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

28Dec/140

Another Year Over

Today is the day we begin to engage with the world again. It’s been a very lazy, quiet, wonderful Christmas and this gap period until New Years Eve is just perfect for doing nothing. I’ve watched The Great Escape and It’s A Wonderful Life while Fred has watched every episode of SpongeBob on Netflix, at least once. Lisa has cried her eyes out At Saving Private Ryan, though the Vanity Fair I bought her yesterday with the Bradley Cooper feature cheered her up. Now Fred is downstairs watching some other old favourites while Lisa and Ruby are off at the gym, burning off that Christmas food which has been on a continuous roll since the 24th.

Thankfully we all slept in until about 8.45am Christmas morning. Fred got a load of presents but this year Santa went easy on the Godzilla toys, as we feel he has to move on a bit to more age appropriate and practical stuff. So the little man got puzzles, DVDs, clothes, a scope for watching wildlife, games and heavy fleece pjs. For a while he was disappointed and went looking under the tree to see where the Godzillas were but he quickly got over it and went back to his collection in the corner. Those pjs were put on and only came off this morning, three days later. Fred wore them everywhere along with some heavy duty socks. In bed, under the blanket watching TV on the couch which he hardly left, at the kitchen table, not once were they taken off, day or night. He did have a shower Stephen’s Day but the pjs went back on. This morning when he came down for breakfast the smell preceded him and into the wash they went, to be ready in time for the big visit tomorrow.

The smile is still on Fred’s face from when Lisa told him this morning that Aunties Claire and Rudi were coming tomorrow. Already he’s planned the visit to the Grand for lunch and the movies they will watch together. Last Sunday his cousin Paulie came on a surprise visit and Fred nearly passed out with excitement, jumping into his lap as soon as Paul drove up to the house. Paul, who had been at a party in Killarney the night before was a bit worse for wear but he indulged the Fred. Again it was a perfect excuse for a visit to The Grand which was lovely on that Sunday afternoon, with pre-Christmas shoppers coming and going. Fred had the Galvin special which was as good as ever with chowder up to the lip of the bowl.

On Monday Lisa went to get Fred’s medicines from the chemist so we’d have a supply for the holidays. For some reason the 200mg tablets of Tegretol which he usually gets, were out of stock and so we had to use the 400mg. He takes three and a half tablets per dose and now that was changing to the bigger pills it worried us. Epilepsy control is very tight; any change in meds can have terrible effects for some reason which is why we can’t change to non-generic cheaper versions. The worst bit is that the 200mg are out of stock until February so we’re trying to ration the existing 200mg ones until the pharmacy can find an alternative source.

On Christmas Eve Fred got very bad confusion just as he went to bed and shook himself to sleep, having a tiny frontal lobe about 1am. On Christmas morning he was fine and got on with the day but he did seem a bit off at times. About 6pm he got the bad confusion again and cuddled up with his mother for a snooze. A seizure broke through about 6.45pm throwing our day upside down. If this was due to the medicine changes we could have been in for a bad night, the last thing we wanted on Christmas Day. Fred slept for another couple of hours but woke feeling fine, a bit hazy but fine. For the rest of the evening he watched DVDs and played with his presents with us constantly watching him.

That was that though. Lisa went back to the 200mg tablets the next morning and we don’t know what we are going to do about a supply when they run out. Tomorrow we’ll be on the phone seeing what can be done, looking for a source somewhere. Also in our heads we’re thinking maybe it was just a coincidence, just one of those unexplained breakthrough seizures that epilepsy likes to throw at us from time to time. Who knows?

What I do know for certain is that Fred will continue on and we’ll bring in the New Year on Wednesday night. Now that 2014 is nearly over we’ll look back and remember all the people who’ve made the year easier for us. My family and Lisa’s who come and visit and make Fred so happy. Blennerville school, without who Fred would have a very contained life. The freedom that their care gives us is beyond describing and the fact Fred loves going to school says it all. Conor and Cathy who, though we haven’t had to lean on their hospitality as much, we know are always there for us; Conor’s visit was a highlight of the year for Fred. Ed and Pamela Galvin who look after us from Maine and Kilmurray; Ed taking me to lunch introduced The Grand to the family and Fred hasn’t looked back since. The staff of Temple Street and Kerry General Hospital who care for Fred and his parents so well. Brian who is always at the end of the phone for me, giving me advice and distracting me with cricket scores.  All our friends who we know are there if we need them, who always ask, who always care and who we know would be here in the drop of a hat.

