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

30Sep/120

Something Delicious

Usually we visit Freddie’s neurologist as a family even though Ruby only sometimes comes with us. The last visit, which was in August, I travelled on my own. Freddie was in seizure activity and a bit too fragile for the journey. Lisa too was getting fed up with the journey down, the waiting and a meeting that didn’t produce anything or for which there was no need of Freddie being there. So I went as the representative of the Verling family.

Outside the waiting rooms, I sat and waited. When it looked like I’d be waiting for a while, I took a stroll down to see if I could find my friend Brian in his consulting rooms. He wasn’t there but on my way back to the suite where my appointment was I met him. We chatted for a while, joking and commenting about all things under the sun. As we chatted, I saw out of the corner of my eye an old friend coming round the far corner of the long corridor. Mike O’Connor, an old college friend and now a consultant in the CUH. He waved at Brian then, when he spotted me, he stopped in recognition and changed course to see me. After Brian left, Mike and I chatted for a while, catching up on each other’s lives. Mike asked why I was up in the CUH on a Friday afternoon. He got the full story, condensed into a few minutes. Then he asked what hope we had for the future with medicines etc…so he got the full story of the PET scan and how long we’ve being waiting. He was taken aback but confessed that he knew very little of the PET scan department but if I needed any help with anything to call him…anytime.

We parted with me again getting emotional how friends are being friends to me and the unconditional offering of help for Freddie.

At the meeting I was promised that the scan situation would be sorted by the middle of September…

On Monday of this week, Lisa rang in the late afternoon to say Freddie had had a seizure in the bathroom. The little man had gone in feeling ill and Lisa had gone with him, to keep an eye on him. Just as well she did, as she was able to catch him before he cracked his head on the bowl or the sink or the floor. Being the wonderful woman that she is she got him through it and back to the sitting room. The two were now lying out on the couch, Fred in a deep sleep.

After hanging up I was distraught, another week, more of the same, deep into September and still no sign of the PET scan. It felt like we were alone.

I rang Mike immediately.

He answered on the second ring.

“Hi John, you never got back to me on that scan…did you get it?” was the first line out of his mouth, he remembered our talk…

“Sorry to be bothering you Mike” I replied, “but that’s why I’m ringing you.”

I brought him up-to-date, right up to Freddie sleeping on the couch that very afternoon.

“Email me Freddie’s name, address and date of birth and I’ll follow it up in the morning”

I did it immediately.

The next afternoon, Tuesday, I got a text.

“Expect a call within 24 hours regarding scan. Appointment likely Thursday. Regards, Mike.”

I couldn’t believe it.

I read the text over and over again.

Our months of waiting could be coming to an end, eventually. The rush of relief and excitement was like I’d had twelve espressos followed by a dozen Red Bulls. However tempered with previous disappointments and the knowledge of Freddie still knocked out on the couch at home, I came down from my high quickly enough. Telling Lisa, I decided, would wait till everything was confirmed.

However, I burst out with the news when I got home. Though obviously excited and relieved she too knew that nothing was yet in stone.

Wednesday afternoon, just under the 24-hour mark since Mike’s text, my phone rang.

A Cork number….I answered immediately.

After confirming that I was Freddie’s father, he gave me the news that we’d been waiting for…”Freddie’s appointment is set for 8.30 next Tuesday morning.” We went through what would be involved, precautions, fasting etc and handed me over to a lady who gave me more details but it was all a bit of a blur at that stage. My eyes were filling up. The first stage in Freddie’s next step of trying to find a cure was beginning. Thanking them profusely, I hung up and rang Lisa. Oh the joy.

Now I’m angry with myself for not calling Mike sooner but I stupidly trusted the system to deliver. Never again…I should have known the last time with the telemetry when I had to ask Brian to intervene.

That evening I rang Mike to thank him and being the man that he is, he didn’t want any but he did apologise that it had taken so long…He’d gone on a trip down to the PET centre himself that morning to follow up on things, his first visit, and was really impressed by it all.

“Everything span new boy” he joked but he was genuinely impressed by the staff and the equipment. It is all new. Gives us more hope.

Whilst on the phone, Freddie wandered into the kitchen. When I finished chatting with Mike, I spotted my little man, still there, looking around.

