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

6Jul/140

A Visit From The Past

On Monday Fred and I drove Ruby to Dingle. It was Ali’s birthday and the girls were having a party. On the way out we picked up Ruby’s friend Ella and Fred was happy to be escorting the girls. He was quiet though, usually he’s full of chat and Ruby will inevitably tell him to turn around, to leave them alone. Typical older sister, younger brother despair.

After dropping the girls the two of us drove over the Conor Pass on one of those warms sticky days that summer is all about. As we drove back along the straight road to Tralee Fred was still quiet. Again I asked him why he was so and he answered that he was looking at things out the window. The things he began to recite and after a long list he went back to looking. It worried me that he was so sluggish, not exactly himself though he claimed all was ok.

About 5pm we got home and Fred wanted to go for a walk around the estate. I gave him a swipe of the magnet and off he went, looking for something to do. After a few minutes I went to check on him, he was doing fine, balancing on the kerbstone and he waved over when he saw me. It’s such a feature of the little man’s life having his parents constantly checking in him, that he’s became used to it. I went back inside to start dinner.

A couple of minutes later I saw Fred running across the courtyard to the house, a worried look on his face. By the time I got to the door he was bursting through...

“Dad, I got the confusion, bad confusion,” he said when he saw me.

It must have been bad for him to try and make it home so quickly. He took his medicines, I swiped the magnet and we settled down on the couch. He was jerking but the constant swiping seemed to ease it. Lisa came home shortly afterwards and took over as I had work to finish in my office upstairs. When I came down about an hour later Fred had had a seizure, the usual tonic clonic and was asleep in Lisa’s arms. It had only been six days, the shortest gap in a while, a long while.

He didn’t stay asleep for long as is the normal these days but when he woke he wasn’t hungry. Lisa got him back to sleep again but he woke about an hour later. This time he picked at some dinner, not much and fell into his mother’s arms once more. Then he had another seizure. This was heartbreaking for us, a short seizure free gap and now a second one; this was the sort of day we hoped was behind us. Fred recovered quickly, enough to start watching a DVD but about 9.30pm he went up to bed with Lisa.

I was watching the World Cup and at a break before extra time I went up to check on them. As I got to the bedroom door I heard Lisa tell Fred that Daddy was downstairs and would be up soon. Back down I went and turned off everything, Fred’s sleep was the priority that night.

In bed Fred cuddled up to me and Lisa said to call if anything happened. The third seizure broke through about half an hour later and Lisa took over again. This really was like old times. Fred had three more before 1am when Lisa got his morning medicines into him. Five hours earlier than usual but in these times we try anything. It worked and Fred fell into his deep sleep.

Of course Fred managed another one the next morning, just before he woke. He didn’t want to stay in bed though and came downstairs a bit later to take up residence on the couch. There was a cloud over our house that day, we were worried that the cluster wasn’t going to stop and we were very down that Fred was going through this all over again.

The progress he’s made over the last few months has all been down to keeping the seizures at bay. The school and everyone else has being keeping Freddie moving forward, gaining from the freedom he was enjoying. Now in one day it felt like everything was being taken away again, as if the good times were only a tease, epilepsy playing with us again.  Watching Fred sleep his way through a day once more, lifting his head just to look around or waking from time to time to watch simple TV programs was heart breaking. Those programs which he’d stopped watching, ones that aren’t the least bit taxing, and the ones we hoped we’d never see again.  It was all back with a bang. Even Lisa had a Stesolid on hand, just in case; a drug we haven’t had to use in months.

Ruby came home and Lisa went out for a walk. The house was returning to normal. As I was pottering around out the back, getting a few jobs done before more football I heard a crash in the kitchen. Looking around I saw Fred’s legs sticking out from behind the sideboard. He must have known I was out the back and was following to see what was happening. The seizure must have caught him totally off guard, just as he was coming into the kitchen. Ruby and I picked him up and got him back to the couch, again just like old times.

That last one was epilepsy saying goodbye, the last kick as it left the house. Fred woke not long afterwards and watched a DVD before going to bed. The next day we had a visit from his Aunty Ella and Dan but Fred wasn’t interested, he was zonked from two days of activity. He had some egg and toast around midday which was the first food he’d eaten since Monday evening. Progress in the circumstances.

So that was Fred’s week. Only yesterday was he really anyway like the Fred of previous weeks. The two of us went to the library in the morning, part of a plan we’d devised to keep Fred’s reading progressing. He read well but nothing like he’d been doing with Ms O’Se the previous week. The idea of the library is the choice of books and an environment where reading is what everyone is doing. We’ll try it again though, yesterday was a partial success.

Why did he have such a major setback? Well Fred never does things by halves that much we do know. Was it that for some reason his meds failed, the levels in his system dropped, leaving a cluster through? We can only hope that it was a temporary setback, that the VNS will take over again and the great gains of recent times weren’t just a flash in the pan.

Only time will tell. For now we all have to get our trust back, trust to leave him wander alone again, trust to do the things that were becoming normal for us to do. Yesterday Lisa took Fred shopping with her and all went fine. Today Fred wants to go paddling, weather permitting we’ll give it a try.

Our hearts will be in our mouths but we’ll give it that try.

 

 

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Posted by John Verling

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