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

30Mar/140

Such a Simple Day

It’s a beautiful spring day in Ballyard. Freddie got the notion this morning of rearranging his / our bedroom, “just like Ruby,” he said, through his stretched voice.  When I got back from shopping Freddie had got his Mother out from under her blanket and had moved the bed around, to under the window. Not only that but he had set himself up for the day with his DVDS and player, spread out on top of the duvet, under which he was ensconced.

His stretched voice is from the VNS putting pressure on his voice box each time it kicks in but only for a few seconds and if he happens to be talking. Small price to pay if it works. Last Sunday, though a cluster day, seven in all, wasn’t as bad as previous ones. The seizures were spread nicely throughout the day and we didn’t have to intervene with the diazepam to stop the run. For us, and of course Freddie, not using the diazepam is a major improvement. The drug is so strong it lingers in his system for days making him sluggish and sleepy. Dr Amre says it slows the brain for days afterwards and this is very obvious with Fred. So he slept well Sunday night, stayed off school Monday but was coming back to normal by Monday evening.

On Tuesday as we got ready for school he looked very contrite, standing in front of me, school shirt on, open at the collar....

“What is it?” I asked.

“I’m sorry Dad, sorry for all the fainting,” he said, head down, shaking it slightly from side to side.

“It’s not your fault,” I said, holding him to me, squeezing him so tightly I could feel the VNS under his skin.

“”Oh?” Fred said a bit quizzically, “that’s ok.”

We finished getting dressed and rushed off to school, not wanting to be late for Denise. At the classroom door Fred was hesitant about going in. The noise of the other kids talking Fred finds very disconcerting. As he can’t keep up with conversations a classroom of kids chattering just comes across as loud babble. He was looking at me, shaking his head...

“I can’t go in there Dad, it’s too noisy,” he said.

Then couple of kids passing all said “Hi Freddie” and even Jaden passed, smile on his face that his friend was back at school.

“You can,” I said, “and look everyone is happy to see you.”

“But Dad,”

Then Denise came and took his hand, Fred walked in slowly, head down and with the worries of the world on his shoulder. When I came back a few minutes later with his bottle of water, he was well settled in his desk, books out and his day begun.

That afternoon he had Ms O’Se around, no escaping for our Fred but she was happy with his work, though she commented that he was a bit tired. Whether that was put on by the man or just a natural result of Sunday combined with being back at school we’ll never know; who does when it comes to Fred?

On Wednesday morning, just after Lisa and Ruby had gone off to Dingle, Fred said he had the confusion.

“Do you really have it?” I asked.

Fred nodded, so we went inside to lie down and I gave him a few swipes of the VNS magnet.  I sat in beside him and he cuddled up. It was 8.15am and I thought I’d give him a few minutes to recover. About 8.25am I got up, saying that I had jobs to do. Fred wasn’t in a sleep by then, normally in the circumstances he drifts off quite quickly.

“With all this confusion Fred, we won’t be able to go the Waterford at the weekend,” I said. Lisa and I were planning a trip if all was ok, just a day away to give us all a change of scenery. We hadn’t yet mentioned it but I decided it may be a good time to play the trump card.

Fred shot up from under his blanket, a big, beaming smile on his face...

“Tricked you!” he exclaimed, pointing a finger at me, laughing as he spoke.

“We you pretending with the confusion?” I asked, needlessly.

“Fooled you Daddy.”

I gave him a talking to about how we needed to trust him with the confusion.  In fact I wasn’t too annoyed, remembering my own pretend sore throats and pains in my tummy from wet school day mornings. If anything I was relieved that he was keeping the epilepsy at bay.

Fred nodded as I explained and promised that he wouldn’t do it again. We got to school just as the bell went and he went off with Ms O’Se and the other kids for the midweek socializing time. This time, with just one or two other kids, initiated by Ms O’Connor, is an attempt to get Fred interacting and talking more. Little did we know the trouble it would cause....