“Watchya doing?” I asked…

“Oh nothing” he answered, but I knew what he was up to.

Lisa had baked scones that afternoon and Fred is a martyr for them.

“Just looking for something delicious,” he eventually admitted, after opening tins and looking under cloths.

For the night that was in it, I couldn’t deny him a delicious fresh scone with butter.

Sitting with him demolishing the scone was a perfect end to a great day.

Thank you again Mike.

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23Sep/120

Oh The Frustration

We’ve just had a week of frustrations, whether its just a whole load of frustrations have come at the one time or it’s just been one of those weeks where things have become more obvious I’m just not so sure, probably a bit of both.

The week began with a familiar frustration and one that continued as the week went on. After last week being fairly relaxed, seizure wise, this Monday began with a bang. Freddie rose as normal about 7am and we went downstairs to settle in for the day. As Lisa and Fred got themselves comfortable on the couch I got the breakfast ready. Ruby, after the usual pre-school preparations, came down about 7.45 and all four of us were sitting eating when Fred went over. He was eating his breakfast, apparently at ease with himself when he keeled over. A big seizure, one that we’re used to but still hate seeing him go through. This was a disappointment, as he seemed not to have had a warning, something he has been getting lately. No build-up confusion or dizziness, no extra-tired boy in the morning, just wham straight into the main event. Of course he’s had big seizures lately but they have all been preceded by some warning. This Monday morning one felt like a throwback to a few months ago. The frustration of thinking you were getting ahead but now of being thrown back again is huge. Despite the seizure, Ruby and I had to get on with the day as normal, so by eight o’clock the two of us were in the car, leaving the others behind. Lisa had given Freddie a shot of diazepam so he was fairly zonked when we said goodbye. Kissing the head of my little boy while he’s in a post seizure, drugged-up deep sleep is one thing I just hate doing. Usually when I kiss him and he’s asleep he might turn over or give a grunt of some sort but not when he’s like this. The frustration of maybe again having to face that the drugs aren’t working is huge. Also a major worry. Is he ever going to get a break? By the time I got to Dingle and dropped Ruby at school I was angry, very angry at all this. Ringing home I got Lisa’s hushed tones, as Freddie was still asleep and she didn’t want to disturb him. He eventually woke mid morning and when I called again he answered, sounding dopey but still great to hear his voice. Some little man, everything that is thrown at him but still he just gets up and carries on as if it’s all normal.

On Thursday morning we rose as normal but at the foot of the stairs Fred put his hand to his mouth and said he needed to get sick. As it was twenty minutes after he’d had his medicines, I told him not to, to try fighting it. The thing about the medicines he’s on is that you can’t give them twice but if a dose is missed it can have serious ramifications. There is a window of about fifteen minutes after giving the meds that if the patient gets sick you can safely repeat the dose. After twenty minutes you just cannot repeat the dose, the danger of overdose is too high, especially at the levels Freddie is at with his medicines. In typical Freddie style, we were just at the fifteen minute mark by that stage. Lisa took him into the front room and they laid out, see if the nausea would pass. After a couple of minutes Lisa called, Freddie was vomiting so I rushed in with a bowl. Glancing at the clock on the cooker I saw it was 7.22, just two minutes past the golden twenty-minute mark, typical Freddie. We couldn’t repeat the giving of the medicines and he would have to wing it for the day. If the body hadn’t absorbed the dose he could go into shock with more seizures, but if it had, all would be okay. Sometimes recently, nausea has been a sign that a seizure is on its way but maybe this time he had a bug, it seemed to come on him so suddenly. After settling him again, Lisa cuddled Freddie close to her and he fell asleep. No breakfast for the man. Ruby and I headed off to Dingle, leaving the two behind and for Freddie to hopefully sleep it off.

Illness can be a trigger for epilepsy, it can interfere with medications or cause high temperatures, all sorts of things can go wrong. When I called home about 11am, he’d had a seizure and Lisa was nursing a very sick little man. About midday I got a call from the school to say Ruby was sick and needed to go home too. Turned out she was more tired than anything else so I drove her home for rest. Freddie slept the whole day and didn’t eat or even wake looking for food. He had another small seizure about 4pm, a small frontal lobe one and Lisa gave him a half dose of diazepam to get him through. By the time I got home he was dopey but awake, still not hungry though, a sure sign of illness with our Fred. He got through the evening, only having a half-slice of toast about nine and was soon asleep for the night.