To all of you thank you and have a Happy New Year.

 

 

 

Share
Filed under: News No Comments
21Dec/140

Waiting For The Big Day

Fred is hanging with the girls. Last night, Ruby and friends went to a gig in Killarney and two of them stayed over. Actually when we arrived back at ten past midnight Fred was in his pjs at the top of the stairs to welcome them home. Such had been the expectation that he hadn’t been able to sleep but he quickly drifted off once we got into bed. Now this morning he had breakfast with them and afterwards the four cuddled up under a blanket to watch a movie, Fred in between the two visitors. Christmas has truly arrived for the little man; all that waiting has paid off eventually.

All week he’s been counting down the days. Finally Fred has got it into his head that it’s a matter of days now and all he has to do is sit it out. Each morning we mark off the calendar and another door is opened on the Action Hero Advent one. Lisa and I have been counting the days as well, both of us aware that if Fred went through a good spell seizure free then that run could be broken on Christmas day, the last day you’d want it to happen.

On Wednesday Fred came out from school looking very tired and telling me he didn’t feel well. We drove home and he was twitching badly in the front seat. Luckily we got home and onto the couch without incident. He slept if off and was fine by the time Lisa got home at 5pm. Ruby was off ice skating in Cork so the two of us relaxed and it seemed to do the job.  That night Fred was saying he didn’t want to go back to school, he was too tired and it was time for holidays. For every kid the last day at school before Christmas holidays can be the best part of the year and I didn’t want Fred to miss it. So I told him there would be a party and he reluctantly agreed. I dropped him off in his civvies, no uniform day at school, and in he went anticipating a big day.

The excitement of national school kids when breaking up for Christmas is wonderful. Out they all come with whatever they made, decorations, Yule logs, cards and presents, proudly showing them off to the waiting parents. Fred was no different. He came out beaming having had a great day of eating and watching movies, possibly his best yet in education.

“I had a great time Dad,” he said, selection box of sweets in his hand, sitting up in the seat full of excitement.

“What happened?”

“Oh we had a party and did toy telling.”

“What’s toy telling?” I asked.

“Oh you know when you have to tell the class about your favourite toys.”

“Did you do it?”

“Yes,” he beamed “I stood up and told the whole class about Godzilla, Gigan, Mecha-Godzilla, King Gidorah and all the monsters.”

“Wow.”

“Yes and when I was finished all my friends clapped and Ms O’Connor said I was brilliant.”

The tears in my eyes made driving dangerous, I was so pleased for him. I could only imagine the detail and the actions played out, every monster named and described. For Fred it would be a big thing to stand up and tell the whole class but it shows how comfortable he has become at Blennerville. Merry Christmas to them all.

At home he proudly showed Mummy his present and the selection box. The wrapped present went under the tree and Lisa opened the sweets. Then Fred went to his bag and pulled out the prize he won in the school raffle, a radio.

“Now I’ve got my own radio,” he declared, opening the box with a scissors.

I got some batteries and Fred turned it on. For the rest of the week the radio has gone everywhere with him and is beside the bed at night. He’s found some music channels and is getting used to its workings. His first radio and he loves it.

That evening he fell asleep while watching a movie and had a seizure about an hour later. At least we thought, it may now be out of the way for Christmas. Lisa and I did the routine, made him comfortable, settling in for the evening. Thankfully he only had the one, as per the last two events and he woke hungry about eight o’clock. The rest of the evening went peacefully and the two of us cuddled up in bed about 11pm, Fred sleeping the night through, me watching him, waiting for something to happen.

On Friday afternoon Ruby came home with the girls and Fred roused himself from the couch to go dance in the kitchen to the music they were playing. That evening he came with me as we drove over to the off licence to get a beer, twice going around town to look at the Christmas lights. Oddly enough he had another seizure about 7am Saturday morning but even that one he slept off and still came down for breakfast at about 11am. All in all not a bad way to see a seizure event through and hopefully that’s it for a few days.

Now we’re on the full countdown to the big day and our house is looking very seasonal thanks to Lisa.