Fred came home upset, very upset. He stood in front of me say that there was a big problem at school. Jaden wasn’t talking to him anymore. At the social class Fred had made a new friend, TJ and Jaden was very put out. Fred, in an attempt to make TJ feel welcome had spent a lot of time with him, playing and laughing. He even invited him to come to Waterford. Jaden was devastated and blanked Fred for the day. Poor Freddie, he had been told to integrate more and now that he had he’d hurt his best friend. Little Jaden must have been very put out as he is so very caring of our Fred. I tried to explain that it would probably be ok, that Jaden would have forgotten all about by the next morning.

Thankfully he had and Fred came home in great form. They had made a Mother’s Day card at school which he had behind his back. He presented it to Lisa and they had a big hug in the kitchen, followed by some great lines...

“You are so beautiful my Mummy, I love you so much.”

“You are so pretty and so good at caring for me, I love you my Mummy.”

Fred knows how to use his words, how to break his mother’s heart. The hugging went on for ages, along with a lot of cracking, heart breaking one-liners.

Oh that boy.

All week the talk was of Waterford. Denise said it was all he talked about, as did Ms O’Se. Once Fred gets something in his head it can be very difficult to get him thinking of anything else. Denise was said to be very cross that he wasn’t concentrating on his reading, just thinking of Waterford...

Eventually Saturday morning arrived, the countdown was over.

All went so smoothly that it was difficult to remember that just a year ago we wouldn’t have dreamed of doing such a trip. Lisa and Fred had the back to themselves, Ruby and I the front. After a while Fred was driving his mother “distracted” with asking where we were, what town was next and are we almost at Waterford? A bit of a change from ‘are we there yet?’ For awhile he was asking who lived in each town named to which the answer ‘nobody we know’ was wearing a bit thin. A coffee stop in Midleton broke the tension.

At Uncle Bill’s we were welcomed with open arms, Fred going off with his cousin Lucy to watch movies and I could hear plenty of chat coming from the front room. Fred was making an effort and wasn’t calling on us for help. Even when I told him it was time to go he wasn’t happy and it was only that we were going to see Aunty Claire could I get him away from Lucy.

At Aunty Claire’s Fred ran in from the car and nearly knocked Claire off her feet. For a good five minutes they hugged, Freddie not letting her go. We stayed in the car watching, the plan was to go for lunch in Dungarven and Fred was only fetching Aunty Claire. In the car Fred was beside himself, sitting next to Claire in the back, beautiful Mummy forgotten. At the restaurant Fred had to sit in with Claire and they both had the same lunch. Poor Aunty Claire even had to accompany him to the bathroom, for all the pleasure that entailed. By the time it got to five o’clock it seemed such a shame to have to break up the party. But it was the end of a great day. A simple family day out but when these go so well for us it is a major achievement. Fred said his goodbyes to Aunty Claire we headed for the West.

In the car Fred cuddled up to his Mummy once more. He hadn’t forgotten her completely and he slept laying up against her, under his blanket, the sleep of a contented man.

Last night as the two of us were about to go to sleep I asked what was his favourite part of the day. Without hesitation Fred answered...

“The restaurant, it was delicious and Aunty Claire was there.”

With that he rolled over and into a deep sleep.

A perfect end to a perfect day.

 

 

Share
Filed under: News No Comments
23Mar/140

You Never Know With Fred

It always amazes me when a seizure hits Fred in the early morning. One moment he’s sleeping like the child he is and the next he’s in a stiff ball, possessed by the tiniest quirk of his brain misfiring. The noise he makes is horrible and it chills me to the bone every time I hear it. So it was this morning. I’d had a poor night’s sleep and probably and only dropped off by about 2am. This wouldn’t be too bad if it weren’t for the fact that I’ll wake every hour afterwards to check Fred or to just move him, as he’s prone to wrapping himself around me like a heat seeking vine. It must have been around 5am that I checked him last, looking at his innocent face sleeping the night away.

We’d gone to bed later than Lisa and Ruby. Fred loves to stay up late and is allowed do so on Friday and Saturday nights. Since Christmas he’s been getting himself in trouble by beginning to talk about going to bed late from about noon onwards. He’ll throw it out there, waiting for his mother to react and then look at me for support...

“I’m not going to bed with you tonight Mum,” he’ll say, looking at me over his shoulder as he speaks.

Lisa, tired of fighting with him over bedtimes will answer...