Friday morning I was up earlier than usual and Freddie had come downstairs with me about 7.10. As I had to be out the door by 7.30 all was a bit of a rush and I left breakfast duties to Lisa. Not that any was needed as the little man had a seizure not long after coming downstairs, probably not unexpected after the day he’d had Thursday. Again, Ruby and I were leaving Lisa and Freddie laid out on the couch. By the time I rang home at eleven o’clock he was awake and chatting to me on the phone…some man!

So the frustration of regular seizures was back with a bang.

Another frustration this week is that old chestnut of the PET scan. Still no news, still no update and the only epilepsy nurse inMunster, our only contact with CUH, is on holidays till the first week in October. No news, no nothing. This frustration is beyond description.

Freddie’s education is a major worry of ours and another large source of frustration. He finds it hard to retain things he’s learned or put what he’s learned to use. After reading something clearly in the morning, he may not even recognise the letters in the afternoon. The medicines would have a lot to do with this of course but he needs extra help just to get the stuff into his head in the first place. It takes patience and a lot of skill just to get him to absorb the smallest piece of information. There is the element of disliking all things homework based of course, maybe if the curriculum was about Godzilla or Transformers he’d be fine but I doubt it. It feels as if there is a disconnect between what he takes in and what he can recall. Thence the need to get as much as possible in and to work hard on the recall. Fred has had an SNA at school who has a great understanding of his condition and works hard at getting him up to scratch. This year however the hours allocated to Freddie are being cut, probably to only three per week. The principal at school is taking this as a personal crusade and is fighting for the maximum possible at the moment, which is only five but better than the three on offer. If Freddie could get control of his meds and seizures, he’d soon catch up at school but would need the SNA hours. The frustration of this is terrible, especially for Lisa who tries to make up the slack but finds it so difficult.

Oh the frustration.

During the week Freddie and I were in the kitchen. The kids from across the street were out playing in the evening sun, cycling around, having fun. Freddie was looking out at them, watching them having fun. Watching him watching them was hard, he can’t cycle as  we can’t take the obvious risk and the excitement of playing has been a trigger too many times in the past. At the moment we can’t risk any triggers. The frustration of seeing his childhood being curtailed is so hard to take that I try not to think about it. If Freddie had a normal life he’d be a popular kid no doubt, just like his sister.

So a week of frustrations, all of them we are too used to but we deal with them by keeping them to the back of the head, trying not to think too much about the things we can’t change.

As I write, Fred has curled up on the couch and has fallen into a deep sleep. He looks so beautiful and innocent taking his nap, looking at him just fills me with joy but also with the frustration of knowing what epilepsy has done to his little life.

Always with the frustration….

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16Sep/120

The Little Black Remote

Sunday afternoon in Ballyard and all is quiet. Freddie the man is watching Wolverine while re-enacting the battles with his toys Thor and some ugly mofo I bought at a Jumble Sale at the beginning of Summer. I just asked Fred who the ugly fellow was and he said… “I dunno, maybe he’s a zombie.”  ‘I dunno’, that answer my father hated to get to any question he asked. I suppose it was the indifference he disliked more than the words themselves, if I answered “I don’t know” it might have been more acceptable. One of my friends once answered him “I dunno, Mr Verling”, it was always Mr Verling with my father, never once insisted on by him but understood by all those of my generation who spoke with him. From that day on, he’d retort “I dunno, Mr Verling” any time I used it. Anyway Freddie’s ‘I dunno, maybe he’s a zombie’ made me laugh and remember.

Now he’s put down the toys and is anxiously searching in the blanket for something…”What are you looking for?” I ask, knowing well the answer, which is… “the little black remote,” the one for the media player, as opposed to “the other black remote” which is the one for the TV. The blanket is being searched, he’s pulling back the cushions, looking behind the couch but to no avail. Just as his grandfather used to do all those years ago and probably what I too do as well. “What is it with the Verling men and remote controls?” Lisa often asks when the two of us boys are pulling the front room apart but maybe with a few stronger words thrown in. It’s all in the genes I always remind her, along with all the other figaries she blames on the Verling blood line…putting her in dread of the rest of our lives together…

Now a plaintive, “Please Daddy, can you find the little black remote” comes from Freddie, getting anxious that it is lost forever. This is after he’s just rearranged the furniture so he can see the TV better, the floor lamp has been pushed aside and the TV dragged to the middle of the room. What will his mother say when she comes back from her coffee break with Fiona? Anyway, the remote has been found, under another blanket on the floor and Wolverine can get on with kicking some ass.

