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

29Jul/120

Cheesecake and Buzz Lightyear

It’s a Sunday afternoon in Ballyard. Lisa has gone out on her own, something very important for her, rarely done. She needs to get away from it all, get a bit of a break from the constant Freddie watching. More importantly almost, to me, is for Lisa to come back to a conscious Fred. Too often in the past she’s gone out shopping or whatever only for Fred to be hit by a seizure and to be laid out on the couch when she comes back. As a result, she doesn’t go out as often as she should or if she does she can’t relax, worried about her little man at home. Now, with some of the improvements of the last few weeks she can feel a bit more relaxed about going out, even if she won’t go further than ten minutes away in case she gets THAT call from me. As she left today, looking gorgeous, I said, “See you in the A&E!” which at least she laughed at…hope my attempt at humour doesn’t backfire.

Yesterday Lisa remarked that I always say in my piece that she’s “under the blanket reading her kindle” and that people reading will think that’s all she does. Well anyone who knows us will know that Lisa does everything in this house, spends her days worrying about Freddie and caring for him when needed, while at the same time making a happy home for us all. If she gets time to read her kindle, its time well deserved and the reading has helped keep her sane through these last few months. Sure there may be times when the cabin fever overtakes her and she uses language that no lady should ever hear, not to mind ever speak, but the fact she has kept sane these last few months is a testament to the woman I love. Even now as she’s out about in Tralee on her own she’s decided to go visit the mother of a friend who’s laid up in hospital. What more can I say…

It’s been the usual busy week for us all. Ruby went off toWaterfordlast weekend and is showing no signs of coming home. It’s great that she has a second home to go to, to be loved and looked after by her Aunties Clare and Rudi. The fact that she has little to say on the phone and is looking to stay another week is great, she’s getting a holiday from all this. The house however is very quiet without her. Since she’s been on her school holidays she’s colonised the place, had friends over and brought life to our little spot in Ballyard. Sure, she’s been grumpy, fought with her Mum but most of the time she lightens up the house and the place is just too quiet now that she’s gone. This morning Freddie was in the kitchen with me, helping me get breakfast when he climbed up on the shelf beside me. There was a photo of Ruby by the window, an old one of her rowing a currach, smiling up at the camera. Fred studied it, looking at his sister with those sad eyes of his…

“I miss my sister” he said, tears in his eyes “I wish she was home...”

In order to cheer him up I made his dream breakfast, one we’d talked about that morning in bed and he ate it with gusto. The poor little man should be down inWaterfordtoo, running about with his cousins, having a great summer instead of being cooped up here waiting for a seizure or two to hit him.

So it was this week. On Monday, after a Sunday of sleeping and fighting the confusion in his head, a seizure broke through. It was about 4.30pm, after another long snooze and it burst out of him as he was lying in his mother’s arms. Lisa said it was a real angry one, not a big one, the usual minute long event, but it was with a vengeance that it broke through. Freddie’s head really shook and a deep roar came from his lungs as the seizure that had been denied over the weekend expressed itself. If there is any good to come out of it, maybe again it’s a sign that the Tegretol is doing some sort of a job and almost holding it all in. Lisa gave him the Diazepam as usual and he was in a deep sleep by the time I got home at 6.30pm. He slept for a while and eventually woke about 8.30pm, hungry and confused. After a bowl of rice with Soya sauce and olive oil, he watched a bit of a DVD before falling back asleep. The diazepam and seizure combine to leave him very sleepy and after coming to bed with me at 11.00, he slept all night. As is our usual routine, Lisa came down to wake him at 6am, in case a morning after seizure struck and took him downstairs to snooze until breakfast time. When I came down at 7.30, he was awake, watching a movie and looked as if he didn’t have a care in the world, which in fairness is how anyone would want their kid to be… The starving little man devoured his breakfast and our day began. Throughout the day, as is now our normal routine, I rang home for updates and all was fine, he slept through most of it. The downside of him sleeping all day was that he wasn’t tired by the time we went to bed in the evening…by 1am he still hadn’t caught the night train and I drifted off. A few minutes later Freddie woke me up…”stop snoring Dad, I’m trying to sleep!” So I sat up and let him cuddle up to me and within minutes he was asleep, sending up zeds as my Dad used to say.