Just before I came upstairs I checked tha20141216_114248t Fred was ok. Cosy under the blanket, cuddled to the two girls but yet had a sour look on his face...

“What’s wrong?” I asked.

“I hate this movie, it’s boring,” he said.

Another lesson Fred will have to learn, there are times when you have to like those girly movies...

Plenty of time for that though, for now we’ll enjoy Christmas and see what Santa brings to those who’ve been nice...Happy Christmas.

20141216_114224

Share
Filed under: News No Comments
14Dec/140

Almost There

Today is the 14th, less than two weeks now to the big day and Fred can’t wait. Since the beginning of the month we’ve been counting down the days; marking an X on the calendar for each passing date and tearing off the doors on the Advent one. As usual we’ve been dealing with Fred’s ‘almost there’ as opposed to his ‘nearly there.’ For Fred almost there is far preferable to nearly there, for whatever reason we do not know, but it’s just one of his figaries. Now we are on day 14 he can see light at the end of the tunnel but still each morning is greeted by the same big sigh and the question that has bothered kids for generations:

“I’m fed up with this waiting, why is Christmas taking so long?”

This week at school Fred had choir practice for the Christmas caroling session in the church. As usual for Fred the excitement was in the bus trip over, not the actual singing, which with the continual practicing would get anyone down. On Friday when I went to collect him he told me he was sick of the waiting in the church and had got too tired. Too tired is one of Fred’s phrases for bored. Can’t say I blame him either; it takes a certain level of dedication to put in the hours at getting a carol recital just right, no doubt Caruso said the same at times.

On the way home on Thursday I asked him where he went on the bus…

“Oh you know.”

“No, I don’t,” I replied.

“The big place, where the people get married,” he said.

“The church?” I asked.

“Yes, that place.”

The actual recital is on Tuesday night, whether Fred will want to go and wait around for a couple of hours is unlikely, especially when he could be at home cuddled up under a blanket.

Yesterday we had a visit from Fred’s Aunty Ella and his cousin Ben. As always, Fred loves visitors and was looking forward to it all morning. When the visitors arrived with presents for him and Ruby he was doubly delighted; though not so happy when he realized that they were Christmas presents and there was more waiting involved until he could open them. All evening he had his present in front of him, looking at it, wishing he could open it, wishing for Christmas to come, again. More waiting; no wonder he’s sick and tired of all the waiting.

Ben was introduced to Godzilla and the other characters from Fred’s movies. For Fred it was great to have someone else to explain the plots and subplots and Ben showed interest which was great for Fred. The two of them, in typical Fred style, were wrapped up in blankets, keeping warm while Godzilla saved the world. Whether Ben will start collecting the action figures is another thing though.

After lunch we went to get the Christmas tree. This is something Fred has been asking about since the beginning of the month. Now the time had eventually arrived and he was delighted. Out to the car he went, holding Ben’s hand and not a look to his Daddy or Mother, very fickle these kids.

At the Christmas tree market Fred was overawed with all the trees, the different shapes and sizes, lots of holly and all the people. It had a real taste of Christmas about it and for us all, Fred most of all, it marked the beginning of Christmas. He chose the tree with his mother, Ella bought some berried holly and Fred stuck close the Ben throughout. Towards the end of the buying I think he got a bit overcome with all the bustle and went back to the car, again holding Ben’s hand. The tree was put aside for collection today and the two of us will go up later after making room in the car.

When Ruby comes home we can decorate the tree.

Then Christmas will have begun.

 

 

Share
Filed under: News No Comments
7Dec/140

All That Waiting

Fred is sitting up in a sun drenched bed playing with an old tool box of mine, looking very industrious as he takes out the screwdrivers testing them against each other. Beside him his mother is lapping up the winter rays of this early morning sun, reading her kindle and enjoying the peace. After a tough couple of days socializing in Dublin she needs the rest and Fred needs to be close to his Mum. They may fight like cats and dogs but he misses her when she goes away, as Lisa does her precious Fred.