Ruby has just texted to ask to be collected from the top of the road. She’s on her way back from the football trip toGalwayand no doubt laden down with bags. The itinerary which read hotel, match, swim, meal, cinema etc had only two hours for shopping and that two hours would have been the focus of my darling daughter’s weekend away. A consequence of the other bloodline…at least Freddie’s obsession with remotes doesn’t cost me any money!

The week gone by has been one of mixed emotions. Still no news on the PET scan and it’s the middle day of the month, we were told Thursday that there would be a meeting on Friday morning of the team involved but we never got an update Friday evening. Maybe the meeting never happened or the good news is in the post, at least we could have been told, more calls will be made tomorrow….

Freddie is look around him again…the little black remote has been misplaced…again.

On Monday morning after getting up Fred had two small frontal lobe seizures, the ones that don’t develop into full seizures and what Freddie calls ‘a big fright.’ As Lisa didn’t want the big one to break through or for him to go through the day falling over she gave him a shot of diazepam, an attempt to keep the epilepsy at bay. As a result, I came down to that dreaded quiet and Freddie asleep on the couch in his mother’s arms. Just what we need on Monday morning, a lovely start to the week. After breakfast and some long goodbyes, Ruby and I set off for Dingle. While all this has become routine now, Ruby and I leaving Lisa behind with Freddie asleep, it still doesn’t lessen the heartbreak of it all. The only consolation for me is that it’s a lot better than last autumn when we’d be leaving them behind in the hospital.

After dropping Ruby at school, I parked up and called home. He was sleeping peacefully, a relief, maybe the meds were controlling things again. Around mid morning he woke, looking to get sick. Its something he quite often feels after seizure activity along with a headache. These things do take it out of him. After a visit to the bathroom and dose of paralink, he continued his snoozing. At lunchtime he woke, hungry as usual and demanded a big breakfast, always a good sign with Freddie. When I called he was digging into a plate of scrambled egg, rashers and toast. Our man has amazing powers of recovery, part of all the amazing things about him.

Our week continued as ever. Freddie was quite good at doing his homework and the other school jobs he has to do. The medicines have given him a bit of a break, allowing his cognitive skills take over for a change, letting him read, write and speak a bit better whilst not giving him the yips. A welcome change there too. He now has speech therapy classes on a Wednesday to help him catch up with the setbacks of the last few years. This week was his best yet, I was told. We still haven’t managed to get him back to school, he’s been too fragile for the journey out to Dingle or so we fear.

Maybe this week…

Lisa has been dealing with his SNA teacher the last few days. Muinteoir Una is determined to get Freddie’s education sorted and to get him the best care available. Once again the love other people are showing to our Fred is breaking our hearts. Lisa’s phone will probably start failing due to moisture damage, the amount of tears she’s shed over the little man this week.

 

On Thursday afternoon Fred started with the yips again and had a couple of ‘frights’ so Lisa took some pre-emptive action with the Diazepam. When Ruby and I got home, he was up eating dinner but still showing signs of being groggy from the activity. He sat in my arms for the rest of the evening, me dozing, as I tend to do as the week develops. About eight o’clock I felt him moving and a clicking on the shelf beside the couch, his glasses being put away for the night. Soon he was fast asleep, the two men of the house dozing while the women did their things. He didn’t wake again and the two of us went off to bed about eleven. About 5.30am he had a frontal lobe seizure, waking me from the light sleep I have on such nights. Another struck ten minutes later and I gave Lisa a shout. We gave him a shot of Diazepam and I went downstairs to try finishing my sleep before going to work. No sooner than I’d dropped off did Freddie appear, looking for breakfast. 7am, time to get up and start the day.

The day went smoothly and so has the weekend so far…Ruby is due home soon and the family will be back together, a precious Sunday evening before the outside world kicks in again tomorrow morning.