Wednesday was my birthday and Freddie had it all planned. There was going to be a cake, candles, balloons and singing “happy birthday”.  After I left for work, Lisa and Fred went off to get the ingredients for the New York Cheesecake recipe she’d promised me. They started the baking in the early afternoon so as to be ready for my return in the early evening. After work, still in Dingle, I got some cheese and crackers from the “Little Cheese Shop”. The plan was for a party, so I got a nice bottle of beer and some crisps for a the picnic in front of the TV later on, Freddie’s favourite. The big party Freddie had arranged for me was coming together.

Coming in the door at 6.30 it was all too quiet. On the couch Freddie was lying out in a deep sleep, Lisa looked at me in that rueful way we’re all too used to now. During the baking, Freddie had gone in to sit down and within a couple if minutes Lisa heard that horrible sound of a seizure coming on. She couldn’t believe it, didn’t want to believe it and rushed in to take care of the man. My birthday was ruined, at least the plans Freddie had made for me were ruined, at my age birthdays are no big thing but Daddy’s birthday was a big thing for Fred. He wanted me to have a great one, with cake and everything. On the mantelpiece was stuck a painting Freddie had done for me of balloons, celebratory ones he’d done for the birthday party. It may have been the excitement of it all, it is one of his triggers, but epilepsy just can’t leave this man alone.

In the kitchen was the cheesecake, despite everything Lisa had made it for me…
After dinner, Freddie woke up and had some dinner for himself. Lisa got me a slice of the cheesecake, with cream and strawberries. It was only delicious and at least Freddie got to see me enjoying it, even if he was doped to the hilt. After a sup of my beer and a couple of crisps, he snuggled into his mother and slept the night away…

My sweet boy wanted me to have a great birthday; all I wanted was for him to be seizure free for a few days.

If I had but one birthday wish…

Now it’s Sunday evening, four days seizure free and we’re cuddled up watching Toy Story 2. His mother still hasn’t come back but Buzz Lightyear is keeping us all safe.

To infinity and beyond….

 

 

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22Jul/120

To Mummy

Now this is a completely different post than my usual ones. As I’ve been busy doing a few other things I’m only getting to sit down and write this at the much later time of 5.30pm. Freddie is under his blanket, lying out on his mother, waiting for a seizure to hit. Earlier this afternoon he’d begun to feel confused, the sign these days that something is on its way and he fell asleep, again in his mothers arms. After a while, I went upstairs to finish what I was doing, or at least continue it, leaving Lisa under the blanket caring for Freddie and reading her kindle. About an hour later, my phone rang. Freddie was awake, nothing had happened and wanted the special lunch I’d made him yesterday. The one we weren’t supposed to tell Mummy about…

Yesterday had been our first day alone in a long time. Indeed Lisa and Ruby had headed off to Waterford on Friday night leaving the men to fend for ourselves. This was Lisa’s first night away from Freddie, under normal circumstances, in at least two years, there have been nights where I’ve stayed in the hospital but as I said normal circumstances…and so, we waved them off about 7 O’clock Friday evening and settled down for a boy’s night in. After watching Mr Bean’s Holiday and some Maggie and the Ferocious Beast, it was time for sleeping. Freddie fell off into a deep sleep quickly enough and I watched an episode of Dexter. He too, was looking after his son on his own but I wasn’t plotting the death of a mass murderer, at least not on Friday night…

Fred slept a peaceful night and we woke about seven Saturday morning. Downstairs I got him his medicines while Freddie made a bed for us on the couch.  A nice cosy bed of blankets and cushions too, so cosy that within minutes I was dozing again. Freddie woke me about 9.30am saying he was hungry and wanted a big breakfast. Thus, our day went on. It was my aim to keep him seizure free till at least Lisa came home that evening, I didn’t want to make that call or see the disappointed look on her face if she came to find him unconscious on the couch. We watched TV, I read, we ate lunch. We snacked, we played games, we watched Godzilla battles on YouTube and at four, I gave him the rest of his medicines. By the time, Lisa came home at 6.30 I was preparing dinner and the little man was sitting up, all ok, waiting for her. When she drove up, he ran out to greet her, a scene I’d been wishing for all day.

For the first time in two years, Lisa had left to come back to a safe and sound Freddie.

Mission accomplished.

