They are not big seizures, just a few minutes long but they are tonic clonic ones, which involve every part of his body. Afterwards he is completely exhausted and needs to sleep.
|Description of Seizures|
Since his Vagus Nerve Stimulator was implanted a year and a half ago, his seizures have gone down from between 10 and 20 a day to 2 to 10 and he has even had a day or two without ANY!!!
Most of his seizures these days are through the day so I have been managing to get caught up on years of very little sleep but lately they have been through the night as well as through the day and we both very quickly become exhausted. This weekend has been particularly hard going.
Yesterday, after putting him on the bus to school, I could have easily listened to the voice from the duvet shouting " come back to bed" but being Christmas, I had so much to do.
So I found myself by 10am in the Post Office, fighting my way through this massive queue of people just to get to the store part to buy a couple of jiffy bags, brown paper and a box. As I fought my way through, people were chatting around me and most seemed in good spirits with the odd person muttering under their breath. As it was so busy there was no one to serve me but as I hovered near the cash register eventually someone spotted me and came out. After battling back through the queue and out to my car, I was seriously thinking that perhaps these presents could wait until January to be sent!!
But no, I was on a mission. I then drove to my dad's house, had a cup of tea with him while I put all the presents into the relevant bags, boxes etc, addressed them and got them ready for posting. This took me about half an hour then off I went back to the Post Office, which I drove past when I spotted that the queue hadn't gotten any smaller. I then drove into town but couldn't get a parking space close enough to that Post Office so I gave up and went home.
I then went out with the dogs for an hour, came back, jumped back in the car and headed back to, you guessed it the f**king Post Office. I was determined that this time, come what may, I was definitely leaving empty handed! I had to park a wee bit away from the damn place and after trying to balance two boxes, 3 jiffy bags and numerous envelopes, off I set. I only walked about 2 steps when I realised I hadn't locked the car, so quick about turn to "point and lock" and the jiffy bags fell off the top of the pile and landed in the middle of the road. I scrambled about trying to pick them up without dropping anything else and the whole lot toppled over! Thank god nothing was breakable.
Finally I made it there, with said packages slipping through my hands and being held in place by my fingertips to find that there was no queue. If I hadn't been bogged down with stuff, I swear I would have done a wee dance, so gleeful was I. You see, it doesn't take much to improve my day. It took what seemed like forever to process everything, which I know it didn't but in the time it took, the queue had reached mammoth proportions again but I couldn't help grinning from ear to ear as I left, mission complete.
I then headed to the supermarket for some food cos my fridge was empty and Old Mother Hubbard's cupboards have more in them than mine do. I arrived back home 15 minutes before Jack was due home and I literally collapsed on the sofa, dogs all over me, demanding attention.
But there was no time for slacking, I had to get some housework at least, done before the ankle biters arrived home making more demands on my time.
I had barely started on the housework and Jack was home. I checked his bag and read all his diaries to see how many seizures he'd had and what his fluid intake was at before I took off his jacket and hoisted him into his big comfy chair. Then Holly was home, we all had to be fed and I'd to nip out to the ATM to get cash cos my niece Diane was coming round to cut the kids hair and cut and colour mine.
Diane and her boyfriend Chris, who has just come back from Afghanistan, appeared around 6pm and she took me outside to show me what he had bought her. A Mini Cooper. OMG I was so excited for her and inside it was just so girlie, like Diane, with different coloured lights lighting up the interior, going from red through to purple. It was very cool and I told her how jealous I was and how much I wanted a "Chris" who would buy me a girlie car and how lucky she was but I think she knows :)
|Bitch! Jealous much....me?|
By the time Diane was finished with Holly and Jack, my body wants to sleep but the mind has so much more to do and I nearly nodded off while she was putting in the foils! Thank god for Granny Mac who comes on a Monday night to shower Jack and put him to bed!
An hour later and I feel more myself again. I no longer have roots, which were nearly grown out and worst of all, had bloody silver bits through it and were sparkling brighter than tinsel on a Christmas tree. No, people, I am back to my usual red with dark purple through it. Now that I have written that down, it doesn't sound right, but believe me it's GORGEOUS!
Diane left at about 9pm and about 20 minutes later my friend Emma and her boyfriend Mark appeared so I made us all a cup of tea and they had a taste of Jack's baking that he took home this afternoon. It was a mincemeat tart, very festive and quite yummy too. They left at around 10.30pm. I set up and connected Jack's feed and put the dogs to their beds before climbing the stairs to bed. The day didn't end there though as Holly and I had been sniping at each other all evening and we had words before she went off to bed.
I then couldn't sleep until I sorted it out with her and finally fell into bed at midnight. Poor Holly, she has been so miserable after splitting with her boyfriend of 2 years in September and she is finding things pretty tough right now and the combination of that and trying to be "upbeat and happy" as it's Christmas is taking it's toll on us both. Sometimes you just can't do it!
So that was my day yesterday and here I am 5 hours later, blogging cos I can't get back to sleep. The midazolam seems to have worked and Jack is sleeping peacefully.
There is still so much to do, I haven't even started to decorate the house and just the thought of it, is such a mammoth task that I just want to pull the duvet over my head and hope it will all go away. Don't get me wrong, I LOVE CHRISTMAS just not all the hard work that's involved in the run up to it when my life is already crazy and hectic as it is.
I now have to get up and give Jack his morning meds, wake Holly and see to the dogs. I need to assess Jack before I decide whether he is going to school today or not but I want him to as it's his Christmas party and it would be a shame for him to miss it but if he does, well that's just life with a child like Jack and you just have to roll with it.
Onwards and upwards :)