Lisa has just come back from her coffee afternoon.

Freddie couldn’t find the little black remote as she came in and was looking for it again….one guess whose family genetics got the blame?

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9Sep/120

The Tooth Fairy Cometh

Freddie and I are lying out on the couch, its raining outside and the two ladies in our lives have gone shopping. Apparently, Ruby needs clothes for a trip toGalwaynext weekend and I thought it was a football tournament she was off to. Fred is playing with a camera, one of the things he loves is taking photos and he’s very good at it. At the same time he’s watching some Spiderman cartoons from the 1980s, another favourite. Now he’s trying to take photos of me doing this, one I can show him in years to come I suppose. All very post-modern.

Earlier I was upstairs, in ‘Daddy’s Office’ as Fred calls my little bolthole on the top floor. Lisa was downstairs in the kitchen, Ruby on the couch relaxing and Fred was in our bedroom on the middle floor, playing with his toys. Leaving Fred on his own is something Lisa and I find difficult to do, something to do with the amount of times we’ve heard him collapse when we’re out of the room. We have to be brave, Freddie has to have a life too. Up on the floor above I had both ears opened, listening to him play and I’m sure Lisa was the same downstairs. He’s been ok today but you never know. After a while, I heard Lisa go into his room…

“Freddie? Where are you?” I stopped and listened, it’s not that big a room…

But all was fine, he was in the shower. A simple, ordinary thing to do but something we can’t let him do on his own. Freddie obviously wanted to be a big boy and do his own washing of the hair. Unfortunately for him, we can’t allow it. Showering can be a trigger, baths can be worse and if he fell over in the shower unattended, the consequences would be high. All was ok though and Lisa helped him finish. It’s such a pity that the little fellow can’t even do these things on his own and he clearly wants to…

The week just gone was a disappointment compared to previous weeks. On Monday, I came down to Lisa in the kitchen getting a cup of tea, Freddie in the front room getting the Connect 4 game out. Over the weekend we’d been teaching him how to play it and he was getting into it. Suddenly I heard the sound of the game falling to the floor and rushed in to find him thrown across the floor. He wasn’t seizing though but as we picked him up you could see from the fearful look in his eyes that something had happened.

We asked what he was doing on the floor.

“I got a big fright” was his answer, sounding somewhat confused.

Getting a ‘fright’ is Fred’s way of describing the mini-seizures he gets, maybe only a few seconds long and usually throw him as if he got an electric shock. This one had thrown him off the couch and shows why at the moment we can’t let him do much on his own.

Lisa cuddled him up to her and I went to make the breakfast. Unfortunately, that awful sound of a full seizure soon followed and we had to take the usual action. Lisa gave him a shot of Diazepam and laid him out for a snooze. It was a fairly mild seizure but we can’t take the chance of a cluster developing. Ruby and I left for Dingle about 8am, leaving the two cuddled up under a blanket. On arrival I called home as normal and all was ok. He’d slept but was now awake looking for breakfast.

A relief.

On Wednesday, Lisa put up his dose of Vimpat. We had put a lot of hope in Vimpat but its taking a lot out of him as he gets used to new doses. By Wednesday evening his speech was affected again, as if he was doing an impression of Don Corelone. It’s heartbreaking to witness but we have to persevere, see if it does eventually improve things. The same old ding dong with these AEDs, months to find a therapeutic dose, months to come off it if it subsequently doesn’t work out.

On Thursday, Lisa had an appointment and had to take Freddie with her. They were driving around the car park for quite a while, trying to find a parking spot. Just as they found it, Freddie began to feel faint and they had to go home. By the time I got home that evening he was fine, a good rest had done the trick but he was still full of twitches. Something is not quite right with all the meds at the moment, the peaceful couple of previous weeks seem a long time ago now. Maybe, I hope, it’s the adjustments to the medicines with the addition of Vimpat but it’s very upsetting nonetheless and only time will tell. Fred put down a peaceful Thursday evening, with us watching him like a hawk.

Friday evening I came home to Freddie laid out on the sofa. Earlier he’d been on the way to the bathroom, with Lisa, when he’d had a fright that threw him to the ground. After he’d taken a rest on the couch a full seizure broke through, knocking him for six. Lisa had looked after him and we settled in to a now far too familiar night of Freddie watching. I’d been looking forward to a Friday night of relaxing in front of the television with the beer I’d bought in Dingle and I should have known better.

