First, an update on this fine Sunday morning (I’ve actually got no idea if it’s fine as the curtains are still closed, but I’m going to imagine a crisp autumn day perfect for leaf-peeping).
Since the brief seizure at 4pm yesterday, I’ve had at least five further brief seizures, including a couple overnight. The feelings that warn me that seizures are brewing have thankfully been lasting longer than the seizures themselves. Equally as good, the seizures have not been as dramatic as the Dr Strangelove affairs of a month ago.
I was transferred to my own rather snazzy room (with a lime green feature wall) in the short-stay unit. It sounds like I might be released today but I don’t think I’ll be able to attend Disney on Ice with Jennifer. I told Jennifer on Friday that she is going to see Disney on Ice today, and that Elsa and Anna would be there as well as other characters. When Mam asked her later on the same day if she was excited about going to see Frozen on Ice, Jennifer corrected her: “it’s not Frozen on Ice, Grandma, it’s Disney on Ice”. Another pedant in the family, I’m so proud!
The rest of this post was written on Friday evening. I didn’t post it as I was too tired to proof-read it before I went to bed. Apart from minor corrections of typos etc, I’ve just added some new comments in italics.
Politically Long Week
This has been my busiest week since the Immigrant was discovered. Admittedly, it would be hard to be more idle (excluding seizure-induced activity) than I was for most of the 20 nights of September that I spent reclining on my back in hospital. Still, my changed circumstances mean than everything I say and write should automatically be prefaced with a “Relatively Speaking”* caveat. In that context, the week has been jam-packed.
I’ve been out every day this week, sometimes more than once! I’ve ridden shotgun to all the nursery and pre-school pick-ups. We’ve been out for lunch a few times, including one to celebrate a Very Big birthday for my one and only cousin, and caught up with some more friends and family. We’ve had a brief but lovely trip to Gibside using the hired wheelchair and we even ventured into the “joys” of soft play (although I observed mostly and couldn’t do much with the kids myself, there was definitely something bizarrely comforting about being somewhere I usually try to avoid at all costs!).
Graham and I also visited what will potentially be Jennifer’s first school next September. The application deadline is not until January but, given the uncertainties of how my mobility and energy levels will pan out over the next couple of months, we thought it best to strike while the iron is still able to move.
Our first family-of-four trip since August was a lovely outing to buy Leo’s first shoes on Thursday. Ideally, I probably would have waited until he was consistently walking further and steadier before buying his first shoes. However, I really wanted to be there for the occasion and the unknown of post-surgery fatigue and mobility makes it too much of a risk to wait. Further, our boy is walking more than 10 steps at a time, including pauses to squat down and pick up toys from the floor, so he might not be far off the textbook time to buy shoes (whenever that is).** Jennifer was as proud as punch to be helping us choose Leo’s shoes, so for that reason alone it was the right decision and a very special family moment to savour.
As an update on my side of the Mother v Son Strolling competition, I’m pleased with my progress. I have walked a lot more over the last few days and have felt all the more energised for it. I think Leo’s going to be streets ahead of me soon but it’s spurring me on to try to keep up with him. [Leo is definitely ahead of me after recent seizures, I am back to not being able to walk unaided for the minute!]
Shake ‘N Track
As I mentioned in One-Eyed Monarch, I’ve had some sparks and tingling in my right hand and foot. The risk of seizure during my surgery is Mr H’s biggest single concern so, being the diligent patient/supervisor I am, I thought it best to check that I wasn’t ignoring signs of seizure activity. Over the last couple of days, I’ve therefore had some calls with Mr H’s specialist team describing the symptoms.
The neurologist doesn’t think it’s a sign of seizure activity because the twitches and tingling are different from my symptoms before and during each of the hundred-plus seizures I’ve had to date. I had concluded the same but thought my recent dabbling in neuroscience probably wasn’t sufficient experience to go without a second opinion! The neurologist recommends that, if anything changes over the weekend and it feels more seizure-like, then I should increase the dose of one of my anti-seizure drugs, Keppra, by 250mg and then get back in touch on Monday. [That didn’t exactly pan out as planned! I can confirm that the tingling and sparks are different from the pre-seizure warnings I get, so I’m not sure if they are unrelated or a pre-warning warning! It’s very frustrating to have gone back a few steps but the surgery has to be the main goal. If the changes to my medication mean that I don’t have a seizure occurring during the surgery then that can only be a good thing.]
One other explanation of the hand tingling/tremors is a side effect of my other anti-seizure drug, phenytoin. At the neurologist’s request, I’m having blood tests on Monday to check whether my phenytoin and thyroxine levels are correct. The neuro nurses have access to the same blood tests system that my GP uses, so they will keep track and liaise further with the neurologist when the results come in. [This is still going ahead. My levels of phenytoin were a bit low when tested yesterday so will be checked again as planned.]
[*Relatively Speaking was an anthology produced on Broadway in 2011, consisting of three plays: Talking Cure by Ethan Coen, George is Dead by Elaine May and Honeymoon Motel by Woody Allen. Graham and I went to see it on our honeymoon. It had some funny one-liners and we enjoyed it overall, not least because we saw Sergeant Mahoney and The Voice of Marge Simpson live on stage.
**To be fair, I haven’t even bothered to check when is the recommended shoe-buying time. In common with many younger siblings, Leo hasn’t had the benefit of much in the way of textbook parenting to date so why change course now!?]