Daisy And Me People I meet when on my walks with Daisy

9Sep/120

The Tooth Fairy Cometh

Freddie and I are lying out on the couch, its raining outside and the two ladies in our lives have gone shopping. Apparently, Ruby needs clothes for a trip toGalwaynext weekend and I thought it was a football tournament she was off to. Fred is playing with a camera, one of the things he loves is taking photos and he’s very good at it. At the same time he’s watching some Spiderman cartoons from the 1980s, another favourite. Now he’s trying to take photos of me doing this, one I can show him in years to come I suppose. All very post-modern.

Earlier I was upstairs, in ‘Daddy’s Office’ as Fred calls my little bolthole on the top floor. Lisa was downstairs in the kitchen, Ruby on the couch relaxing and Fred was in our bedroom on the middle floor, playing with his toys. Leaving Fred on his own is something Lisa and I find difficult to do, something to do with the amount of times we’ve heard him collapse when we’re out of the room. We have to be brave, Freddie has to have a life too. Up on the floor above I had both ears opened, listening to him play and I’m sure Lisa was the same downstairs. He’s been ok today but you never know. After a while, I heard Lisa go into his room…

“Freddie? Where are you?” I stopped and listened, it’s not that big a room…

But all was fine, he was in the shower. A simple, ordinary thing to do but something we can’t let him do on his own. Freddie obviously wanted to be a big boy and do his own washing of the hair. Unfortunately for him, we can’t allow it. Showering can be a trigger, baths can be worse and if he fell over in the shower unattended, the consequences would be high. All was ok though and Lisa helped him finish. It’s such a pity that the little fellow can’t even do these things on his own and he clearly wants to…

The week just gone was a disappointment compared to previous weeks. On Monday, I came down to Lisa in the kitchen getting a cup of tea, Freddie in the front room getting the Connect 4 game out. Over the weekend we’d been teaching him how to play it and he was getting into it. Suddenly I heard the sound of the game falling to the floor and rushed in to find him thrown across the floor. He wasn’t seizing though but as we picked him up you could see from the fearful look in his eyes that something had happened.

We asked what he was doing on the floor.

“I got a big fright” was his answer, sounding somewhat confused.

Getting a ‘fright’ is Fred’s way of describing the mini-seizures he gets, maybe only a few seconds long and usually throw him as if he got an electric shock. This one had thrown him off the couch and shows why at the moment we can’t let him do much on his own.

Lisa cuddled him up to her and I went to make the breakfast. Unfortunately, that awful sound of a full seizure soon followed and we had to take the usual action. Lisa gave him a shot of Diazepam and laid him out for a snooze. It was a fairly mild seizure but we can’t take the chance of a cluster developing. Ruby and I left for Dingle about 8am, leaving the two cuddled up under a blanket. On arrival I called home as normal and all was ok. He’d slept but was now awake looking for breakfast.

A relief.

On Wednesday, Lisa put up his dose of Vimpat. We had put a lot of hope in Vimpat but its taking a lot out of him as he gets used to new doses. By Wednesday evening his speech was affected again, as if he was doing an impression of Don Corelone. It’s heartbreaking to witness but we have to persevere, see if it does eventually improve things. The same old ding dong with these AEDs, months to find a therapeutic dose, months to come off it if it subsequently doesn’t work out.

On Thursday, Lisa had an appointment and had to take Freddie with her. They were driving around the car park for quite a while, trying to find a parking spot. Just as they found it, Freddie began to feel faint and they had to go home. By the time I got home that evening he was fine, a good rest had done the trick but he was still full of twitches. Something is not quite right with all the meds at the moment, the peaceful couple of previous weeks seem a long time ago now. Maybe, I hope, it’s the adjustments to the medicines with the addition of Vimpat but it’s very upsetting nonetheless and only time will tell. Fred put down a peaceful Thursday evening, with us watching him like a hawk.

Friday evening I came home to Freddie laid out on the sofa. Earlier he’d been on the way to the bathroom, with Lisa, when he’d had a fright that threw him to the ground. After he’d taken a rest on the couch a full seizure broke through, knocking him for six. Lisa had looked after him and we settled in to a now far too familiar night of Freddie watching. I’d been looking forward to a Friday night of relaxing in front of the television with the beer I’d bought in Dingle and I should have known better.

Yesterday was another total wipe-out. Fred was full of twitches and jumps. His speech was especially bad. By early afternoon Lisa had had enough and gave him some Diazepam to try settle him, it worked but knocked him out again. He woke not long after Ruby and I got home and put in a fairly normal evening. By about eight the full effects of the Diazepam were taking hold of him and after much persuasion, he went to sleep. He slept the sleep of the just till about 7am and was much the better for it too.

Today he has been better. “Welcome back” I said to him this morning as it was the first time in days he was someway alert. Now, as the day has progressed the twitching and doziness has returned. Again, after much persuasion he’s taking a nap on his mothers lap. Let’s hope he wakes up someway more together.

Earlier in the week, Freddie pulled out a tooth that was loose for a while and bothering him. As he hasn’t lost many teeth, about one a year, the legend of the Tooth Fairy is still alive. He rang me at work to tell me that the Tooth Fairy was coming that night. The excitement of what he was going to buy at ‘the toy store’ was massive. That night we went to bed and he placed the tooth under his pillow. Later I woke up, slid out the tooth and slipped a fiver in. Towards early morning, I heard him check under the pillow. His hand quickly crumpled up the fiver into his fist.

“What’s that?” I asked

“Nothing” he answered, waiting for the morning light to check for certain, probably.

When Lisa came to wake him at 7am he was stretched out, hand still in a tight fist holding the fiver. When he woke fully and saw what he had, he was only delighted, over the moon with what he had…

“Look Daddy, look what I got”, his little face aglow with happiness.

 

Does anyone know an epilepsy fairy?

 

 

 

 

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Posted by John Verling

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