“Really?” her head to one side, looking at Fred down her nose.

To which Fred replies...

“Yes, really Mum.”

Thankfully this only happens at weekends, Fred was pushing the bedtime row during the week for a while after getting in lazy habits over Christmas, leading to his mother putting her beautiful foot down and insisting on early bedtimes. Fred knew he’d lost by about the third week in January and things have settled since then.

As it happens we were in bed by about 10.15pm last night. We read the usual quota of three books and Fred fell asleep with his head on my chest. About an hour later and after moving him to his pillow, giving him a last swipe of his VNS with the magnet, I tried to catch that night train as well. No such luck but at least I must have gotten some sleep, as I was woken from a dream by that noise at 5.45am.

We don’t know if the VNS is working or not. There may be a pattern of the cluster not kicking in immediately, he’s only had two in total so far today, and lately the afternoon will see the main onslaught of another four or five. This could also be to do with his morning medicines protecting him too, but they are slow release so maybe not. The breakthrough seizure two weeks back was around 1pm, when the meds should be at their peak so in theory he should have been well protected.

This is also day 22 since the last cluster, but only day 15 since his last seizure. During the week he’s had some bad periods of confusion, the state that overcomes him in the lead up to a seizure attack. Each time Lisa has managed to give him a good few swipes of the magnet and after a short snooze Fred has bounced back as right as rain. The swipe of the magnet raises the amp output by one level for thirty seconds. As this will be the dose it will permanently function at after the next visit to clinic at Temple Street maybe we will see greater help from it afterwards. As everything is with Fred, he’ll push it to the limit, so it may have to be the highest setting that will be the therapeutic one for him.

Who knows?

On Tuesday Lisa, Fred and Jaden had gone to the beach to collect shells. The first trip of 2014 and Fred was really looking forward to it. No sooner than they’d arrived on Fenit beach than Fred had got a bad attack of confusion. I was upstairs when they arrived back and looked out the see Fred stretched out in the leaned back front seat. Of course I guessed the worst had happened but by the time I got downstairs Fred was being walked in by his Mum. She’d been swiping him since they’d left the beach. The poor man looked terrible but after a short snooze he was up and playing with Jaden as if nothing had happened. Jaden had been the hero on the beach, helping Lisa get Fred back in the car and packing up the bag of tools Fred had brought for the excavations. While Lisa and I were getting Fred settled on the couch, J was unpacking the car and putting everything away. As Fred slept Jaden took the opportunity for a snooze himself, the two friends having forty winks on the couch.

Even on Friday he came home early from school, only about fifteen minutes ahead of time. I knew the way Lisa was walking him that all was not ok. At school he complained of not feeling well and had got a bad dose of the jitters. Ms O’Connor wasn’t too sure of his motives but we can’t take any risks and she’d called Lisa in to take the man home. Again after some good swiping he was back to normal, sitting up waiting for Ruby to arrive home with Ali come tea time.

Maybe the signs are that the VNS is getting Fred through the bad days to an extent. Maybe in time it will give him the overall protection we all so crave but we’ll have to be patient.

One problem Lisa is tackling head on is Fred’s speech difficulties. His brain is slow to react, you ask him a question he’ll take an age to answer and of course he’ll get distracted in the meantime. What Lisa is trying to do is to get Fred out of the habit of getting distracted so easily, not to let Fred get away with not answering. We’re all guilty of letting him off and he has been letting it become a habit, not having to answer a question. Also his lack of social activity has meant he hasn’t had to be in conversation much and this has led to bad speech practice. So now we’re trying to encourage him out of his world, get him talking and answering questions when asked. Yesterday morning I had a printed list of exercises; questions and list making samples mainly. He rebelled against his mother when she brought it out after breakfast but when I got the look from Lisa that would send Putin home from Crimea, I knew it was time to get involved.

We got there in the end but it wasn’t easy. Just simple questions like ‘list three things that smell’ could take five minutes. Not that Fred didn’t know the answers but for the last few years he hasn’t had to apply himself,  so after ‘old cheese’ he’d look out the window, drift off to Godzilla land, before I’d try drag him back. Maybe if we keep on top of him Fred will get the hang of it, knowing that he can’t dodge the work but more than anything he needs the social interaction to keep the brain thinking.

