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

19Aug/120

Creamy Mushroom Pasta

The week gone by has been one of the normal ones for us. The only difference was that Freddie improved on previous weeks. The recent jerks and yips were gone. His concentration was excellent and his speech much improved. It is hoped or at least we hope so anyway, that the Vimpat is eventually getting into his system and helping him to cope better. He’s not needing to take a nap in the afternoon and in fact, the long sleep he took last Saturday seems to have done the trick.

 

That’s not to say that all is ok in the little man’s world.

 

Last Thursday evening I spoke to Lisa before leaving for home, to see what was needed, grocery wise. All was well and the family was beginning to settle for the evening, eagerly awaiting the arrival of Hannah on a sleepover. It’s been said before but we all love having Hannah around, especially Freddie, as he likes having a lady to impress. Ever since we moved toTraleeand even more so to Ballyard, it’s been possible for Ruby to have friends around to stay. All summer we’ve had girls on sleepover and Freddie loves it, even though he fakes shyness when they first arrive. The girls pay him attention as a result and try to coax him out of his shell…not sure where he inherited that skill from…Another great treat for me is the company on the way home as since Ruby finished school, the road toTraleehas been lonely in the evening. Hannah and I always start slowly but before we reached the top of theConnorPassshe was in full flow and discussing everything from school to the Olympics by way of summer jobs and TV shows. The time flew and before I knew it, we were pulling up outside number 26.

 

Hannah is so relaxed in our house that she jumped out of the car and walked in without me. As I followed with the shopping, it was obvious the house was too quiet. There, in a deep sleep on the couch, was our Fred. He’d gone outside for “some fresh air” and had come in because the confusion had come on him. Lisa and my hero went to lie out and soon afterwards, the dreaded seizure struck. Not a big one, the now usual minute long, expression of fury as it breaks through type of seizure, all just after Lisa and I had spoken

 

Ruby and Hannah went upstairs to chat about boys and make-up, leaving me to get over the upset. No matter how many times it happens, it always upset us. We try to carry on as usual and not let epilepsy control our lives but it hurts deep down inside. Lisa lives with it twenty-four hours a day and the hurt is with her all the time. At least I have the escape of work.

 

Lisa had made, on request, Freddie’s favourite dinner and now the little man was missing it. Creamy mushroom pasta, the dish is as described, has been his favourite since I don’t know when. Years ago I remember making a big bowl and having to fight him not to have anymore. That next morning he’d woken early and I heard him go down to the kitchen, he knew there was more, the nights sleep hadn’t affected his memory. Listening out, I heard him get a plate and open the fridge looking for the previous night’s leftovers. Soon the sounds of yumm and mmmm could be heard coming from the kitchen. There was no stopping him that time and his love for creamy mushroom pasta hasn’t dimmed since. Last Thursday night he had to sleep through the girls eating his favourite but as usual, there was plenty left for the next day.

 

All evening he slept and the two of us went to bed about 11pm. He slept soundly till about 2.30 when he had a small frontal lobe seizure, no more than about five seconds long. How I wake to such small movements I don’t know, but Lisa and I must have very sensitive sleeping patterns these days. About forty minutes later, he had another one. Nothing to be concerned about I thought as they were so small. However, about 4am he had another, quickly followed by a second one. I called Lisa and she gave him a half shot of diazepam to try settle his brain. As I was driving to Cork that morning Lisa sent me down to sleep on the couch while she minded the little man.

 

About 7am, they came down and Freddie cuddled up to me under my blanket. Lisa went to get a cup of tea and Fred started to tell me about a dream of his. During the story he had another five-second seizure. This was a bit unusual but not that unusual unfortunately. After another couple of these seizures, a bigger full minute long one broke through and Lisa gave him another half-shot of diazepam. Should we have given him the full one earlier? Who knows? The trouble with the anti-seizure drugs is the side effects; horrible things like lung collapse can happen if you overdose in a short space of time. So we had to sit it out and wait. He had another couple of small ones but managed to eat his breakfast and get on with starting his day. At one stage, I managed to get him to try sleeping but after a few minutes of that, he was bored and wanted to watch TV. Sleeping can be a great way of getting the brain to recover but if Fred doesn’t want to do something there is no point trying to convince him otherwise.

 

My trip to Cork was to meet with Fred’s neurologist and the two girls were coming along to go shopping. By the time they were ready Freddie was ready for sleep again and we left the two under the blanket, not knowing what was ahead of them. Every now and again I called, not wanting to disturb but just wanting to check what was happening. The reports were good, he was sleeping soundly and my worries began to ease.

 

In the real capital, I left the girls to go about their business and I went off to browse Connolly’s second-hand bookshop. But I couldn’t think in there, my mind was elsewhere, sure I knew he was in good hands, the best in fact, but looking at books just couldn’t be done. The words on the spines meant nothing; I couldn’t think of a single author’s name or book title I wanted. Disappointed and confused I left, nodding at the owner as I went out the door. No sale from me this time. Off I went to meet John Cousins for lunch, a great friend from school…second class, Mr Farrell’s, 1974 and he still makes me laugh today. The lunch was just what I needed, a laugh, some great conversation and a change to my usual routine. Unfortunately, time was against us and by 1.50, I had to rush off to meet the doctor. John walked me to the car park, I don’t know if he sensed my mood had changed but it felt like he was minding me, making sure I was ok.

 

At CUH the usual queue was forming to see the neurologist. A little kid, Cian, was waiting to be seen. He’d been in the hospital when we were in-patients a couple of years ago because he was recovering from brain surgery. His epilepsy had been much worse than Fred’s and needed immediate surgery. Apparently, he’s made a full recovery and seeing the little fellow run around without a care was a delight to see. It also gave me hope.

 

The neurologist was a bit surprised to see me on my own but it was one of the better meetings we’ve had. Not having the stress of driving all the ways toCorkwith Fred and trying to keep him occupied while waiting for the appointment was a great relief. Twice before he’s had seizures on the way back from an appointment, one particular night being one his worst. So not having the worry of Fred kept my mind at ease and focused on what was needed to be said.

 

The neurologist too seemed more focused. We discussed the current situation, the current medicines and the path we were on. Freddie’s recent seizure patterns were explained in detail and I didn’t leave anything out. Lisa and Fred were relying on me here, I thought to myself. The subject of the PET scan  was brought up…she apologised that it hadn’t yet happened but explained how a PET scan for epilepsy was different from other PET scans. That was why she was holding out for the one in CUH, the consultant was experienced in epilepsy PET scanning and wanted to have the machine right for Freddie. Because he wasn’t yet happy with the new machine being suitable for Fred was why he hadn’t yet been called. It will happen and happen in the next three to four weeks. We looked each other straight in the eye, I told her we trusted her and was she happy with what he was saying? The man’s credentials were excellent she said and she trusted him completely. While I hate waiting and I told her so, the reasoning seemed logical…the wait goes on, for the moment at least.

 

Back home with the girls and Freddie was as bright as a button. He’d slept a lot of the day and was the better for it. As the girls ate their dinner, he sat between them on the couch, his favourite women on either side. The girls had chicken nuggets and chips for dinner, Fred helped himself to a few spare chips.

 

For once he wasn’t mad for chips, another favourite treat…the reason being he was full of creamy mushroom pasta, he hadn’t forgotten that Mummy had made a big pot of it the night before and had two bowls for dinner…

 

Nothing wrong with my little man’s memory!

 

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Posted by John Verling

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