No ambulances today, thankfully, though we had a near miss when Jake tried to chop his leg off with a circular saw. He's fine-- came off with just a scratch-- though his jeans will never be the same. Everybody else made it through the day with limbs intact, so that was good, though it did mean I was unable to use any Monty Python jokes (It's just a flesh wound!).
It did rain on us today, though, so Connor and I spent most of our time inside, directing the guys through the windows because we're sweet like that. The rain, along with having one less person out there, slowed things down significantly, so not as much was done today as we were hoping, but we don't have a specific timeline so that's all right.
Connor seemed to be kind of tired and was a little bit of a rag-doll for most of the day, which while it made me a little nervous never amounted to anything. My guess is that it was probably due to the long seizure of yesterday and the Diastat (essentially Valium, for those unfamiliar with the drug) that followed. He didn't really want to play today, but instead spent a good portion of the afternoon quietly snuggling, and he was perfectly fine so long as I didn't put him down or try to make him do anything. I love Connor to pieces, but I will admit that after about four hours of sitting in a chair with him curled up on my lap, digging post holes out in the rain was starting to look really good.
We'll work on the fence again tomorrow while Connor's in school, and hopefully nothing untoward will happen and I won't have to go charging up there covered in cedar chips and cement, which would be sort of awkward as I'd probably track mud in all over the floors.
I'm really, really tired of this. Yesterday was seizure number thirty-six for us, and Connor's had to have mouth-to-mouth for all of those except for three. I've been the one to do rescue breathing on him for around twenty of those, give-or-take a few, which is about twenty times more than any mother should have to perform on her child. It's gotten to the point where I don't even think about the steps anymore; I've done it so many times it goes pretty much like clockwork. That's not really something I like to brag about.
But the good news is, that despite being resuscitated thirty-three times, Connor is still here! He inherited stubborn genes from both sides of the family.
Keep on truckin', kid.
~Jess
5 years ago
4 comments:
Keep on truckin', Connor sweetie. Stop the seizures -- they were exciting at first, but they've lost their novelty and Mom has post holes to dig, and school receptionists have this way of looking disdainfully over their glasses at trails of cedar chips in the hall.
Oh my goodness! I hadn't checked your blog in a day or two.. I'm sending more prayers in your direction. I hope his neurologist can figure out a good solution soon!
I hope you get all of your post holes dug, without any need to run down to the school today. Thinking of you guys!
Thinking about you guys...
-Julia O'C
Jess, sorry i could not read all past posts to gather this information, for how long has Connor had seizures? Our doctor suggested that they'll try different drugs on my son to control his seizures before going to the next option for ketogenic diet.
btw there are also other options like surgery and the use of vns.
If the location from where connor's seizure could be detected then surgery could be an option
in my son's case its triggered from both ends of the temporal lobes so surgery was ruled out.
And Sripathi had a seizure last evening, we have informed our neuro's nurse. They are yet to call us back. wonder what would be their approach now.
good luck and prayers to find the right solution to control our sons seizures.
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