Another time will tell with our Fred.

For now he’s sleeping downstairs in his mother’s arms.  The VNS is being swiped and he’s waking from time to time.

Maybe there is an afternoon of it ahead of him, who knows?

Fred is safe and for today that is all that matters in our house.

Share
Filed under: News No Comments
20Mar/140

Getting in Trouble, Again

A beautiful, sunny, spring day in Ballyard. Fred has Jaden over again and so far so good. Unfortunately it wasn’t so good last week but we’re not going to let epilepsy determine our lives anymore. At least that’s what we’re saying...there was a time, not long ago when it did rule our every movement and we don’t want to go back there.

During the week we feared we might be going backwards though. On Wednesday morning Fred had a small, almost imperceptible frontal lobe seizure about 5.30am followed by another about an hour later. These would have passed unnoticed except that I was beside him in the bed. Sometimes you wake because of the noise and it happens so quickly that you wonder if you imagined it. But in the back of your head you know you didn’t, that noise Fred makes is so unique that you can’t deny what it means. So about 6.45am or so Lisa took over and I got up to do the Dingle run with Ruby.  Before we left I went to say goodbye and Fred was fast asleep, no more episodes and Lisa had already rung the school to say he’d be staying home. Maybe, we both thought, that the cold which kept him home Monday had interfered with his meds; it wouldn’t be the first time. It might have been incubating on Saturday when he’d had the breakthrough seizure. Who knows?

Well someone who may know would be Dr Amre and so Lisa gave the Neuro Dept at Temple Street a call to ask what we should do. I feared that maybe as Fred was growing, though not putting on weight, his meds may not be working as effectively as before. Now the thing with epilepsy meds is that the slightest change in dose or ratios can completely throw them off from working properly.  Once you lose that equilibrium it can be very hard to get it back again, especially when you are growing boy like our Fred. It’s not always a case of adding an extra few milligrams; too many and the side effects can be terrible, too little and you won’t see any benefits.  Once epilepsy sees a gap it heads straight for it and closing off that gap again isn’t easy. It has taken Fred years to find the right meds and the correct dose, so any setback could be terrible. This problem also arises when dealing with generic and non-generic medicines. If the generic works it’s not certain that the non-generic will if you swop over...

With all this in mind I headed off to Dingle and didn’t hang around in getting back to Tralee. When I walked in the door Fred was sitting up on the couch eating his breakfast and watching TV....

“Hi my Dad,” he said, “I can’t go to school as I just fainted.”

There was a note of happiness in his voice...

Lisa was in the kitchen and the news was that he hadn’t had any more seizures but she was keeping an eye on him. Fred’s cold, though not as bad as Monday was still there and Lisa was preparing the miracle cure-all of hot Lemsip. The call had been made to Temple Street and a message left for Dr Amre.

When I was at my desk a bit later the call came from Dr Amre’s Registrar and she took all the info necessary. That evening Lisa got the return call saying to leave everything as it is, the cold may have had an effect and we need to keep a steady baseline when judging the VNS. Next month we have an appointment with Dr Amre and if we can hold till then all the better. We’ll just have to wait and see. So far so good and as I look out the window now three days later, I see the two friends playing in the car.

On Wednesday afternoon Fred was very sad....

“I wish I didn’t have the faints in me,” he said,” I’m sorry my Dad.”

What can you say to that, it’s not his fault but he knows how much we all hate the epilepsy. The important thing is that Fred knows it’s not his fault, just his bad luck to have the condition. We hugged for a while, me trying not to cry, Fred holding me tightly to him.

One pattern returning this week has Fred getting himself in trouble with his parents. Nothing major, just not doing what he’s told or asked. Too many times in the past he’s run off to avoid doing homework and has ended up in a heap on the ground. At times we’d leave him off but I think this week we were more stressed than usual and the last thing we wanted was to be picking him off the ground when he should be inside. Also Fred will, like all males, try to get away with doing what he doesn’t want to...

On Monday he wouldn’t do what he was told or asked and ended up in his room. A very cross Daddy sent him up and he went in a huff. A few minutes later I checked on him and he was sitting on his bed looking out the window...