Saturday was day four since Freddie’s last seizure activity. On Monday I’d come home to find him laid out on the couch recovering from a second seizure. After all the hope of last week’s post he was now having two big seizures in the one day, something that hadn’t happened in a couple of months. Lisa had already given him the Diazepam after the first one at 5pm so we couldn’t give another one so soon afterwards. If this continued it would be hospital again, a place not visited since mid-May. But thankfully he slept through after that. Lisa and I sat with him all night, Ruby upstairs with Hannah and Ella was immune from it all, thankfully. At about midnight we went off to bed, Fred cuddled up to me as if nothing was wrong in the world and I read for a while. At about 5am he had a small frontal lobe seizure, lasting about five seconds and I woke immediately or maybe I was only dozing, on alert. A couple of minutes later another one hit and I called Lisa. She came up with the Diazepam, it had been over eight hours since his last dose, so he could have more. She gave him a dose and Freddie went on sleeping till about 8.30am. The three of us got up and went down   for breakfast. The poor man was starving, he’d missed dinner the night before, a very unusual event and so he devoured the plate of rasher, eggs and toast I put in front of him.

During the day I rang home to check on him. He’d slept on and off with no more side effects, it looked like the seizures were behind him for another while. We could start counting seizure free days again. Seizure free days are counted by us in twenty-four intervals from his last seizure. Today is day five, five full days since those small ones Tuesday morning. The first five day interval in a while and it means that we’re expecting action anytime soon. That’s why when Freddie felt confused this afternoon it came as little surprise to Lisa and me.

After I came down to make his special lunch, wraps with Quorn sausages and coleslaw, I went back up to finish my work. Quorn sausages by the way are known as ‘Daddy’s Sausages’ by Freddie, another one of his phrases. He settled into his lunch and seemingly over his confusion attack. So then when I came back at 5.30 to see he was feeling confused again it was a real disappointment, not a surprise, as epilepsy doesn’t leave him alone, just a let down.

However after forty minutes of dozing, waking once to go to the toilet, he put his head up to say he was fine ok…”it’s gone now,” he announced. So while I’ve been writing he’s put the confusion behind him and is now sitting up watching Mr Bean, again, as if nothing had happened and I suppose nothing did.

This wonderful boy of mine just takes life as it comes. He feels the confusion and lies down, waiting for it to attack or pass over. When it’s finished with him he carries on as if nothing had ever happened. His strength really amazes me.

He’s also full of love...

On Friday evening, after Lisa had left wondering how she could leave her little man, we had a little picnic in the front room. Just some cheese and crackers, nothing special. Freddie was drinking a smoothie and me just a plain glass of water.

He turned to me and held the smoothie up in a toast:

“To Mummy” he said…

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15Jul/120

The Fainting Confusion

Freddie is downstairs in our bedroom, sulking after fighting with his mother. My office is on the top floor and I could hear the screaming from up here. Lisa, under her blanket, reading her Kindle, had been stood on by Freddie getting up. Her long slender legs were no match for his well-fed frame and so she screamed holy blue murder but in a language usually only heard in a barrack room on payday. So the little man has taken refuge under the blanket with blue squares, as he calls our duvet, probably waiting for me to come down and tell how he’s been injured by Mom. “I don’t want her anymore, I hate her, she’s fired” are all terms he uses in this situation before making up and resuming his place next to his darling Mummy as if nothing ever happened. Usually I offer to go find a new Mum but even in his most angry of phases, he won’t agree to that….

 

This week has seen a slight improvement in the overall scheme of his epilepsy. When you live through it, you don’t see it all as an improvement but when reconsidered on a Sunday morning you see the chinks of light. On Monday afternoon, Lisa and Freddie were off aroundTraleeshopping, in and out of shops, picking up the essentials. Freddie wanted to go into one shop but it was busy and Lisa double parked outside and ran in. They had rowed, Freddie wanted to go but it wasn’t practical and Lisa won out. Afterwards Freddie told me the ‘fainting confusion’ started when he was in the car waiting for Mum. Fainting confusion is Fred’s term for feeling the onset of seizures, a new development and a welcome one. At least now, we have some indication that seizures are on their way, he mightn’t always get these signs but anything is better than nothing at all. Nothing happened in the car but Lisa knew when she came back out that not all was well, he looked tired and he told Mummy he was feeling confused. Lisa, taking no chances headed straight home and within minutes they were under the blanket in the front room. Tiredness overtakes him very quickly when in seizure onset mode and he was soon asleep. Lisa rang to tell me what was happening. As usual being away in Dingle feels so isolating.

