It’s been a busy summer. Weddings, Vanagon trips, and a roundhouse of visitors – Mark’s family, my family, and a few close friends all came to stay at some point. I very much enjoy the companionship of visitors. Fits my social-hermitude approach to have people stay at our home. In our next house we are getting a guestbook and I hope everyone who has ever stayed with us will do so again. The best part about people coming to stay is that somehow it makes everything feel so manageable. So normal. A temporary pancake of burden shared across many shoulders. That’s a weird image. But the muffled heavy fluffy feeling I carry these days…it’s just like a pancake I tell you. And eating pancakes by yourself should just never happen. So it’s been lovely to have seen many of you this summer. I can’t thank you enough for treating Lydia like any other little girl and enjoying, really enjoying playing with her. Now how can we move England about 5,000 miles closer? And get that high speed train built between here and Salt Lake?
When our visitors left, we adjusted two or three things in Lydia’s medical regimen and her seizures shot up to over 60 a day again. I’ve been depressed over it. And that’s where I’ve been. In my foxhole. Haven’t checked facebook or email in weeks. Sorry. But you understand. I’m also taking up all my computer time with this Disney game called “Kitchen Scramble.” It’s addictive and distracting. Probably just what I need since I’m not into alcoholism or heroin.
The other thing that has been sucking up my time is Redfin. It’s a real estate website. We are looking for a new vision for our family and a new house as the background. Wheelchair accommodation is on the checklist. Thinking of the future is so incredibly difficult and uncomfortable. What if this new house is where she dies? I feel like we are buying a sarcophagus. It’s hard to choose a sarcophagus to live in. It should be perfectly beautiful and peaceful, but we don’t really want to buy a sarcophagus. We have to live in it, make our messy wonderful lives in it. Make a living home. Think about the future – ugh. When I look at her I don’t understand at all why she is so different. Why her brain is so WILD. Hypsarrythmia. Electric brain hiccups. How do you choose a perfect setting for that? We’ve seen a hundred houses in this city and just can’t settle on one. Our realtor is incredibly patient.
Also though, the depression really has nothing to do with her. I mean, it was there before. I try not to blame the circumstances or people outside my head. Recently we drove the long road to grandma and grandpa’s house. Jack ranged from happily playing in the backseat to kicking and howling “let me out!”. Neither made any difference to the car hurtling onward. It was a long, long drive (765 miles!) and we couldn’t stop. I can relate to his trapped feeling and I suppose the same coping techniques could apply to both of us – distraction inside the car (playing legos), distraction outside the window (playing I-spy), thinking of the positive (we’ll have a treat when we get to grandpa’s house), snacks, napping to pass the time and the occasional rest stop (I went on a yoga best-friend retreat a couple weekends ago…heavenly). But sometimes you just get that panicked, frustrated, inconsolable need to get out and all you have is howling. I suppose it is to be expected. For both of us.
One last random but necessary thought before giving the status updates on Lydia – We are very lucky to have the friends that we do here. Especially with family living so far away. It’s the small, weekly, reliable gestures that have made a big difference in oh, the time we get together as a couple, the time we take for our selves, the time we spend seeing friends…getting through it gracefully. So thank you so much. So very, very much. Miss M I am looking at you particularly on this one.
A) VNS was placed March of 2014. Pacemaker for the brain. No effect yet. (Have I even posted photos of the cool gnarly scar?) We’ve been increasing the voltage every 3-6 weeks and will be at maximum strength in the next few months. Possibly the adjustments have been the cause for her increase in seizures though it should be temporary if that’s the case. When we are at maximum strength they can vary the on/off time so that it gives her a ‘dose’ more frequently. Might still work…
B) Keto diet initiated Nov 2013. She had a seizure spike of 100+ a day during Dec, Jan, Feb, then things levelled out at around 50 a day by April. However, 9 months on the diet and she was still having 50 seizures a day so I requested a wean. When we got to a fat to carbs ratio of 2.8:1, her seizures went up! Damn. I don’t know if it was the VNS adjustment or the keto wean so we are holding steady with the keto diet at 2.8:1 for now. We’ll try to wean again in the spring when the VNS is at the maximum. No reason to keep her on the diet (mostly vegetable oil) if it’s not making any difference. Then again I’ll take 50 seizures over 70 any day.
C) Marijuana oil. I made an oil! Inactive (not heated) THCa from Cannatonnic. Spent four days giving her a few drops every 4 hours. I’m totally legal here, by the way. We’ve got her card and all that. Anyway, her seizures increased slightly and she had a few ‘weird seizures’ where she squinted and snorted. So I stopped. I’m not sure if I gave her too much, if it was due to the VNS/keto diet adjustments, or even if it was related at all. The oil I made should have been too weak to have much effect at all but I haven’t had it tested. I’m just too tired. I was hoping for an instant cure but clearly this needs more thought and experimentation. If we are going to pursue the mj option then I need help. Possibly to the tune of $1500 from a company out of Eugene. (Hell, we should feel lucky, they originally asked $10,000.) Also, this is our last chance for awhile before Pharmaceutical February kicks in and we have drug interactions to consider…
D) Pharmaceuticals: I’ve sort of been holding off the medical drug trials this summer in order to experiment with mj but I just ran out of steam. Got burned out from the effort. Our neurologist agreed to wait a few more months before bringing out the next round of crazy drugs and their side-effects while we are ramping up the VNS. Clearly I am not looking forward to it. But what else is there besides pharmaceutical roulette at this point? and if we wait until she’s two (next March) then her liver becomes fair game and we can try the big guns like Depakote. So sometime in the spring/early winter we’ll start her again. I want to have one last Christmas with her in relatively au natural brain chemicals. Honestly there are a few more medicines I want to try for her but I think I have to call it at some point, maybe when she’s three, and let her be how she’s going to be without all the horrible side-effects and do what she’s going to do and die when she’s going to die.
I’ve got to stop thinking about her death. Right? Suuuch a downer. And she’ll probably live long while longer than anyone expects. She’s quirky like that.
Anyway, there’s more to report but it will have to wait. For now, it is nice to be back on the blog again. I’ve missed talking to y’all.