“Are you sorry?”

No answer, just the stare out the window.

I headed off and just as I headed up to my office I heard the sobs. Forced ones but enough to grab my attention. Back I went and the red eyed man looked at me for a second before breaking into tears. I went over to hug him...

“I’m sorry Dad,”

“For what?”

“For being bold.”

We went back downstairs and Fred apologised to his Mum. By the time I headed back up he was settling down to his homework. The poor man gets himself in such strops sometimes and he always ends up doing what he was refusing to do earlier. By and large though I notice he wins a lot more arguments with his mother than I do. After nineteen years I’m still waiting to win my first...

On Wednesday he got himself in more trouble and Ms O’Se came around to find him banished to the Laundry room. When I came down she was coaxing him out and in fairness Fred knew he’d lost that one too. After Ms O’Se had gone Fred said he did excellent work, no mention of what had happened earlier.

Since Wednesday though he seems to have made an effort and hasn’t had any more rows with his parents. Thursday morning he got dressed, on his own, in double quick time and we were at school earlier than usual, really making an effort...

Friday morning he did the same and went off dressed in green for the early St Patrick’s Day celebrations. Afterwards the two of us went off to do the shopping, a reward for being good and Fred was eventually getting to use his writing pad bought last week. The reward was really for me; being able to relax while doing an everyday job like shopping is still a novelty. We walked around the supermarket, filling the basket and Fred ticking off the list as we went. Last on the list was the swimming togs, Fred hadn’t forgotten the visit to the Aquadome a couple of weeks back. Thankfully they don’t yet sell swimming gear at the supermarket so I was able to dodge that bullet. I don’t think Lisa and I are ready yet for that one.

On our way home in the car Fred asked...

“How did I just do at the shopping?”

“You were excellent,” I answered.

As he always is.

Share
Filed under: News No Comments
9Mar/140

Fred and Hugh

On Monday Fred just did not want to go to school. Sunday evening the excuses began and they were still going Monday morning at breakfast time...

“But Dad, I can’t go to school, I had the fainting,” a reference to his bad day at the museum on the Friday.

Followed by a line such as “I can’t go back to that place it’s too noisy.”

The noise is a recurring problem for Fred, as it is for a lot of people with epilepsy. Background sounds become amplified or meld into just white noise and it can be very difficult for Fred to tune in. Also with Fred having difficulty in keeping up with conversation, he really needs to concentrate and is only good at one on one chat. This was a point highlighted at a meeting we had in Dublin Friday morning. As Fred needs to think between each word, dragging the words together from the back of his brain, group conversation is next to impossible.

As the two of us got ready for school Fred was yawning and insisting that he was too tired. My usual comeback is that if he doesn’t go there won’t be anymore trips to the museum, no more fun at school and the trump card, no more Jaden. In Fred’s mind there would be nothing worse than not seeing the J man again so he reluctantly agreed to go.

After school Fred was very tired, nothing too unusual there for any man or boy on a Monday. He told me that Denise was cross with him for not knowing his words. Somehow I doubt if Denise was cross but she was probably trying to overcome a big problem in Fred’s reading skills. Fred he is very visual. His reading can be good when the text is accompanied by illustrations, another point that was raised at Friday’s meeting. What Denise had been upset at, as we all get at times, is when Fred can read the words in his book but not when they are on his separated word cards. The fact that his concentration levels are fairly poor doesn’t help either. At times Fred will prefer to look out the window or what someone else is doing rather than the matter at hand. Doesn’t help when you are trying to teach him and Fred is lucky to have a patient teacher like Denise.

Then on Tuesday he came home bright as a button. Denise had been very pleased, he said. When Ms O’Se came round for the afternoon hour she reported that Fred did great work and she was delighted with him. What a difference a day makes and Fred was lapping up the praise, delighted to make all the women happy.