 

To make things worse Ruby had football training that evening so it would be almost eight o’clock before we’d get home. After driving Ruby and Ali to training I went and did some shopping, getting stuff Lisa had been unable to get. In this situation I don’t call home, I reckon if Lisa needs to she’ll call me and I try to keep myself occupied, not make it more of a drama than needed. So with my jobs done and Ruby collected we headed off home, knowing that surely things must be ok. My darling daughter had been on a sleepover in Hannah’s the night before and soon fell asleep, before Annascaul even. By eight o’clock we were home and greeted at the door by Freddie, up and about as if nothing had happened. Lisa explained that all that had developed was a five-second, frontal lobe seizure; his arm lifted as if a big one was about to break through but nothing followed… All in all he’d then slept for about three hours. This was new, he’d felt it come on but only a tiny one broke through. In the kitchen, looking up at me through his glasses, Freddie explained how Mummy had left him in the car and then the ‘fainting confusion’ started. Poor Mummy never cops a break.

 

Monday night he wasn’t for sleeping. We went to bed about eleven but Freddie hadn’t a notion of even closing his eyes. We read a few stories, The Smartest Giant in Town, Farmer Duck, but no sign of the eyes closing.  Eventually about 12.45am, he drifted off into a sleep, funnily enough quite quickly into a deep one. We’ve spent so much time observing his sleep over the last few years that we are now experts of what stage of sleep he’s at. About 1.20 he gave a loud gasp and the arm shot up, but that was all, nothing developed, another short frontal lobe seizure. The same happened about 1.45am, again I jumped up expecting the worst but nothing developed. Freddie slept the night through as if nothing had happened and when Lisa came down to wake us in the morning all was ok. That afternoon he felt tired again, no fainting confusion this time, he just needed the rest so he slept in his mothers arms for a couple of hours.

 

Why this is happening and if it’s significant, we don’t yet know. It’s too soon to tell and we know from experience never to second-guess epilepsy. If it’s a new pattern or not, who knows? Is the Tegretol gaining more ground and are the warning signs going to continue, thus giving us more time to fight off big seizures.  Again, who knows? The only solace we can take from the early week just gone by, is that it was better than other times.

 

On Friday morning, Fred and I rose before the rest of the house. We were downstairs preparing breakfast, when he said he needed the bathroom, so off he went. Lisa came down and went to say hello to him but came back into the kitchen with a confused looking boy. The ‘fainting confusion’ was back he said. The two went off into the front room and settled under a blanket. Immediately he fell asleep and I went back to stop the breakfast preparations. Within a couple of minutes that horrible sound came from the front room, a seizure had broken through. Luckily he’d felt it coming on again and was in his mother’s arms. It lasted maybe a minute or so but still, it was a disappointment that one had happened. Lisa made him comfortable and gave a shot of Diazepam to stop more developing; we still don’t have the courage not to give it. As Lisa gave him the drug, it dawned on me that it was just over the week since he’d last had a shot of it. Better than every three days, as has been the norm recently. Another new development? Far, far too soon to tell or even contemplate.  The developments of the early part of the week still haven’t been proven either, after all another one broke through. But then, after that seizure Friday morning he didn’t have any aftershocks. He woke for brunch, demolished a hearty meal and slept again for most of the afternoon. Obviously, the Diazepam would have been a factor here but the fact he slept so soundly for so long was another good sign.

 

Through all this, Freddie has been more alert than previous weeks. The improvements in concentration and memory have been enormous. His home tutor, Sine, has been coming over in the mornings and he’s responding well to the work she’s doing with him. These classes take place in “Daddy’s Office” at the top of the house and Lisa is banished back downstairs. Unfortunately, she spends the hour dreading a call from upstairs, it’s what we’re programmed to expect, but so far so good. This morning he was up with me and sat at his seat with the pen he’d borrowed from my desk. After a while he produced a line of words he’d copied and numbers too. He was so proud showing them to me but I was even prouder reading them. Freddie doing homework without prompting…

 

Last night as he went off to sleep in my arms I asked him what he wanted for breakfast. He listed off a long line of foods, sausages, chips, rashers, black pudding, toast and honey eggs. Honey eggs, Fred’s name for fried eggs. This morning he demolished a plate of toast, rasher and a honey egg, but not before the honey egg was sent back for being too runny…

 

Fred might love his food but he won’t eat just anything!

