And So We Begin Another New Year!!

I am hoping you all had a happy and healthy Christmas and New Year. Unfortunately, like many others, our lead up to Christmas didn’t go quite as I had planned as both myself and then my husband were unwell. Unwell to the point of not leaving the house for 6 days to finish my shopping. Thank goodness for online deliveries.

I also sadly missed catching up with friends in the week before Christmas and couldn’t attend James’ day service Christmas Carols. Fortunately, Grandma and Auntie Joan were able to go so James wouldn’t have felt my absence too badly (if at all!!).

As Christmas approached it would be fair to say I wasn’t feeling it, however as Christmas was going to happen whether we felt ready or not we rallied and got stuck in. Darryl picked James up from his house on Christmas morning and then together they went and picked up my parents. I was so on top of things in the kitchen I felt sure I must have forgotten something. I don’t think I did and if I had then no one realised or mentioned it.

When it came to dinner James was somewhat reluctant to eat his but he sat patiently whilst we all ate. However, when pudding came it was a different story and that disappeared in minutes. Once pudding is done with he is always impatient for the table to be cleared so he can get back to doing his puzzles….with Grandad’s help of course. Though to be fair he did give Grandad a break now and again whilst he tolerated the rest of us but he’s always got one eye on where Grandad is! We must have told him 20 or more times that Grandad wouldn’t be long when he stepped out with Darryl and my youngest for a breath of fresh air. 

Normal service resumed and James was stuck by Grandad’s side on his return and we sat down for some presents. Tradition in our house is that James and Grandad always sit in one specific spot and Grandad gives James a hand as needed with his unwrapping. It’s taken many years for James to be interested in opening his presents but finally he is and he couldn’t have been happier as he snuggled up with Grandad and patiently waited for presents to be shared around. He listens as I read the name on the labels and he’ll point to the relevant person beaming when I say his name. 

James was sleeping over so after he had some tea he happily went off upstairs with his dad for a bath and to get into his PJ’s for the rest of the evening. Even long after Grandma and Grandad had gone home he was still going strong until I eventually managed to persuade him it was bedtime and it wasn’t long before I followed. I knew it would be an early start the next day.

Predictably James woke early. I snuck into his room in an attempt to occupy him for a while allowing Darryl and Harry to sleep a little longer. Not everyone wants to be up at 6am. It was a good day though and we managed to get out for some fresh air in the morning before Darryl and James set off to pick up Grandma and Grandad. I always enjoy boxing day dinner, cold meats, mash and pickles with plenty of bread sauce. James was far more enthusiastic about his dinner then he had been the day before. 

James was sleeping over again on Boxing Day but as myself, Darryl and Harry had a long car journey planned the following day, when James woke early I again snuck in his room leaving Darryl to sleep for a couple more hours. Don’t get me wrong I was absolutely shattered myself but one of us had to be fit to drive. We took James home at 11am. It’s still strange taking him home after he has stayed with us even though this April it will be three years since he moved into his own flat. It’s harder when he has had a longer stay too. I was really ready for a rest though and looking forward to sitting back in the car with my eyes closed and nothing to do for a few hours. James was fine, he settles back into routine quickly and he happily said “bye bye” when we left him. 

Having had a couple of days back at day service and a lovely day out with one of his staff James was back with us on New Years Eve. As he was up at 6am it’s a long old day, but for many years now he has stayed up with us and sees in the New Year. If he had been flagging at all he was buoyed by the arrival of his Grandparents and Auntie Joan and her partner. He kept going until I told him it really was bedtime at 1am. As much as I’d told him he needed to have a really long lay in the next morning…he woke at 7.10am.

And so the New Year was upon us, 2024 was not going to start smoothly……how silly of me to expect it to, you’d really think I would know better by now. Once up and dressed and having had his gastrostomy feed and medication James wanted to go to the table and do puzzles. He led the way and I followed. I say followed like I was a willing participant. I may have been somewhat reluctant but I obliged. Clutching my black coffee. Not because of any excess of alcohol the night before….   quite the opposite as I hadn’t drunk at all over the holidays. I can’t cope with the lack of sleep and alcohol these days. Oh, to be young again!!    

So, here’s the point that I realised my day wasn’t going to go as planned. I looked down as we got the first puzzle out and James’ hands were red with a rash…a rash that has definitely not been there the night before. My first thought was that it might be a reaction to new medication James had started just 12 days before. I had been warned to watch for any rashes or allergic reaction and advised that should that happen James would need to stop his medication and I would need to speak to the doctor immediately. Oh, just brilliant…it’s a bank holiday that wasn’t going to be easy.

As James has recently started having seizures again, the neurologist prescribed him Lamotrigine. I had a long discussion with the epilepsy nurse about this and what I could expect. 12 days in I thought it was going well but she had said it can take between 8-12 weeks for someone to have a reaction and whilst it was generally well tolerated any reaction should be acted upon as it does have the potential to become serious. Needless to say, much of my morning was spent trying to contact 111 and then many hours later, long after we had taken James home, I was still waiting a call back from a doctor. At this point his staff were needing to know whether or not to administer his next dose.  As they have strict guidelines to follow they can’t withhold prescribed medication without the guidance of a medical professional. They too contacted 111. A couple of hours later they did get a call back. I got one too, 10 hrs after I had previously spoken with them. The upshot was that the Dr felt it unlikely to be an allergic reaction to the medication as the rash was restricted to his hands only. It was suggested he have that day’s dose and we follow up with a call to both the GP and epilepsy nurse the next day. And so, we are continuing those discussions currently to see what the outcome will be.