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

8Jul/120

Shepherds Pie

Another Sunday morning in Ballyard, a week gone by and its still raining. It did stop occasionally during the week, brilliant beautiful sunshine, blue skies, t-shirts, stunning sunsets, sun burnt kids followed by thunderstorms, all in all a traditional Irish summer. As I was working for most of the time and thus inside, the weather was somewhat irrelevant but still nice to know some good stuff was out there. It’s amazing how, once we’ve had a couple of hours of sunshine, the bad weather is immediately forgotten, must be some inherent gene that makes the Irish climate bearable. If we didn’t have it we’d be all off our rockers by now,Irelandone gigantic funny farm of pale skinned people muttering about the mist.

 

Once again, the Transformers are saving our planet from the Decepticons. Freddie asked for the old Transformers recently and started singing the theme tune from the series so I’d know which one….

 

With his hands doing the actions, he sang:

 

“The Transformers
More than meets the eye

The Transformers
Robots in disguise”

 

Or, at least words to that effect and every series sample episode I brought home just wasn’t the right one. “Oh Dad, you got the wrong one…again” and he’d sing the tune…again. As far as I could make out the theme tune was the right one. Well this week I hit the jackpot, he wasn’t so convinced by the opening credits but loved the cartoon when it started. The look on his face made all my searching worthwhile and his hasn’t stopped watching the complete 1984 series since. The voiceover at the start, in an attempt to sound futuristic, says “Its 2005 and the wars are over…” Little did they know that my little man would still be watching them in 2012…

 

Elsewhere in the house, we’re just emerging from a typical lazy Sunday morning. Ruby has arrived down, laptop in hand, to take up residence on the other couch. A trip to Hannah’s has been planned but she’s awaiting the all ok from Baile Eanaigh, much to her annoyance. She’ll be even more annoyed when she finds out that she’ll be going by bus. Lisa, after a morning under the blanket reading her Kindle, is sweeping the floors and discussing wrinkles with Ruby. Apparently she has a wrinkly face, news to me after 17 years….

 

Fred is demolishing a bowl of Shepherds Pie, it’s a current favourite and when he found last night’s leftovers in the fridge, he knew what he wanted for lunch. He did want it there and then as a snack but took the promise of a bowl for lunch instead, very reluctantly though. For him now though it’s been worth it, with a nice lunch and watching his Transformers, cuddled up with Dad on the couch. The pleasure is mutual, even though I haven’t been brought lunch on a tray.

 

The week gone by has much the same as other weeks. We’ve still haven’t any concrete news on his PET scan, even though Lisa has been burning up the lines between here and CUH. There was a meeting on Friday morning and they still haven’t calibrated the new PET scanner for children. This can’t be done till a certain amount of adults are scanned or something like that. The assurance is that as soon as it’s ready for Fred he’ll be called, no appointment, just a phone call as he’s top of the list. We’re not holding our breath but Lisa was told on Friday that it will be this month. We’ll have to see but all the advantages of keeping this in CUH are fast running thin. The flip side is that if we go elsewhere we’ll just be a number on a list, probably way down that list, without the personal connections we have inCork. If the HSE wasn’t so under funded and mis-managed none of this would be a problem…

 

In line with other weeks Freddie is beginning to feel tired and a bit disorientated when he feels a seizure coming on. It’s a vast improvement on him suddenly keeling over but the downside is that he’s only getting a three or four day break between attacks. The withdrawal of the Frisium isn’t helping. It’s taking weeks as we’re only cutting 2.5grms every 21 days but its such a strong one that that’s the recommended format. He twitches a lot now, especially when sitting still or concentrating. His little fingers or his hands will jerk uncontrollably, the legs jumping under his blanket. It’s unnerving to watch but he doesn’t seem to notice. They aren’t there when he’s sleeping but get very bad with the onset of seizure activity. So, if on the third or fourth day, his jerking is particularly bad combined with him being very tired we know what’s on its way

 

On Wednesday Lisa and Fred were going into town to so some shopping. His twitching was bad but not too bad. Fred got himself into the car but Lisa took one look at him as she got in and thought better of it. They had a little disagreement on him feeling “faint” but mother won out and the trip was cancelled, much to Freddie’s annoyance. As I was at work Lisa rang to say that they were settling in, the signs weren’t good and Freddie was going to sleep, waiting for the seizure to kick in. Its horrible being so far away not knowing what’s happening and as soon as I could I shut up shop and headed home, it was almost closing time anyway.  With the shopping done, it hadn’t been possible for Lisa to do it, I headed up and over theConnorPass, wishing my boy well.

 

The road to Ballyard, I turn off at Blennerville Windmill, was flooded so I had to turn round and go the longer way but still made it home in good time. Not wanting to fret myself any more than necessary I never call when on my way home, if the situation warrants it Lisa will call me. That’s the call I hate…Anyway in the door I came to see my man sitting up eating a bowl of Spaghetti Bolognaise and Lisa smiling at me. Fred looked up, sauce all round his mouth and said, with indignation...

 

“Mummy said I was going to faint, but I wasn’t, it was just her imagination”

 

Maybe for once, Mummy was been over cautious but she’s rarely wrong and the same situation unfolded Thursday afternoon, this time with consequences. The seizure broke through after Lisa had put him down to snooze on the couch. Nothing major just the now usual minute long body jerking, full fencing movement seizure that has become the recent norm. Lisa gave him the diazepam and he slept peacefully for the next few hours indeed he was till asleep when I came home. The long sleep is a bit unusual, he slept on till about 8pm when he woke for dinner. After dinner he was still dopey, some mixture of medicines is keeping the clusters at bay but taking a lot out of Freddie. In my mind, I think the reduction in the other meds is letting the Tegretol work, preventing the seizures spreading but not stopping their onset. Maybe when we get the weaning of the Frisium and Keppra finished and the Vimpat introduced our Freddie will get a longer, much longer break between episodes. That’s the wish of his parents, for now, that’s all we want…

 

One great improvement we’ve noticed recently is that the cloud of confusion that was covering Freddie’s brain seems to be lifting. The more he comes off the Frisium the more his concentration, alertness and memory is improving. This week as Lisa was driving Freddie around Dingle he started up with:

 

“When I was a baby we used to visit Siobhan in that house” as they passed Siobhan’s.

 

“When I was a baby we met Aunty Clare in that house” as they passed a complex of holiday homes…and so it went on.

 

The ‘when I was a baby’ is Freddie’s phrase for what he’s remembering now that the drugs are allowing his brain and memory to work.

 

Another one for the lexicon.

 

 

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Posted by John Verling

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