Sorry…….it’s been a while. Life, for whatever reason, seems to constantly get in the way.
Christmas has been and gone. While we had, for the most part, a great Christmas day, it was marred by my elder daughter feeling very ill in the evening with her IIH (Idiopathic Intracranial Hypertension). We very nearly called the hospital, but in the end, didn’t.
The following day (Boxing Day) we were all as a family supposed to be going up to Burton to see my mother-in-law, but because of how unwell my eldest was, we decided it would be best for her to stay here with me, while my wife and my youngest journeyed north.
Looking back, it was a good call, as my eldest became very ill later on Boxing Day, which culminated in us having to go to the hospital, eventually staying over into the next day.
Things were not going well. To top off the taxi ride to the hospital, the uncomfortable fold down bed, the continual worry and the lack of sleep, I was at the time struggling with two broken ribs, picked up in a hockey match on 20th December. I should point out that I’m a stupid man, who is seriously too old to continue to chase the stupid ball around with his stick on the pitch, however much I enjoy doing so. My ribs have pretty much healed now, but I have yet to rejoin my team mates and take to the pitch. Soon!
We managed to struggle through the trip to the hospital but I’m not really sure how, and made it to the appointment with the neurologist two days later.
My darling daughter had the dosage of her medicine increased, with a view to seeing if that would make any difference. It hasn’t. Gradually, from sometime around September, she’s been getting worse. The state of her one overall headache, which she had had for a year and a half now, has gone up, with December being a particularly bad month. The headaches have started to wake her up in the night because the pain’s been so bad, and she’s been so rough she’s had to have days off school, on top of the fact that the best she can do at the moment is four half days anyway. Our next appointment with the neurologist is this coming Monday, and as far as I’m aware a change of medication is imminent. I find it difficult to know what to think. On one hand, a change is good because something HAS to be done. Day in, day out I watch her struggle, sometimes from the moment she gets up, sometimes much later on in the day. She does try to hide it, but as someone who spends the most time with her, I would say I’m pretty good as spotting when she does. It breaks my heart to see her constantly in so much pain, that and the fact that she gets down when she can’t go to school and see her friends. She deserves to be a normal child, doing normal things…spending time with her friends at and outside of school. But it’s difficult with everything that she’s going through. As parents we try our best to support her and let her do the things she wants. But it simply isn’t always possible, leading to frustration on both her, and our part.
The bad part in the change in medication is that as far as I’m aware, it’s just one step closer to her having to have a shunt fitted into her head.
Nobody wants that, not the neurologists, us her parents, or indeed her. The further down this road we go though, the closer the spectre of that treatment gets. I hope with all my heart it can be avoided. Some of the IIH forums that we belong to very often show other children with shunts, normally having issues, and I suppose because it’s a forum, then you’ll mainly see the bad things and it all scares the living daylights out of me. Many doctors have already told us that most children go on to live a normal and fulfilling life with a shunt fitted, but I find it very hard to believe that. Other doctors have told us a very different story. I’d be lying if I said it didn’t constantly play on my mind.
January came and went, with various bugs ravishing members of the Cude household. My lovely younger daughter was hit by something and became very ill for a week, involving trips to the hospital and doctors. In fact, three hospital trips in 24 hours, which if I’m not mistaken, is something of a record for us. This all happened in a week where they were doing particularly wonderful stuff at school and she was devastated that she couldn’t go in. It always makes me incredibly proud that both my children love to go to school and work so hard when they are there. I think they probably get that from their gorgeous mother.
As for me, well I’ve been working hard in the small moments I can find to do just that. My third book, ‘Bentwhistle The Dragon in A Twisted Prophecy’ is just being edited, I’m trying to sort out the cover for it and I’ve started writing the fourth book, the title of which has already been decided but I’m not going to reveal it, not just yet, anyway.
Anyhow, that’s where I’m at. Editing as fast as I can, trying to sort out the latest cover, while writing the fourth instalment when time allows, all the time looking after two fabulous children and one wonderful wife. If time could somehow find a way of wrapping itself around me and allow me a little more of it to do the things I love, writing, hockey, etc, that would just be super duper. So if you’re listening time……….you know what to do.
Until next time.