Yesterday was another total wipe-out. Fred was full of twitches and jumps. His speech was especially bad. By early afternoon Lisa had had enough and gave him some Diazepam to try settle him, it worked but knocked him out again. He woke not long after Ruby and I got home and put in a fairly normal evening. By about eight the full effects of the Diazepam were taking hold of him and after much persuasion, he went to sleep. He slept the sleep of the just till about 7am and was much the better for it too.

Today he has been better. “Welcome back” I said to him this morning as it was the first time in days he was someway alert. Now, as the day has progressed the twitching and doziness has returned. Again, after much persuasion he’s taking a nap on his mothers lap. Let’s hope he wakes up someway more together.

Earlier in the week, Freddie pulled out a tooth that was loose for a while and bothering him. As he hasn’t lost many teeth, about one a year, the legend of the Tooth Fairy is still alive. He rang me at work to tell me that the Tooth Fairy was coming that night. The excitement of what he was going to buy at ‘the toy store’ was massive. That night we went to bed and he placed the tooth under his pillow. Later I woke up, slid out the tooth and slipped a fiver in. Towards early morning, I heard him check under the pillow. His hand quickly crumpled up the fiver into his fist.

“What’s that?” I asked

“Nothing” he answered, waiting for the morning light to check for certain, probably.

When Lisa came to wake him at 7am he was stretched out, hand still in a tight fist holding the fiver. When he woke fully and saw what he had, he was only delighted, over the moon with what he had…

“Look Daddy, look what I got”, his little face aglow with happiness.

 

Does anyone know an epilepsy fairy?

 

 

 

 

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2Sep/120

Beer, Crisps and Liquorice

The week gone by has been the sort of week I’ve longed for, for a long time, well over a year I suppose. No, my man didn’t make it through the week seizure free but he did put another seven day stretch together, the third in succession. In our current life it’s the small things that matter, the milestones of a normal life. It may be that we won’t see such a week again for a while, let’s hope I’m wrong but at least we saw some semblance of normality.

On Tuesday, my son, Thomas, came over from England for a few days. An eighteen year old young man now and facing into his final year at A-Levels, trying to organise dates weren’t as easy as previous years. Tom had work and family commitments this summer so he wasn’t as free as before. But, over he came and I collected him fromCorkAirportTuesday evening.

Freddie adores his ‘brother Thomas’, as he calls him. All week, nearly every sentence was preceded by ‘my brother Thomas.’….

“My brother Thomas is having the same dinner as me”

“My brother Thomas is in bed”

“My brother Thomas is watching Jaws with me”

So, the running commentary went. When Tom went to Dingle with me and returned in the evening it was to Thomas that Freddie ran, running past me as he went. Thomas will never be adored as much but he handled the fame well and did a great job as the big brother. It hasn’t hit Fred yet that Tom went home this morning but I know the tears will flow at some stage along with the words “I miss my brother Thomas.” He had asked Thomas to stay for “a hundred days” which is forever in Fred’s life.

Last year Tom was over for a week and in that time Fred spent a couple of nights in hospital, started night time seizures and had one nearly every night that Tom was around. This year they were able to cuddle every night and Fred even had a sip of Tom’s glass of beer a couple of nights. They spent days under blankets on the couch watching movies or building tower blocks for Godzilla to destroy. When Tom came down in the morning Freddie was there to greet him, when Fred went off to sleep in the evening Tom was there to wish him a good night. That is the sort of normality that Lisa and I crave. It’s still not the worry free time we would wish for but better than what was passing for normal a few months back.

Another thing that I was able to do this week without worrying myself senseless was stay late in Dingle. Well, late being beyond 8 o’clock in the evening. A great friend of ours was over on a last minute trip from Canterbury. The friend is a collective term for the Swain family. Mark and Lorna with their daughter, Scarlett, arrived on a last minute end of summer trip to Dingle. Always a great pleasure to see them and as my confidence in Fred was up, compared to last year when they were around, I was able to spend some time with them too.