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8Jul/120

Shepherds Pie

Another Sunday morning in Ballyard, a week gone by and its still raining. It did stop occasionally during the week, brilliant beautiful sunshine, blue skies, t-shirts, stunning sunsets, sun burnt kids followed by thunderstorms, all in all a traditional Irish summer. As I was working for most of the time and thus inside, the weather was somewhat irrelevant but still nice to know some good stuff was out there. It’s amazing how, once we’ve had a couple of hours of sunshine, the bad weather is immediately forgotten, must be some inherent gene that makes the Irish climate bearable. If we didn’t have it we’d be all off our rockers by now,Irelandone gigantic funny farm of pale skinned people muttering about the mist.

 

Once again, the Transformers are saving our planet from the Decepticons. Freddie asked for the old Transformers recently and started singing the theme tune from the series so I’d know which one….

 

With his hands doing the actions, he sang:

 

“The Transformers
More than meets the eye

The Transformers
Robots in disguise”

 

Or, at least words to that effect and every series sample episode I brought home just wasn’t the right one. “Oh Dad, you got the wrong one…again” and he’d sing the tune…again. As far as I could make out the theme tune was the right one. Well this week I hit the jackpot, he wasn’t so convinced by the opening credits but loved the cartoon when it started. The look on his face made all my searching worthwhile and his hasn’t stopped watching the complete 1984 series since. The voiceover at the start, in an attempt to sound futuristic, says “Its 2005 and the wars are over…” Little did they know that my little man would still be watching them in 2012…

 

Elsewhere in the house, we’re just emerging from a typical lazy Sunday morning. Ruby has arrived down, laptop in hand, to take up residence on the other couch. A trip to Hannah’s has been planned but she’s awaiting the all ok from Baile Eanaigh, much to her annoyance. She’ll be even more annoyed when she finds out that she’ll be going by bus. Lisa, after a morning under the blanket reading her Kindle, is sweeping the floors and discussing wrinkles with Ruby. Apparently she has a wrinkly face, news to me after 17 years….

 

Fred is demolishing a bowl of Shepherds Pie, it’s a current favourite and when he found last night’s leftovers in the fridge, he knew what he wanted for lunch. He did want it there and then as a snack but took the promise of a bowl for lunch instead, very reluctantly though. For him now though it’s been worth it, with a nice lunch and watching his Transformers, cuddled up with Dad on the couch. The pleasure is mutual, even though I haven’t been brought lunch on a tray.

 

The week gone by has much the same as other weeks. We’ve still haven’t any concrete news on his PET scan, even though Lisa has been burning up the lines between here and CUH. There was a meeting on Friday morning and they still haven’t calibrated the new PET scanner for children. This can’t be done till a certain amount of adults are scanned or something like that. The assurance is that as soon as it’s ready for Fred he’ll be called, no appointment, just a phone call as he’s top of the list. We’re not holding our breath but Lisa was told on Friday that it will be this month. We’ll have to see but all the advantages of keeping this in CUH are fast running thin. The flip side is that if we go elsewhere we’ll just be a number on a list, probably way down that list, without the personal connections we have inCork. If the HSE wasn’t so under funded and mis-managed none of this would be a problem…

 

In line with other weeks Freddie is beginning to feel tired and a bit disorientated when he feels a seizure coming on. It’s a vast improvement on him suddenly keeling over but the downside is that he’s only getting a three or four day break between attacks. The withdrawal of the Frisium isn’t helping. It’s taking weeks as we’re only cutting 2.5grms every 21 days but its such a strong one that that’s the recommended format. He twitches a lot now, especially when sitting still or concentrating. His little fingers or his hands will jerk uncontrollably, the legs jumping under his blanket. It’s unnerving to watch but he doesn’t seem to notice. They aren’t there when he’s sleeping but get very bad with the onset of seizure activity. So, if on the third or fourth day, his jerking is particularly bad combined with him being very tired we know what’s on its way

