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

11Nov/120

Shaking All Over

Freddie is asleep in his mother’s arms. The duvet, the white blanket as he calls it, has been brought down from the bedroom and he’s snuggled up under it. The duvet coming down from the bedroom is a sure sign of winter, that and Arsenal’s title challenge slipping away.

He’s asleep as the introduction of the Phenytoin is taking its toll. As usual we don’t know if this is a temporary thing or a sign that its not going to work as an AED. Lisa and I are beyond making any sense of it all, we just have to try the drugs, that we do know, but ask us if we think it will make a difference, neither of us have a clue at this stage. It’s certainly making him more jumpy, his limbs are constantly twitching and at times his whole body makes these uncontrollable jerks. He walks at a slow pace, seemingly being careful of his peripheries, and again he’s finding speech difficult. For Freddie’s sake we hope this is a temporary stage before there’s an improvement, but only time will tell.

Last Sunday night, Freddie and I were going to bed about 11pm. As he’s falling asleep during the day or Lisa is encouraging him to snooze so as to control the jerks, his sleep pattern is all over the shop. Usually he’s off to sleep by about 9pm, after having a sip of “Daddy’s beer” if I’m lucky enough to be having one. As I was washing my teeth on Sunday evening, Fred was choosing a book for a bedtime story. Suddenly I heard a “whoah” from the bedroom and the thump of a body hitting the carpet. I rushed out to find him thrown back between the bed and the radiator. Thankfully, he was conscious but very dazed. He’d had what he calls a fright, a tiny frontal lobe seizure that doesn’t develop but enough to knock him off his feet. I called Lisa and she rushed upstairs, swearing as she ran. She gave a shot of Diazepam to settle him and sent me to the spare room as I was working in the morning. The two cuddled up in the bed, as I left I looked over at the man, still awake but the eyes closing, he never has it easy.

On Monday morning I came down to that sound I hate. Freddie moaning in an after seizure state. As it was only 6.50am I had hoped to surprise Lisa with an early morning cup of tea. As it was, she was helping Freddie to the bathroom, the big seizure had struck as he slept and as he as was coming around he started to moan, meaning he needed the bathroom.  We sorted him and put the little man back to bed, to let him sleep. Lisa got her early morning cup of tea, Ruby and I got ready for the Dingle departure at 8am. Before we left Lisa, Ruby and I had our morning coffee in the bedroom while Freddie slept. Lisa remarked that it reminded her of last winter when many a cup of early morning coffee was shared in Tralee General Hospital. At least this winter we’re sharing that cup of coffee at home, an improvement of sorts on last year.

As the week moved on Freddie got shakier and often I’d come home to find him asleep. The one day he wasn’t, Thursday, he came up to me as I walked in…

“Daddy, I’ve bad news,” he said, his little hands cupping his mouth as if he was revealing a secret.

“What’s that little man?” I asked in reply.

“I fainted!” his little eyes wide open, hands thrown up in the air.

I looked at his mother. She’d come in from the kitchen about 4pm to find him getting up off the floor, seemingly ok but Fred thought he’d had a fright. Maybe something had hit, who knows.

Friday night he was particularly bad, shaking and jerking all evening. Just as he was going to sleep, a small seizure struck, something that has happened for a while now. It was just a small five-second frontal lobe one but another memory of last Winter when going to sleep was a regular trigger. A regular trigger for a full-blown seizure and a trip to the hospital. This time we were able to give a shot of diazepam but instead of settling him, he woke fully. It’s amazing the ability this man has for processing medicines. Sometimes they knock him, sometimes they do not. Lisa took him off to bed about 9.30pm to try settling him in a different environment but when I went up about 11pm he was wide awake. Mummy was despatched and he cuddled up to Daddy.

Soon Freddie was sawing logs, another of my father’s phrases for sleeping, wherever he got them all. My father used them a lot, as he was always encouraging us to go to bed early, probably more out of wanting peace for himself more than any Victorian attitude to child-rearing. 8.30pm was my bedtime growing up, no watching DVDs or X-Factor in our house, the house would be silent by 9pm, in darkness by 10pm on school nights.

Without exception…

The weekend has gone much as the week before went. Fred has been sleepy and dropping off at regular intervals. Last night, about 6.30pm, he asked if he could cuddle up to his mother and was asleep before he was in her arms. Twenty minutes later he was up again, the power nap had done its bit. The same happened during the day today but with no ill effects slipping in.

Now its Sunday evening, Freddie is watching a DVD, Ruby and Lisa the X-Factor. Not a programme I like watching and I sit with my back to the screen.

 

So she doesn’t feel neglected, I turn round when Nicole Scherzinger comes on…

 

 

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Posted by John Verling

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