Mark has just written and published a book on his cycle trip from Dun Chaoin to Tokyo, a trip done four years ago with his son Sam. Over a few pints on Tuesday evening Mark was persuaded by Colm Bambury of having a launch on Friday evening. As the two cyclists had stopped in at Curran’s Bar Main Street, for a pint as they left Dingle that day in 2008, it was thought to be the perfect place to launch his book. On Tuesday morning, Mark was sceptical that a launch could be arranged in such a short time…by that night when he called me at 8pm it had been done. Friday night 7pm in Curran’s Bar. The power of pints and more importantly the persuasive power of Colm Bambury had won through. The fact that Mark had to be reminded the next day of that 8pm phone call showed how much powerful, persuading had gone on.

So, the week went on. Ruby started back at school and now I have company again on my daily journey to and from Dingle. All week we came home to an awake Freddie, even if he did push past us to seek out his brother Thomas. This week will be different, now that Thomas has gone, I wonder will he be as happy to see Ruby and I return? During the week, Fred’s speech got quite bad at times. He’d start talking to you and then stop, as if he’d forgotten the words. Which he probably had or at least his brain had forgotten where it had put them. The words he did get out were usually juxtaposed or made no sense to what he was trying to say. It was very upsetting for us to witness and worrying too. Lisa put it down to the Vimpat, of which he is slowly going up to a therapeutic level, an increase in dose every two weeks. A call to his neurologist confirmed that the speech problems may well be down to the Vimpat. As its new on the market all its affects on individuals aren’t known.  She recommended going back down a half dose for a while, that maybe we went up too quickly for Freddie to acclimatise easily. This was a major disappointment as we’ve put a lot of store in Vimpat working, the three seven day breaks we’ve had may be down to it working. He’s still on a fairly low dose so we were hoping for a lot of help as the drug increase progressed. After the chat we were going to go back down on Thursday evening. A backward step…

Then, as always with Freddie, he confounds the experts. Thursday morning his speech improved, not 100% but enough during the day that Lisa decided on not reducing the evening dose. On Friday and now all weekend its back to normal. Still not great, but not as bad as it was earlier in the week. Maybe now we’ll reduce the rate of increase but hopefully be able to stay with Vimpat for a while yet. His speech has improved enough for him to just tell me, that for a picnic tonight he wants to have beer, crisps and liquorice.  In that order and in moderation….

On Friday evening Ruby stayed with me in town, instead of getting the 5pm bus home as planned. Thomas, Ruby, Mark and I had a lovely dinner in theGoat Street café and headed for Curran’s for 7pm. The fact I was relaxed about the evening and not rushing home or anxious to get home was a major improvement. In Curran’s a nice crowd had gathered and a nervous Mark carried it off with aplomb. Colm did an excellent job as MC and a great evening was had by all. The only downside was the fact creamy black pints were flowing and I couldn’t have any as I was driving but I enjoyed the evening. We left about 8.30 and came home to Freddie pushing past Ruby and me to see if Thomas was with us…All was ok. I’d stayed away from home and all was ok. A big change for me. My major upset was that Lisa wasn’t there, it would have been her sort of evening, drinking GnT’s with Siobh and Paula…those days will come around again…

On Saturday morning I came down to silence…that sound I don’t like. After getting up at 7am Fred had had a small seizure on the couch downstairs. That was followed by a big, minute long one, that knocked him out. Seven seizure free days are better than six in my book. At about 10am he woke up and asked for breakfast. A good sign. He ate breakfast. By then his brother Thomas had come down and Fred spent the morning cuddled up to him. In fact, Thomas didn’t even know something had happened till I told him so at lunchtime. The day went smoothly with no further episodes and Fred slept the afternoon away. The only downside was that he was in no humour to sleep at bedtime. We sat up in bed reading and he turned to sleep about 11pm. The next thing I knew he was waking me about midnight because I was snoring…and again about half an hour later…and again a few times later until he drifted off about 2am…leaving me awake and listening to the night.

That was the week that we just put down. Tom left today, I drove him to the airport and we’ll miss him. The Swains left too, tomorrow is Ruby’s first Monday back at school, it feels like the summer is finally behind us and the autumn has begun.

John Boy Walton used to write about peace falling on the little house on the mountain or something like that. Well Lisa has just brought in the beer, crisps and liquorice…

Peace has fallen on the little house in Ballyard.

 

 

 

 

 

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