 

On Wednesday Lisa and Fred were going into town to so some shopping. His twitching was bad but not too bad. Fred got himself into the car but Lisa took one look at him as she got in and thought better of it. They had a little disagreement on him feeling “faint” but mother won out and the trip was cancelled, much to Freddie’s annoyance. As I was at work Lisa rang to say that they were settling in, the signs weren’t good and Freddie was going to sleep, waiting for the seizure to kick in. Its horrible being so far away not knowing what’s happening and as soon as I could I shut up shop and headed home, it was almost closing time anyway.  With the shopping done, it hadn’t been possible for Lisa to do it, I headed up and over theConnorPass, wishing my boy well.

 

The road to Ballyard, I turn off at Blennerville Windmill, was flooded so I had to turn round and go the longer way but still made it home in good time. Not wanting to fret myself any more than necessary I never call when on my way home, if the situation warrants it Lisa will call me. That’s the call I hate…Anyway in the door I came to see my man sitting up eating a bowl of Spaghetti Bolognaise and Lisa smiling at me. Fred looked up, sauce all round his mouth and said, with indignation...

 

“Mummy said I was going to faint, but I wasn’t, it was just her imagination”

 

Maybe for once, Mummy was been over cautious but she’s rarely wrong and the same situation unfolded Thursday afternoon, this time with consequences. The seizure broke through after Lisa had put him down to snooze on the couch. Nothing major just the now usual minute long body jerking, full fencing movement seizure that has become the recent norm. Lisa gave him the diazepam and he slept peacefully for the next few hours indeed he was till asleep when I came home. The long sleep is a bit unusual, he slept on till about 8pm when he woke for dinner. After dinner he was still dopey, some mixture of medicines is keeping the clusters at bay but taking a lot out of Freddie. In my mind, I think the reduction in the other meds is letting the Tegretol work, preventing the seizures spreading but not stopping their onset. Maybe when we get the weaning of the Frisium and Keppra finished and the Vimpat introduced our Freddie will get a longer, much longer break between episodes. That’s the wish of his parents, for now, that’s all we want…

 

One great improvement we’ve noticed recently is that the cloud of confusion that was covering Freddie’s brain seems to be lifting. The more he comes off the Frisium the more his concentration, alertness and memory is improving. This week as Lisa was driving Freddie around Dingle he started up with:

 

“When I was a baby we used to visit Siobhan in that house” as they passed Siobhan’s.

 

“When I was a baby we met Aunty Clare in that house” as they passed a complex of holiday homes…and so it went on.

 

The ‘when I was a baby’ is Freddie’s phrase for what he’s remembering now that the drugs are allowing his brain and memory to work.

 

Another one for the lexicon.

 

 

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1Jul/120

Early Mornings and Garlic Bread

It’s raining, has been since I don’t know when but who cares? There ain’t much you can do about it anyway. Today is the 1st of July, not much left of the official summer now….Freddie is beside me typing “Godzilla” into Google so he can find clips from the movies and Top 10 listings of Godzilla battles. Some of the clips are re-enactments done by teenagers in their bedrooms, put to the worst music imaginable. This is something Freddie does himself…he puts in a request for his box of Godzilla’s, naming which one he wants, there are a few different ones, and which arch enemy he wants him to fight. So he might ask for ‘circle Godzilla’ and after you’ve looked in vain through the box, he’ll say, “you know, the one with three claws, blue spines and circle cheeks.” Obviously, you now know, it’s the one with the chubby cheeks… While he’s been waiting for you to find the right set of monsters he’s searched YouTube and found the right background music to accompany the battle. So there he’ll be, pitching Godzilla in against King Kong with “Let the bodies hit the floor” blasting in time with each smash. It’s something I could watch for hours, Freddie mixing the tunes and pitching the screen monsters against each other with the sound effects and soundtrack just right.

The house has been up since 6am. Yesterday was a tough one for Freddie. It started great for him, big breakfast and me staying at home. For a change, I took Saturday off, deciding that six days driving in and out to Dingle was just too much. Fred loves these, what he calls “family days”.  Yesterday he asked, “Is this the first family day?” needing the reassurance that a great weekend was in store. To top it off Ruby had two friends staying over so he had girls to entertain when they eventually woke up. Every now and again he’d go into their room to see if he could wake them and show them his Godzilla collection…

“Ahem, girls?” he’d say, opening the door a small bit but they slept through it all.

