that he has always been.

BB xxx