Wednesday morning and there was another school trip planned. This time to the Aquadome, just next to our home here. Unfortunately, the one activity that is too dangerous for our Fred is swimming. With his epilepsy so unpredictable, though it has been good lately, the risk would be too high of something going wrong. Fred was not happy with not going swimming. The bus trip was on but actually going into pool was not allowed. Fred would sit with Denise and Rose in the café, watching the kids and playing games. Lisa was worried about the whole venture, after the trip to the museum on Friday going wrong, but as Rose assured her, he’d be well marshalled and would have a good time.

Fred did have a good time, though unhappy with not getting into the pool. He told Rose that next time he’d be bringing his swimming gear. We’ll see on that one. But at least he had another incident free school outing though Lisa, sitting at home, was none the better for it. Each time the phone would beep Lisa would jump, a call would put her off the deep end. Eventually after the two hours of torture she could take no more and shot off to be outside the school for when they came back, just in case. Though I was laughing, teasing her by saying I could see Coast Guard helicopters outside, I fully understood why she was so worried. It’s not easy being Freddie’s parents.

Fred was full of it when he came back….

“I have to go in that pool Dad,” he said, looking up through his brown eyes, “I need the exercise. I need to build my muscles Dad.”

This from a man who would have no problem asking his mother to get him a glass of water from the kitchen, even if she was sitting next to him. The poor fellow, he used to love his trips to the beach. I still remember holding him in the sea, letting him float on the gentle waves of Beenbawn, holding tight to his wet and wriggling little body. If he could he would have taken off after Ruby into the big waves, the sea held no fear for him. The laughter still rings in my ears from when he’d catch a small wave with his body board and wash up in the sand. Hopefully, those days will come back to us; I know Fred would love them.

On Friday we had another appointment at Temple Street, two in fact. The first was Fred’s next jump in the VNS settings. The double jump the last time was a bit too much, so this time Suzanne would only do the single bump. After the meeting with Suzanne we’d have the second of the sessions with the educational psychiatrists. Before all that though, we’d have a night with Conor and Cathy. The highlight of any week for Fred.

This time Ruby came with us so it was a real Verling family road trip, complete with rows before we even go out the door. Ruby was allowed stay home, saving us a trip to Dingle but Fred had to go to school. He was far from happy with this but at least he was coming home early, 12.30pm, so we could get on the road. I picked him up from school and he gave Denise a big goodbye, she telling him to have a good time with Conor and Cathy. Fred of course had filled her in on the trip, probably since he’d began counting down the days on Monday.

In Dublin Fred had a ball, as we all did. The make the trip even more special we had a Chinese for dinner and I think it was the only time Fred was quiet all evening, munching away at his vegetable noodle dish. It’s one of his favourite things, piling the food onto the prawn crackers or the white crisps as he calls them. That night we all slept soundly. Fred cuddled up to me and slept like a babe, the Chinese doing its job. No wandering around the house looking for a comfortable bed, not sure if he’d be better off with his mother or his Dad. The fact Ruby was cuddled up to he mother probably put him right on that one, she wouldn’t be too happy with being disturbed.

On Friday morning we headed over to Temple Street. Lisa and I were expecting a long session with the psychiatrist but we were out by 10.30am. The bump up with Suzanne had only taken five minutes, so we even had time for breakfast before the second meeting. The meeting went well. Though they could see that Fred had concentration problems they believed it’s linked to his epilepsy rather than any attention deficit syndrome. Though we also believed that, it was great to have it confirmed. The last thing Fred needed was to have another condition to deal with. We discussed the findings of the school report and highlighted Fred’s need for more social interaction. The points we were aware of before, speech problems, concentration problems, slowness in retrieving stored knowledge, it was all there. It will be hard work getting to overcome these difficulties but we will, Fred will get there.

After Temple Street, the ladies went shopping. Ruby had a party on Saturday night and she needed a top, plus half a dozen extras too. Fred and I dropped them by the Jervis Street Centre and went off on a drive.

As we drove up around Parnell Square I noticed the HughLaneGallery….

“Would you like to see some paintings?” I asked.

“Sure,” he said.

“Let’s go to the art gallery so,” I said, parking up in the disabled parking spot right outside the door. I hadn’t even checked if it was open, it was only 10.45am, but thankfully it had been since 10am.