When they eventually rose, he brought them downstairs and followed the three around, entertaining them with his stories. The girls hung about for a bit before they went off shopping, with Hannah promising that she’d be back. A promise Fred extracted from her before she left, those pleading eyes are difficult to resist. Not long afterwards, he started to feel sleepy and cuddled up with his Mum on the couch. He assured her he was fine but Fred needing to sleep during the day isn’t a good sign. The only benefit is that at least he’s beginning to now feel something coming on and it’s not sneaking up on him. The little man slept for a while but awoke feeling sick, another bad sign. Lisa got him a bowl but nothing happened and he went back to sleep. Before he went off to sleep he turned to his Mum saying; “You’re right Mum, I am feeling dizzy, I’m not ok”…such a man.

As I had work to do, I was in and out checking on the man but he slept through until about 5.30pm. Then, as he was waking, he went into seizure, a minute long one, upper body shaking and the fencing movement on full display. We immediately went on autopilot, holding him through it, putting him on his side afterwards and giving him the diazepam. The poor man woke briefly to use the toilet and take his evening meds before returning to a deep sleep. Unusually he continued to sleep until about 8.30pm when he woke to demolish his dinner. Earlier I’d made him a favourite, a plate of a couple of slices of fried new potato with a lamb chop, it was on the floor beside the couch and gone in sixty seconds. After that, he had a sip of my beer before cuddling up again for the night, coming to bed with me about 11pm. There the two of us slept until Lisa woke us at 6am, fearful of another early, morning after, seizure. The result was we all got up; Ruby included and continued our sleeps on the comfortable couches in this lovely house of ours. Of course nothing happened.

It has been a week of early mornings. On Wednesday, I woke about 7am with him going into a seizure beside me. Again we managed the situation, it was all in over in a couple of minutes and the three of us were downstairs by 7.15am. He slept for a while and after breakfast, I went off to work. During the day I phoned home regularly, checking on him but all was fine. Then Lisa rang about 5.30, as I was on my way home, the inevitable had happened... a second evening seizure. Ruby and Lisa coped as usual, making him comfortable, safe, secure, and loved. By the time I got home, he was awake, eating dinner as if nothing had happened. At midnight he was still awake, the two of us looking out at the lights ofTraleefrom our room, watching the cars on their way home. We read stories in bed before he slipped into a nice deep sleep. Freddie had just put a full day down but again the epilepsy had not won.

Two full-blown seizures in one day have become unusual, thankfully, but we just have to live with it. At least he’s not clustering and the hospital not being visited. Why he’s also now had two days of seizure activity in one week we just don’t know. Nobody knows feck-all about epilepsy, experts can guess, point at factors like weaning off the Frisium but in reality, we just don’t know. We’re still waiting on the PET scan to give us some insight on what’s happening, when and if surgery is possible. If we don’t hear soon, Lisa will be driving to Cork finding who’s responsible and getting all up in someone’s face. Beware CUH, be very aware…

During the week, I made a favourite dinner, on request from the man. Lasagne with spinach, mushrooms and a creamy sauce. Clearing out the bread bin, I made some garlic bread from the rump of a loaf. The thick slices of buttery, garlic bread went down quickly with the special request lasagne. Later, before Freddie settled down for sleep, I was in the kitchen getting a glass of wine and he followed me in. The fridge was opened, I had a feeling of what he was after, the addict was after a hit. From the plate of leftovers, I gave him a corner of a slice of the garlic bread…

“Don’t tell Mummy,” I instructed him, adding to the illicit pleasure of the snack.

Before I knew it, he was in the corner demolishing the corner in seconds but with gulps of pleasure. Then he went to the sink and started washing his mouth out, trying to remove the garlic scent so his mother wouldn’t know he’d been eating. Back in the front room he cuddled up to Lisa, the stench of freshly eaten garlic filled the room…

“What have you been eating?” asked Lisa, laughing, knowing he couldn’t resist a slice from the fridge.

“Oh, nothing” he said, hand over his mouth looking at me for back-up, those pleading eyes open wide, eyebrows raised.

That little fellow…he knows how to break hearts…

 

 

 

 

 

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