Today it was back to business as usual!
We did hear from the neurologist this morning, and he's got a new medication he wants to try Connor on. However, the medication level has to be upped very slowly because the body has to get used to metabolizing it. If it's upped it too quickly it can make all your skin fall off and die. Um, ow. So Connor will be building up to a therapeutic dose of this medication over an eight week period, while slowly weaning down off the Trileptal. I don't want to get the name of the stuff wrong and we haven't received orders for it yet, so I'll wait to tell you the name of the new medication until it's sitting in my hot little hand. I also spent three hours on the phone with the insurance company, because they are convinced that our pediatrician who moved away over two months ago (I believe she is currently in another country now, so that's about as far out of pocket as you can get) is still Connor's primary care manager even though she doesn't have any appointments available and obviously is not commuting to the hospital. That would be a long commute. So they won't assign us another one until we can prove that she is no longer here. And we have at least three appointments we need to make with specialists, which require referrals from said pediatrician. Also we have eight billion pieces of paperwork we need signed, also by said pediatrician, for school. And did I mention that school starts in a month? Glorious.
So anyway, to cheer me up after all of the hoops I had to jump through, we went to the library today and I let Connor pick out a new theme box for the week from a couple of choices. He pounced on the "Fun With Music" box, and when I started pulling things out of it at the library to make sure they were all there before checking it out, he got really mad that I wouldn't let him play with the super-fancy keyboard (which I discovered when we got home is the Loudest Keyboard In The World) immediately. So he started shrieking at the top of his lungs. Still in the library.
We checked out really quickly. Connor trumps the keyboard in both the volume and the nails-on-chalkboard categories.
Then Connor and I sat down together outside and had what was probably a totally ineffectual conversation on appropriate behavior in the library. And then we went on the swings, because they were there and about halfway through my lecture he stopped paying attention and started asking for swings instead. I am completely incapable of denying my child something if he goes to all the trouble of asking for it, even if it is during my lecture about playing The Loudest Keyboard That Ever There Was in the middle of the library (though I guess I did deny him the keyboard, so maybe I just thought going on the swings sounded like a good idea). Oh well. He had a great time on the swings and burned off some energy, and then as a result I was able to actually go sit down with him in Central Perk-- one of my local haunts-- and read one of the random books I'd managed to grab off the library shelf as I rushed past with my firetruck-imitating child towards the check-out station. It probably helped that I stuffed the kid half-full of gooey warm brownie as I was reading.
Yes, I was a virtual paragon of fantastic parenting today.
Anyway, then we went home and surveyed the sheer awesomeness that is now our front lawn, which put me in the best mood ever-- even a better mood than I was already in from the swings and the reading and the brownie and whatnot. See, when we bought this house it was for three reasons:
1) It was in the Puyallup school district.
2) It was a rambler.
3) It had a bathroom that could be converted for wheelchair access.
That was it. We didn't buy it because it was in a good neighborhood or had a layout we were particularly pleased with. It was one of two houses we had to choose from in our price range that fit the criteria above in the entire city of Puyallup when we needed to buy, and nothing else-- even whether or not we liked the house-- had anything to do with our purchase. Which is a really weird way to buy a house, if you think about it.
So anyway, we totally lucked out, because not only is our house now the most awesome house in the world and quite possibly the universe thanks to these people, and also these people, as well as all of these people, but our neighbors are also awesome. I'm not just talking about neighbors who will wave at you when you go by in your car, stop on the sidewalk to talk to you, invite you over for dinner and barbecues, and even do a bunch of weeding and take your yard waste to the dump for you. They do all of that awesome stuff, of course. But these are neighbors that are so incredibly awesome that when they find out what an unbelievably horrible month you've been having and that you're having trouble keeping up with the front yard because you are spending all of your free time attempting to use massive amounts of chocolate to induce an amnesic state or possibly a coma as a defense mechanism instead of doing chores, they have people come in and clean up and mow and mulch and weed and trim and put new stone down at the curb and make your yard look about 8,000 times more awesome than it has since you moved in, and possibly better than it ever has in the history if its existence. Yes, we're talking that awesome. And then they refuse to let you pay for anything. See how awesome our neighbors are? I believe they are off the scale. I would take pictures of it for you so that you can see just how amazing it looks right now, but then there would be pictures of the front of my house on the Internet. So you'll just have to imagine the awesomeness.
So anyway, how's that for a fantastic day? It involved the library, swings, a coffee shop, brownies, seriously awesome neighbors, a great looking front yard, and, maybe best of all, a happy, relaxed, seizure-free child.
Things are looking up!
~Jess
5 years ago
9 comments:
Fantastic day, especially about your front lawn. And the absence of seizures, of course! Wishing you many more seizure free, swing riding, book reading, brownie filled days to come . . .
What great neighbors! Here's to the new medication taking effect quickly (but not too quickly, with that whole skin-falling-off side effect- egads).
Perhaps Connor needs The Loudest Keyboard That Ever There Was for Christmas.
Your brother wants both a picture and a dang birthday list emailed to him.
So glad to hear it -- you *really* needed a break and a boost. And while I don't mean to take anything away from the total awesomeness of the neighbors, let me suggest that even the best neighbors in the world probably wouldn't go to such lengths for just *any* family. I'm guessing that the good neighborliness is mutual. And have another brownie.
And get back to your brother -- he sounds a little impatient.
I've been reading along for a while and I just wanted to say a few things. I really enjoy reading your writing and hearing about all the adventures your family gets up to (from good to bad). I think Connor's new seizure med is probably my Drug of Choice (TM) (it has two uses in adults) and my skin hasn't fallen off. I hope it works out well for you. Finally, (since I'm a total stranger on the internet and my opinion therefore matters) I think you're a great parent. You dream up and implement so many cool activities for Connor, even when he thinks they're torture. I hope I can show that kind of love, dedication, and inventiveness when I have kids.
I left a birthday list with Mom, but I'll e-mail you one too. Hey, can you blame me? I've been a little distracted. Besides, I'm sure whatever you come up with will be about 8 billion times better than the present I got you for YOUR birthday, which in retrospect was really lame. But hey-- my rational thinking goes out the window when I've eaten that much chocolate, and at the time three months of barbeque sauce sounded like a really great idea. Sorry about that. I'll make it up to you by sending you something dinosaur-related.
I'll e-mail you a list. Feel free to get me a three-month supply of toothpicks or something.
The photo will have to wait for a sunny day.
~Jess
Oh, and thanks Jennifer! And leah, and xraevision! I had to answer my brother first because he is my younger brother and will pester me mercilessly until I do what he says. Except he's been asking for a list for about three weeks now, so he has every right to be ticked. And I totally wish I was kidding about the barbeque sauce.
"a happy, relaxed, seizure-free child"
Hurray!!!
I've found with those obnoxiously loud toys, that a piece of clear mailing tape over the speaker does wonders for my sanity ;oP
Julie
Wow! Your neighbors really are off the charts. Good for you!
Your boy is a cutie pie!
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