This is the end of what has been a full week. Fred had bad confusion on Tuesday night and we kept him home from school Wednesday morning. It was day twenty and we thought it better to be safe than sorry. He slept a lot of the morning, though he came on the journey to drop Lisa to work. In the early afternoon he fell asleep, had a couple of frontal lobes before a full seizure broke through about 4pm. All was fine; he cuddled into me and was in a deep sleep by the time Lisa came home about 5.15pm. He woke about 7pm, had some dinner and came to bed with me about 10pm. All evening Lisa and I were watching him, waiting for the second seizure but none happened. When he was slipping off to sleep I fully expected its arrival but no, he slept soundly. All day Thursday I waited for it but no sign and Fred was dispatched back to school Friday morning, much to his displeasure. He had a great time though, despite his misgivings and the weekend arrived without a hitch.

That seems to be the way with Fred and his epilepsy. When you least expect it he gets an awful kicking and the times you know something is going to happen he gets away lightly. Each time, no matter what the severity, Fred will bounce back, come through smiling and get on with his life. Though he has been tired and has slept a lot it was great to get him back at school on Friday, finishing the week as f nothing had happened.

On Sunday last Fred had asked to go to the Grand Hotel for lunch. The two of us had been there before and he wanted to show the ladies of the house its splendour. We parked outside and Fred led the way in, pushing open the well polished front doors and through to the bar. Though it was packed we found two tables free and pushed them both together. Fred in his element waited for the waitress to come back after she gave us the menus. There really wasn’t a need for the menu as Fred knew exactly what he wanted...

“Ah excuse me,” he said when she came back with her order pad.

The waitress readied her pencil.

“I’ll have a ham, lettuce and mayonnaise sandwich on white bread, please,” not forgetting his manners when ordering. For a drink he had a hot chocolate.

We ate our fill, drank our drinks and had a lovely old time of it. Afterwards the ladies left us to finish up and pay while they went to browse with the other Sunday shoppers. Fred and I decided not to be outdone and went over to Eason’s for a peek at the magazines and to the trade-in store that sells all things electrical. He loves looking at the DVDs in there, hiding the ones he doesn’t already have when I tell him we’re not buying. The idea is to come back another time and buy up the hidden ones, that time when he eventually wears me down with his pestering. All week he asked me if we were going to the “phone shop” as he called it, getting the same answer each time...”not today.” This morning he announced that we were going back this afternoon, another battle looms.

Waiting isn’t one of Fred’s favourite occupations; usually he’ll huff and sigh until either one of us gives in or threatens the end of the world if he doesn’t stop asking. So it is with Christmas. Fred just can’t get over the amount of days he has to wait or the length of time it will take for Santa to arrive. Every morning we mark the days on the calendar, at least that way he has something quantifiable to see but the waiting is still beyond his ken...

“I’m sick of all this waiting,” he said one day, followed by, “why is Santa taking so long? Hasn’t he made my presents already?”

Can’t argue with those questions really but waiting for Christmas is the highlight of Christmas, especially as a kid. When we collected Ruby from school Tuesday afternoon we gave her friend Sarah a lift home too. Fred is mad about Sarah and was delighted to see her get into the car. On top of seeing her she was also carrying her Christmas wreaths and candles which she’s selling to parents, teachers and friends. Seeing all the Christmas stuff was doubly exciting and Fred couldn’t get over Sarah having it all. If she wasn’t the best thing since sliced bread already she certainly was for him on Tuesday evening. Christmas for Fred seemed at little bit more real as if it had arrived or at least wasn’t that far away anymore.

That morning though Christmas had been the last thing on his mind. Coming down the stairs for breakfast Fred still had his eyes half-closed and knocked over one of his mother’s glass cabinets in the hallway. Lisa in the kitchen, rushed out to see what the commotion was and once she saw Fred was ok but her cabinet was on its face the fuck sakes began. As I lifted it the door fell off; though the glass wasn’t broken the hinges had cracked the wood. Fred tried to make it up to his mother but it was one of those events he was better off just leaving go, there wasn’t any coming back from that happening, not immediately. No amount of saying ‘but I love you’ was going to save him, not on that one.

Luckily I was able to fix it, amazing what some superglue from Small Benner’s the Mall Tralee will achieve in a few minutes. Though I did put the hinges on the wrong way around at first, all came together eventually and the cabinet was back in situ by early evening.

Now it is Sunday lunchtime. The low winter sun is still shining and Fred wants a trip to the beach. Not a bad way to finish the first weekend in December with Christmas less than twenty days away.

All that waiting will soon come to an end for Fred.

Santa better not let him down.

 

 

Share
Filed under: News No Comments