I’ve spent many hours at the computer this weekend, but almost none of them on my blog, so here’s a little update on life at the mo’.
Jade’s still having around 20 seizures a day, but her mood has been improving. For the past week or two, she’d been behaving manically, swinging from happy to tantrum and back at the drop of a hat. Very frustrating to live with. We think it might be the Clonazepam and the neurologist suggested cutting it back again. We’re also upping the valproic acid again. The latest blood tests showed the drug has finally reached the “therapeutic range”, although it’s still at the low end. We’re keeping our fingers crossed for improvements in the next little while.
We found out at the end of last week that our referral with the epilepsy specialist, Dr. Hah, will happen soon! The appointment is set for next Friday and will be with both her and Dr. Demos. They wanted both Michael and me to be there, since we’ll be discussing a number of things, including a kind of orientation to the ketogenic diet. Since it takes a big commitment from the family for the diet to work, it’s important that we all be involved. I was worried that Yukon Health wouldn’t allow both parents to go (normally a child is allowed just one “companion”) but apparently they will cover travel for both parents if it’s “medically necessary”. The paperwork’s been submitted, so I just hope the evaluating doctor doesn’t think it’s not necessary for both of us to be there. I’m sure one of the reasons the referral happened relatively quickly is because of Nugget. By the end of October, I’ll no longer be allowed to fly. I’m so grateful to the BC Children’s Hospital for doing everything they can for us.
In the meantime, my own energy and mood still tends to rise and fall with Jade’s condition. Leaving work a little earlier than the end of October is looking more and more appealing. However, I have a couple of commitments that I really need to meet. I have a report due for my biggest project at the end of this month. Which would be, uh, tomorrow. Which was why I spent almost 18 hours at the office this weekend. However, since I spent the entire time in yoga pants (!) and there were no people distractions I was seriously productive. (Between that and your encouragement, I believe there will be another pair of office-worthy yoga pants in my near future. I mean, these ones have to be washed sometime.) Michael was awesome being pretty much on his own with Jade all weekend. I missed being with them, but I’m so looking forward to getting this report D-O-N-E. It’s been a huge source of stress for me.
Michael’s folks were supposed to be visiting this week but they had to cancel because Michael’s Pop was in the ICU in Mississauga, unable to breathe on his own. His mom has been there for the past week, being with Granny (who has lung cancer and just recently got moved to a care facility) and Pop. We were so worried about Pop and of course disappointed to be missing a visit, but things started looking up today, with Pop finally coming off the ventilator for the first time in almost two weeks. He had also been on a feeding tube the whole time and today got to eat “real food” — applesauce — for the first time since going into the ICU. Apparently he wolfed it down with relish and when Marian observed, “But you don’t like applesauce,” he grinned and said, “I do today!” So like him.
After the marathon weekend at the office, plus going in today (my usual day off), I’m definitely starting to lose steam. But things seem to be looking up, so all I need is a good night’s sleep (am I perhaps asking for too much here?) and I’m sure I’ll be good as new. Speaking of which…
Oh, wait! Did I fail to mention that we had our first snowfall of the year this morning?