The HughLaneGallery is in a beautiful old building in the centre of Parnell Square. In it’s time it must have been one of the finest buildings in Dublin, overlooking O’Connell Street below it. The gallery houses some of the finest Irish art with some wonderful pieces by Monet, Rodin, Pissaro and others.

“Wow,” Fred said when we walked into the reception area, “it’s so beautiful.”

We laughed at the Rodin bronze sculpture of the naked man near the entrance. In the galleries we wondered at some of the large canvases and Fred loved it...

“Can we see more?” he’d ask as we’d finish one room and move onto another.

In the Francis Bacon section, his studio in London, donated by Bacon to the Hugh Lane, has been carefully transplanted. Fred loved looking through the glass panels at where Bacon worked. We both agreed that Mummy wouldn’t be happy with the mess.

Downstairs Fred wanted to go in the bookshop and look around. He was fascinated by the fancy writing pads, at €12.50 very fancy, and every time we passed by he wanted to go in and look at them. When Lisa and Ruby joined us he brought them in to see the writing pads. After a coffee and lemonade in the cafe we hit the road to Tralee. In all Fred and I had spent over two hours in the Hugh Lane and we both loved it.

An uneventful trip home finished with Fred reminding me that I’d promised to buy him a writing pad when we got back. The two of us set off, leaving the ladies to settle back home. In the stationery shop we found just the right pad and some good markers, all for €4.50. Fred loved them and has been practising his words all weekend.

Yesterday though he had a seizure in the car. Only 8 days since his last one. Lisa was dropping Ruby and Ali to the bus when the confusion came on him and he couldn’t fight it. Jaden was there too and he helped Lisa get Fred comfortable. Poor Fred, so soon after the last one and just when Jaden had come over.

Thankfully though it didn’t develop into a cluster and Fred slept it off, waking in time for dinner. I asked him what happened and he said he had the bumping confusion that he couldn’t stop. What this is we’re not sure but I think he meant a strong build-up that happened so quickly it hit with little warning. Today he has a cold, maybe that added to the problem, we just don’t know. The only thing we can do is wait and see, hopefully the eight day break was just a freak event. The fact a cluster didn’t develop must be a good sign.

Fred slept well last night and is downstairs watching a movie.

It’s almost like yesterday’s seizure never happened.

Somehow I think he’ll remember it when it’s time for school in the morning.

Fred wouldn’t be Fred otherwise.

 

 

 

 

 

Share
Filed under: News No Comments
2Mar/140

Fred’s Nightmare at the Museum

Last week Fred had a nightmare about the museum. When he woke up in the morning I was told all about it. The big dinosaur and the pterodactyl had chased Fred through the building, trying to catch him.  Fred described in detail the big teeth of the T-Rex and the wings of the pterodactyl has they tried to track him down for dinner. I asked Fred which museum all this had happened in and he answered...

“The big one in town, where I went with Jaden and Denise,” his eyes wide open and the fear still written across his face. In his dreams he’d created a mash-up between his favourite movie, “Night at the Museum”, and a favourite school trip of last year. Some imagination at work in our Fred’s head.

So this week ,when back from the mid-term break, we got a note home saying they were planning another trip, this time to see the exhibit on medieval life, it seemed very appropriate. Denise explained to me that they would be going over on the bus and spending about an hour digging for bones. Heaven for our Fred, a trip on the bus and an archaeological dig, he couldn’t be happier.

All the talk was of the bus.

“What day is it today?” he’d ask.

“Tuesday.”

“Four more days and we’ll go on the bus,” half a question and half a statement of fact but the excitement was building.

Before the excursion Fred had to get through the week at school. On Monday he was a very sleepy boy, not wanting to get out of bed and not waking fully till at the breakfast table.  Even when getting ready for school he was rubbing his eyes and complaining of being tired...

“I’m too tired for school, my Dad,” he said, struggling to button his shirt, yawning and trying to snuggle into me for a snooze.

We eventually got out the door and Fred was happy to see Denise and Jaden at the classroom door.  As it was getting into the red zone with seizure free days I was a little concerned but Denise and Rose are well capable of reading the warning signs. I said it to Denise that he might be a bit tired and she said...

“We’re all tired this morning Freddie, I could barely get out of the bed myself.”

