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

12Jan/140

The Birthday Boy

Fred fell asleep very early yesterday evening. Unusual for him, but he has had a busy week and Jaden was over for the day.  At about 8pm he cuddled up to his Mum on the couch and before we knew it he was sending up zeds, conked to the world. The problems began when he came up to bed with me, at just after midnight, as he woke again. If I wake from a deep sleep I find it very difficult to get back there again and Fred is exactly the same... ain’t genetics a curse, as someone once said. By 1.15am I was wide awake as was Fred beside me, the two of us unable to sleep. Fred as he’d woken earlier, I ‘cos he’d woken me with his restless sighs. Fred was sent up to his mother...

At 3.10am Fred was back in the bedroom door. As I’d been unable to sleep I was up reading and actually half thought that we had a burglar when I heard the gentle footsteps approaching my bedroom door. In came the man...

“What’s happening?” I asked.

“Mummy sent me down, she’s an angry woman,” was Fred’s answer.

In he got beside me with strict instructions to go to sleep...

“All right my Dad,” Fred replied.

By 4am I was reading Fred stories in attempt to get him to off to the land of nod. No luck. In a shameless play of bribery I started telling him of the delicious Sunday breakfast I’d make if he’d only go to sleep...

“Rashers, omelette, toast,” I said.

Fred was silent, maybe it had worked, but then

“And beans?”

“Go to sleep or you’ll only be getting a glass of water.”

“Ok my Dad,”

At 5.10am, Fred rolled over onto his side, he was fast asleep. Eventually.

Now I’m wrecked.

Monday was day 17 in the recent stretch. A good break for us all. Just after lunch Fred was talking to Lisa when a seizure hit. No warning, no confusion, though he had been jittery earlier in the day and was off his food a bit. Luckily the two were sitting on the couch so Fred only had to fall into Lisa’s arms. The rest of the day went as so many have gone before but not as severely. Lisa swiped Fred’s battery with the magnet from time to time and in all he only had five big seizures with a few frontal lobes in between. He roused himself occasionally and compared to other seizure days it wasn’t too bad. He had his fifth in bed about midnight and Lisa gave him a shot of Diazepam with a swipe of the magnet thrown in for good measure. The man slept soundly for the night, waking in the morning someway normal but not ready for school.

Whether all this points to the VNS working we don’t know, it’s far too early to say plus we’ve had good days before. The true sign would be regular long seizure free breaks and seizure days just like Monday past. On Friday we were in Temple Street for the latest increase in the output amps and we discussed the changes with Suzanne. She seemed pleased but was more interested in the amount of seizure free days. 17 days was an improvement on the 13 days previously but that was way down on the 23 from the time before again.  The mantra is still that we are in the early stages; Fred’s output is at .75amps and they are looking at getting to 2amps. The increment stages are set at .25amp each month so were are at least 6 months off where Dr Amre wants us to be.

Time will tell.

This week we celebrated Fred’s birthday. His 11th and the first since we came under Dr Amre’s care. The improvements of the last year, the vast improvements, have all happened since just after Fred’s 10th. Actually we had our first trip to Temple Street this day last year, we went up for a week and so much has happened since. For Lisa and me we weren’t just celebrating Fred’s birthday but also the fact that he’s come so far in the last year.

For one he celebrated his birthday at school. There wasn’t any school last January, something Fred would happily go back to if he could. Denise was delighted when I told her and Fred came home with chocolate in his pocket, a present from Ms O’Se. Ruby asked him what did the kids say and Fred told her that the class sang Happy Birthday to him.  So sweet.

Another difference was Fred and I went to the cinema. Another venture that would have been unheard of last time round. Off we went to the 2.10pm showing of Walking with Dinosaurs. Fred got popcorn and we found our seats in the theatre. We were the only two at the movie; it was like a private showing just for Fred’s birthday. We pushed up the armrest between us and Fred stretched out over me, just like at home. For the next couple of hours we laughed and munched our way through the flick. Afterwards we looked at the posters in the lobby, deciding which movie we’ll see next. I’ll have to arrange another private viewing though, it was so comfortable...

Afterwards we went to the toy shop to get his present. Yet another trip that we wouldn’t have done last year. Fred had money in his pocket, a present from Granddad Jimmy and Rose. He was determined to spend it but Fred is like his Mum, he likes to wander around a shop over and over again before making up his mind. Up one aisle we went, down the next and up the other one before repeating the trip. After about 6 or 7 of these wanderings I put my foot down and made him decide. Off he went to a shelf we hadn’t gone near, to get a green dinosaur, one we’d seen nearly six months previously but Fred hadn’t forgotten. The money from Ashtown went on that and his parents bought him some adventure figures that could battle the dinosaur. As it happens the dinosaur was a Gorgosaurus, one of the stars of the movie we’d just watched. Back home the toys were unpacked and war began. A perfect birthday afternoon.

That evening Lisa and Freddie set about baking his birthday cake, a chocolate one as requested. While they baked I went off to get the ingredients for Fred’s choice of birthday dinner, Creamy Mushroom Pasta, his favourite...by six o’clock all was ready, Ruby was home and we sat down.

The table was set, candles were lit and a big bowl of Creamy Mushroom Pasta took centre stage. Just to add to the indulgence I made some garlic bread. It was wolfed down, Fred as quiet as could be, happily eating his favourite meal. The scent of garlic filled the air mixing with the melting wax like a real trattoria. Gorgeous boy, only gorgeous and all was as relaxed as any boy’s birthday should be.

Once all the pasta and garlic bread was gone the lights were turned off. Lisa placed the cake on the table with eleven candles burning, it looked so perfect. We sang ‘Happy Birthday’ and the look in Fred’s eyes was beautiful, he was loving his birthday. After a big gulp of air Fred blew out all the candles in one go and we set about Lisa’s beautiful cake. No one spoke; we were too busy eating again.

When all was finished Fred kneeled up on his chair, wiped his mouth and looked at the three of us...

“Thank you for the great birthday,” he said.

There wasn’t a dry eye in the house.

A few minutes later he gave me a big hug and in my ear he whispered...

“You make me so happy, you’re great parents.”

I couldn’t answer that one, my throat had closed up and my eyes were pools of tears, I just hugged Fred tighter to me.

On Thursday evening Fred had a second party. This time we were in Conor and Cathy’s house in Dublin, up for Friday’s meeting at Temple Street. As it was Fred’s birthday we got a Chinese takeaway, another of his favourites, especially the prawn crackers, or the white crisps as he calls them. All was eaten with gusto, another great birthday meal.

After the meal more candles were blown out and we had more of Fred’s birthday cake, Lisa had brought it with us. Fred got hugs and kisses from his favourite Dubliners it was a lovely night all over again, the man shy at being the centre of attention but loving it too. He got a present of a Godzilla magazine, which he was reading still over breakfast this morning.

All that happened this week wouldn’t have been possible last year or previous years and for us that is just wonderful.

Now our lovely, wonderful boy is growing up, dealing with his condition but loving his life.

Happy Birthday Freddie.

 

 

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Posted by John Verling

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