epilepsy · Living with Epilepsy · Mama bears story · Seizure · The seizure queen · Uncategorized

The Gremlins Adventures.

When we were told Oscar had to have a 24 hour EEG we weren’t very optimistic, but when they said it would be at home, we were even less so. He is a very active child and doesn’t like anything on his head, hoods, hats, hands, so for him to last 24 hours with wires attached to his head dangling down to his waist, well we didn’t think he’d keep them on. But we went for it anyway, have it a go in the hopes he’d surprise us.

The letter said it would take an hour to apply the wires, and to bring something to keep him occupied. Naturally we brought his tablet and played an episode of Blaze, he didn’t move. One worry down. It only took around 40 minutes as well, so bonus!

He may only be 2 but he knows what a bribe is 😂. He knew if he didn’t fiddle with the annoying pack at his waist or the tentacle like wires hanging from his head, he’d be spoilt with sweets and strawberries and little toy cars.

The box was the most annoying thing for him, he wasn’t bothered by the wires so much, but, they were all taped out his way. The box was attached to a belt around his waist, this belt was too big, I could easily fit 3 fingers in the gap so with the weight of the box it kept falling down and dragging his trousers too. We changed him into leggings pretty quickly, and did his first bum change then too. This caused such fear to erupt from his little heart, I had to change him whilst daddy held his hands and soothed him. It was awful to see and we don’t understand where it came from.
When we left the hospital we were given this chart, to write all the days activities and his emotions in, we guess that this was because they need to know what he was doing or if he was screaming, for instance, to determine what they brain waves are saying.

We eventually managed to tuck the computer box into his cardigan and the rim kept it lifted slightly better, allowing him to finally sit reasonably comfortably and watch a bit of Bob the builder. He was so tired he just wanted to sit. Even Mally somehow knew not to play with these dangling threads of fun and he checked on Oscar constantly.

By 7.30pm he was sat eating dinner, albeit a little awkwardly and we were desperately trying to figure out the best way for him to sleep that night. It wasn’t going to be comfortable, any which way, but there had to a more surpassable way than leaving a box digging into his back.
Not only that, but, my brain had to join in on the action too, it obviously felt left out 😒. My seizures were only the small irritating Myoclonics. Mainly, eye rolling, lip twitching and hand shaking but I knew they were likely to get worse. Being the stubborn mama I am though, I didn’t tell Richard. He had enough to stress and worry about with oscars EEG.

Surprisingly Oscar slept really well, he went straight to sleep and didn’t wake until 3:15. He had a bit of a whinge then, but who could blame him, his hands were all tangled in some wires he’d probably forgotten about until then. We quickly got him back off to sleep and he stayed in a blissful slumber until 9:30 😱. I couldn’t quite believe it. In all honesty, I woke him up when I went to check on him (stupid squeaky floor boards), but I couldn’t help but worry, he never sleeps that long. He was fine though.
The morning was definitely rocky, reattaching the box to the belt, changing his bum (same reaction as last time 🤔) and just in general. We could tell he’d had enough of this weird contraption that seemed to be following him around.

To be fair to him though, we imagined those 24 hours were going to be awful, torture, mayhem – you get the idea. But, as usual, when it comes down to it, Oscar was as good as gold. Yes there were bumps in the road, but for a two year old, he did amazingly. Unfortunately we do still have to wash the icky glue out of his hair, that won’t be fun – the child seems to hate the water on him above waist height. 😫

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Now it’s just the long arduous task of waiting for the results. Fingers are crossed. 🤞

4 thoughts on “The Gremlins Adventures.

  1. I hope its good news for him and you guys …
    But you and your little family are so amazing and inspirational that I’m sure you’ll all be fine whatever the outcome …
    Always a pleasure reading your posts Chloe …
    Hope washing his hair is not too traumatic an experience for you all 🙂

    Like

    1. Fingers are crossed Stephen. Thankyou 🙂 it’s hard but you have to crack on as I’m sure you know. Washing his hair will probably worse than the whole test 😂

      Liked by 1 person

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