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

16Dec/120

I’d Love a Pint but…

Another weekend and we’ve got to Sunday evening. Freddie is sitting on the couch demolishing a plate of chicken, mashed potatoes, cauliflower cheese and fresh peas. Now he is stuffed, watching some old Mr Bean TV shows and I have my back to it. Ruby after demolishing a plate similar to Fred’s is on Facebook, tired after two days of shopping. Yesterday I took her, Hannah and Tara to the great city ofCorkto do some Christmas chopping and today Lisa took Ruby into Tralee for more of the same.

Lisa also went and got the Christmas tree. Freddie has been on about getting it for the last month. For some reason or other we just didn’t get it yet, but I’m one for just the week before, much to the kids displeasure. Also on the mind of Lisa and I is how Freddie collapsed in a heap when we were putting up the tree last year and spent a few days in hospital. Something we’re keen to avoid these days. Now when will we pluck up the courage to put it up and decorate it. The tree is ready and the decorations are in a box, we should get the two together by Wednesday.

The week gone by has been much the same as previous ones. Even though we are seeing improvements in his awareness and interest in the world around him, Fred is still getting seizures. On Tuesday he was in great form, chatting, drawing and talking about friends he hadn’t seen for a while. When he was settling for sleep on the couch, he asked for a sip of my beer. A tradition now, when I open a beer he has the first sip. Something I too used to do with Dad’s bottles of Phoenix or Guinness back in the seventies. As he held the glass, he jerked or didn’t concentrate properly, both consequences of the meds, and spilled it on the blanket. With both parents giving out, he went to the corner and stood with one foot leaning on the other knee and his arm against the wall. A classic Freddie pose. After we cleaned up the mess, he settled into the crook of his mother’s arm…

“Ah Mum,” he said, “when I was in the kitchen with Dad I had the confusion.”

The confusion is his way of saying he feels a seizure coming on. He had been helping me cook dinner earlier and actually seemed fine.

“Do you have it now?” Lisa asked.

Fred nodded…

Lisa and I took him up to bed and as I go the bed ready, he went to the bathroom with Lisa. On his way to bed, I went to give him a cuddle and he fell into a seizure. Lisa cared for him on the carpet and when it was all over, we put him into the bed. We gave him a shot of diazepam and I left the two to settle in for the night.

Back downstairs, Ruby and I watched some TV and after she went to bed, I read for a while.

On my way to bed, I looked in on the two, Freddie was awake. Sometimes he has a remarkable tolerance of medicines, the diazepam should knock a horse but Fred was having none of it. I kissed him goodnight and headed off to the spare room.

The rest of the week went ok, he was having little frontal lobe seizures, five second ones every now and again but nothing too much. It just happened that the day he was due to go to the hospital, Wednesday, for blood levels on the Tegretol, he got sick. So the appointment was put off till Friday.

Friday morning and Lisa is with Fred in bed. Ruby wasn’t up for school, sometimes all the driving to and fro is just too much and we take a day off. Suited me perfectly, with my course starting at 9am, Friday is a busy day for me. The luxury of being able to have a coffee without having to rush, was much appreciated. Lisa and I were relaxing and chatting when suddenly Freddie went into a seizure. The usual one minute one, but a seizure nonetheless. Lisa comforted him, settled him on the pillow and gave him a shot of Diazepam. This time he rolled over and fell back asleep.

He’d had a tiny one with me about 6.30am but we didn’t think much of that. Plus as he was going over to the hospital for blood levels we’d held off on giving him his medicines. Maybe we should have been extra careful and given the meds but we do need to get the levels taken so we know where we are with his daily dose. It has to be at least twelve hours since a dose before you take the blood sample. As a result we still don’t know if he’s ok on the current dose or if he could take an increase. Lisa and I both feel that an increase might stop the current cycle of every couple of days, I’d take once a week at the moment. The problem is that you can’t increase the dose without checking how the liver is processing the current one. A little too much can stop the whole thing working properly causing all sorts of problems.

Unfortunately, Freddie is the man for the problems, if there is one out there Fred will find it.

On Friday evening Ruby had the two, Hannah and Tara over for a sleepover, part of the whole trip to the real capital. After feeding the hungry teens, I went to meet my fellow students for an end of term pint. This was the first time I’d been out for a pint for a long time, first inTraleesince we moved here eighteen months ago. The company was great but I couldn’t relax, all around me were people drinking and having fun. All I could think of what could be happening at home. I kept checking my phone in case I missed a call or text. This epilepsy has us living on our nerves night and day. Much and all as I wanted a pint, I only risked a non-alcoholic Becks, I just couldn’t let myself have anything stronger…

Maybe next time I’ll have the courage for a real man’s pint….

Now after a weekend of travelling to Cork, leaving my darling daughter free on the poor shopkeepers of that fair city, its Sunday and we’re settling into an evening of relaxing. Freddie is now reading some story books Lisa got for him. Its lovely to listen to hear him read out loud, pride in his achievements, looking at me from time to time to check if I’m listening and to see my approval.

There is a bottle of 6% Shepherd Neame IPA waiting for me in the kitchen, the little man might get the first sup again…

 

 

 

 

 

 

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Posted by John Verling

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