Let me get right down to it. It's the end of April tonight as I write this, but I'll be posting it tomorrow, which will be the first day of May. And allow me to be as blunt as I can...I expect May to suck giant ass.
Did you know that the month of May might have been named for the Greek goddess Maia, who was identified with the Roman era goddess of fertility, Bona Dea, whose festival was held in May?
Did you know that May is National Salad Month, National Egg Month, National Barbecue Month, National Hamburger Month, and Fungal Infection Awareness Month in the U.S.? Did you know that Harry Truman was the first president to have been born in May?
Of course Mother's Day is always in May, but did you know that in the United States, Military Spouse Day is observed on the Friday preceding Mother's Day?
My own mother was born in May...now THAT I know you didn't know.
Gotta admit, it has always bugged me that my Mom's birthday is in May and so is Mother's Day, because it means that she gets two gifts from me in one month rather than having that spread out over two different times. Would be cooler for her I think if she got something in May, then got something again another month other than Christmas, know what I mean?
So as we enter the glorious month of May, Bennett is still seizing away. Despite the fact that we are on a HEAVY dose of Topamax and getting to a heavy does of Keppra. Why is he even ON this shit if it isn't working? Why can't anybody tell me when it is supposed to work if it is actually GOING to work? Why is it so freaking hard to get in touch with anybody from the Hospital he is receiving his treatment from?
And the seizures have been changing. He used to always, without fail, have them like this...Get sleepy, lay down for a nap/night-sleep, then fall asleep, then wake up 5-10 minutes in, have a cluster of seizures, anywhere between 12-100, then fall back to sleep and have his nap or sleep through the night.
Now, as of this past week, the seizure activity can start without him even being asleep or nodding off. One night this week he had them in the bathtub during a bath while he was giggling and playing and did not appear tired at all. Another evening he was playing, standing at his little musical center, I noticed him jerk for a second, then yup, sure enough, had a cluster of seizures. (EDIT: As of this morning, first time ever, had them when he woke up in the morning, a small set in bed with Jen...never happened before.)
For a while he had stopped doing the 'I'm irritated as shit' sounds he used to make during the seizures. Those have come back some of the time, while others he can still possibly giggle during his space between each seizure. And while the anti-convulsants seem to have affected his arms going outward as much, holy SHIT sometimes his head jerks downward so suddenly and so severely that one time I picked him up to move him and felt the force of it on my chest...it was intense. Gotta be doing a number on his neck muscles and joints.
I used to have the seizure style classified by type in my recording of the data. Nutshelling it...'Type A' was the full jerking head arms flying out, 'Type B' was a sort of milder head nod and 'Type C' was a type where he just would not be there, a staring episode with stare/look around then stare/look around. I haven't seen a C in a long while, and now I would say that almost every set of clusters is an A/B combo...it's pretty consistent that way now.
So why is May going to suck?
We made an appointment with a Dr. Chugani in Detroit for the 3rd, 4th and 5th of June. That was the soonest we could get in to do a bunch of tests and get a second opinion about Bennett by someone who is considered world renowned as far as knowledge of the condition. But since that time, it seems like the team here has sort of stopped being involved in continuing to treat Bennett.
That may not be true, just might be my 'parental perception', but it just seems that way. Especially since not a single thing that was supposed to happen in May with the local group (an ophthalmology appointment, an EEG, a meeting with a new Epileptologist, any follow up appointments or even checking in) appears to still be happening. That, coupled with some work-related nightmares, my own anxiety issues, and an increase in allergy-related crap that this time of year always brings I get the impression that May is going to be a very, very difficult month.
So bring it on May...you bitch. Not like I haven't been waiting for you. Knew you were coming. Can't say I'm thrilled about it, but you might as well start kicking me in the ass and slapping me in the face and kneeing me in the balls and get it over with. I'll survive you, I'm certain of it, and you'll smack me around pretty good I'm sure but I'll get some shots of my own in on your sorry ass so we might as well just get this whole thing started as soon as I wake up in the morning.
I'll be waiting for you.