There was something reassuring about the way she said it that made me knew Fred was in good hands, that he was being well looked after.

He came home lunchtime full of talk about the museum and the tone was set for the week.

Swiping his VNS with the magnet started again this week as well. The effect of the double jump had been too much and under advice we left it alone for two weeks. We were worried that the renewed swiping might knock him but he didn’t seem to mind the extra jolt. The only side effect was the strained Marlon Brando for a few minutes afterwards but nothing else.  Every twenty minutes or so either Lisa or I will find the VNS under his skin and swipe the magnet over it in an X shape. The little black magnet has become part of the furniture now, wherever Fred is you’ll see it somewhere nearby. Even when he’s asleep he gets a swipe, no escaping the swiping in this house.

On Tuesday Fred came home saying he wanted to quit school, he’d had enough of Denise and her rules. Apparently he’d wanted to go home and Denise had told him he had to stay. They’d been playing ball in the yard and Fred got a ball in the stomach. Now I’ve seen these balls, they are soft and with some air left out, so they can’t hurt anyone or break a window. The effect of one in the stomach can’t have been bad but Mr Dramatic saw it as an excuse to slip off home. Thankfully Denise is up to his ways and put her foot down...

“But Dad,” he said to me, palms out flat, imploring me, “I’m sick of that school and those rules.”

“Well if you don’t go to school you won’t see Jaden or get to go to the museum on Friday.”

“Oh, all right but I’m sick of their rules,” was the resigned reply.

Not a man for rules is our Fred.

Each day this week he’s had Ms O’Se over for the afternoon session so there hasn’t been any escape from the homework. On Wednesday Fred pulled the headache card but Lisa and Ms O’Se were having none of it. Fred took a couple of painkillers and Ms O’Se got stuck into the homework. As I left the kitchen I saw Fred settling down to the work, Ms O’Se wasting no time. Fred knows when the game is up and taking on the might of his mother and Ms O’Se just wasn’t a battle worth fighting.

Friday morning was the day of the big trip. Fred was excited about the bus and said he was going to sit with Jaden. In the playground Denise met us and Fred gave her a big smile...

“Good morning Denise,” he said very politely, “When are we going on the bus?”

She laughed, “Oh Freddie, not until twelve o’clock. We have school work first.”

No escaping the schoolwork for our man.

At midday Lisa drove down to the school and watched them all file onto the bus, Fred walking out with Jaden. She followed the blue bus across town and took up watch outside the museum door. Fred filed off and walked up the steps of the museum with Denise on guard beside him. In they went and Lisa settled in for the duration.

Then her phone rang.

Fred had made it in the doors but collapsed on the hard marble floors. Lisa was in like a shot and Fred was just coming through the seizure. Rose and Denise were with him. He’d crashed off Denise and slid down, giving his head an awful wallop. The lump on the side of his head when he got back home was the size of a tennis ball. The three managed to get him up and with the help of the museum attendant got Fred into the back of the car.

Fred had made it to the museum, the aim of his week but not beyond the lobby doors. That afternoon when Ruby came home he told her he’d been on the bus and gone to the museum but he’d fainted inside.

It was day twenty seizure free, a slight improvement on the last break and illness aside, he’d had a clear run of it. The day itself went fine, under the circumstances. Lisa took charge and she nursed our boy through the worst of the cluster. In all Fred had seven seizures, Lisa had given him a shot of diazepam after the sixth and as always,  epilepsy had one last shot before he went to sleep. Just before he got into bed it threw Fred to the floor, Lisa as always there to catch him. That besides, he had a very peaceful night and stuck to me like a limpet, even getting in a few dreams, judging by the running legs.

In the morning when he woke up Fred looked up at me through his battle weary eyes...

“Dad?”

“Yes, my man.”

“I’m sorry I fainted at the museum, I couldn’t help it.”

Just now I heard him coming up the stairs. I’d left Fred and his Mum in peace downstairs an hour ago. There was a knock on the door and Fred came in, looking sorrowful through his sellotaped glasses. They too had gotten a bashing off the museum floor.

“Me and Mum were fighting.”

All is back to normal in the house.

The cycle begins again.

 

 

Share
Filed under: News No Comments