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

21Apr/130

Fred and The Two Cathys

Its Sunday morning again,  the weeks seem to pass quicker at the moment but at least I can report another seizure free week, nine days of Freddie being himself and getting on with his little life. On Friday evening he went for a walk with his Mum, just a short one over to the green area near our home. When they were playing, Lisa noticed that look in his eye, the one when she knows not all is quite all right. When asked Freddie, said he could feel the ‘confusion’, that horrible state he gets pre seizure. Lisa walked him back to the house. She was upset that the confusion had come on him when out on a break, we’re only getting brave enough for small walks and don’t need any setbacks. Luckily he made it back to the house and curled up in his mother’s arms to try sleep it off.

Ten minutes later he was awake. The confusion had passed over him; maybe because he had the nap or maybe due to Lisa giving him his medicines an hour earlier than usual. Either way we got through the evening, had a fine dinner of roast chicken, roast potatoes and cheesy cauliflower before heading off to bed about 10pm. When I went up about an hour later he was fast asleep, wrapped around his Mum without a care in the world and didn’t notice when I took over night watch duty. All was well until about 4.30am when Lisa burst in the door, she’d been awake, worried about him getting his medicines early the evening before, so decided to give them early again. She was also mindful of the early morning seizure which had led to a day of seizures the previous Friday. The poor little man was in a deep sleep, we really had to prise his teeth open to get them in but out of habit he swallowed and rolled over back to sleep.

Oh the madness of parents worrying over their little boy...

On Tuesday we headed to Temple Street again. Lisa packed a food parcel for the Inchicore Two including a birthday cake, a chocolate one herself and Freddie had baked the evening before. As Conor and Cathy had birthdays coming up it was to be a joint gesture. The trip up went as smoothly as usual. Freddie had only the one pee stop, off a side road somewhere outside of Portlaoise, the rest of the time he spent looking out the window, snoozing or asking where we were, waiting for Dublin to be declared. Fred has this thing about “almost there” and “nearly there”. “Nearly there” is when you’re about half way, “almost there” is when Dublin is in sight. This starts outside of Limerick...He used to occupy himself on long journeys by watching his DVD player but a couple of times he had a seizure mid movie. In our usual madness at trying to prevent seizures, watching DVDs in the car is no longer allowed. Fred doesn’t seem to mind; in fact he doesn’t ask to watch them, content with looking out the window and maybe staging Godzilla battles.

The Godzillas came with us this time; Fred has spoken of them so much in the past that the whole collection, Godzillas, Ultraman, King Kong and all the other monsters were packed in a big bag. Conor was shown them all, one by one and described in great detail, Cathy was out so she missed the introduction. Later, after dinner, plates were cleared and Fred, sitting on Cathy’s lap, laid them all out again like an army on the table. They made quite a sight and I think she was genuinely impressed, the army was still in position when we came down in the morning.

Fred loves his time with Conor and Cathy, it’s such a safe environment and he goes off, leaving his parents on his own, to watch Conor cook or chat with Cathy. It’s a funny feeling for us to not have to watch him all the time, we can even half relax for a few hours, unwind a little, have that extra glass of wine.

After the big dinner, Fred wanted the cake brought in, candles and all. He had it in his head that it was Cathy’s birthday only and presented to her, proud as punch. To top it all off he sat and sang “Happy Birthday” to her, a very special moment, it really was, and all three blew out the candles, each making a wish.

At Temple Street the meeting went well. Cathy Madigan takes Freddie for nearly three hours, breaking for lunch. The lunch break is what Freddie likes the most about Temple Street. It’s an old building and the excellent restaurant is in the basement. “The Kitchen” as Fred calls it and we go down in the lift to get there.  He always has a sandwich but loves the queuing up and sitting at the tables, getting cold water from the font, it’s all part of a life he hasn’t had much access to lately. These little, everyday things mean so much to him at the moment but hopefully the mundane will become just that again, as he gets back into life. Cathy Madigan is determined for him to get there and has been a great strength to us lately. When she heard that Fred’s SNA still hadn’t been approved she was far from happy. Freddie can’t get back to school until he has an SNA to care for him.

After lunch Fred went into the afternoon session. Cathy reckoned he was only up for ¾ of an hour but in the end he was in for nearly two hours. As always Fred confounded the experts and was as bright as a button when we went to get him. Cathy showed us how delayed she believes Fred’s brain is in processing information. It takes a long time for his brain to store something he learns, so long in fact that it takes an age for him to retrieve it when needed. No wonder Lisa is driven daft trying to teach him, he takes words in, recognises them but an hour later can’t tell you what the word is, looking blankly at you when asked. He has a great memory; he can tell you things that happened years ago, it’s just his brain doesn’t allow him to retrieve things in a hurry. This may be due to the medication; they are sedatives after all but probably due to the effect of his frontal lobe defect too.  IF and I stress IF, he gets the surgery hopefully learning won’t become so much of a chore.

The good news Cathy had for us, was that she’d made some calls. She’s not one for standing on ceremony and had banged a few heads together...Freddie had got his SNA. He can start back at school, its only 15 hours a week but that’s three hours a day, enough for any man to back into the rhythm of things. Lisa has a meeting on Monday with the principal and all going well he may be back in uniform Tuesday morning.

This will be a major change in our lives but one we’ve waited and hoped for, for nearly two years now. Of course we’ll be worried sick but Freddie’s education is our focus, worrying will have to be done on our own time.

Fred slept most of the journey home, he didn’t even wake when I stopped for food. It was almost 8.30pm when we got home; a long day but it had been another great trip to Dublin. Tara was staying for a sleepover, Fred was only too happy to have another female to play with and he cuddled up to her to watch some TV.

The rest of our week went as usual. Fred’s home tutor came for two sessions and he did quite well with her, all I could hear from the front room was chatting and laughing...

Fred loves entertaining the ladies.

 

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Posted by John Verling

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