Self Prescribing Some Wine for my Whine

My frustration and irritation level is way up this week. We’ve been looking at the possibility of reducing the price on our home since we’re getting so many looks, including three second looks, but no offers. Then we got the heads up that another jerk in the neighborhood is going on the market this weekend priced almost $10,000 less and with a bonus room we don’t have. So we preemptively dropped the price and are hoping for a miracle before they hit the market. And unlike the other house that went on the market in our neighborhood that is under contract despite rotten wood and a lousy yard, this one actually has great curb appeal. Oh, please let it be a brass-infested wonderland inside. And if they go under contract first and accept an offer below a certain price point, we’re screwed and stuck where we are.

We had some people view the house yesterday that reportedly loved it. Except they have a second child on the way and they want more room. I’m not real clear on why they looked at all. Stop getting my hopes up, people!

Then, to top every thing off, Connor’s neurologist called yesterday with the results of his EEG. The stupid tuber in his left occipital lobe is acting up again. It has put out spikes before, but apparently Connor is having subclinical seizures again. Those are seizures that have no outward appearance, but show up on EEG. The tuber he had removed when he was four months old was causing him to have a couple subclinicals an hour, plus a handful of clinical (ones we could see) a day. We haven’t seen any on EEG since then. Yay. Here we go again. He assured me that this was nothing like when Connor was born but he did see more than one in the eight hours. Mother F. When we started him on Trileptal, we upped the dose once per directions, but never upped the second time — per directions — since we weren’t really seeing anything anymore. So now we are upping and will have another EEG once Connor is totally off the vigabatrin.

I’m just really baffled by the whole concept of a subclinical seizure. I know what the technical definition is; I just don’t get how it affects him. Yes, I understand it’s not good to have funky brain activity, but if he shows no outward signs, how is it affecting him? Like, if I had one right now, what would it do? Does he feel something we can’t see? Connor is happy and progressing, but would he be progressing faster without them? Maybe. Or would it even matter because so many factors go into delaying a TSC kid? If by some crazy chance, someone with epilepsy reads this and has subclinicals on their EEG, if you could enlighten me to your experience…

UnknownSpeaking of progression, here is an area where he is fighting us tooth and nail. The bottle. I cannot get that kid off the nipple. He doesn’t care what style or shape the cup is  — he’d probably even drink out of Flavor Flav’s chalice — it just better have a nipple on top. The hard plastic sippy cups inspire instant anger and hurling of the container, so we tried the sippy cups that are interchangeable with his bottle. We can either have the sippy cup mouthpiece or the regular nipple. He hates this sippy cup mouthpiece a little less because it’s pliable like a nipple, but other than sticking it in his mouth a few times, he just plays with his bottle. His speech therapist gave us some things to try, but thus far, no luck. Maybe his college roommate will shame him away from it.

I mean, how much difference can there be?!
I mean, how much difference can there be?!

I leave you with a montage of Connor’s funky sleeping positions. Apparently some people have to plan their whole day around their kid’s naps. Not me!

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There’s even room for a beer fridge on the porch!

So that neighbor I told you about? The one the put his house up for sale? They got a contingent offer of some sort. So I’m annoyed they got one first, but at least they are now out of the running. Plus, according to my realtor, they aren’t set to close until the end of July. At least if they accepted a lowball offer, and I have no idea if they did, it won’t affect our comps. I’ll be curious to see what they get though. We attempted a walk through with our realtor, but when we got there, there was a note that said not to enter without showing instructions. Uncertain what that meant, and if there was an alarm, we didn’t go in as we were unable to get the realtor on the phone (the house is empty). I can tell you there is a lot of rotten wood on the porch.

In the meantime, we continue to have plenty of showings, but no luck yet. I’m starting to hate the Autumn Lake neighborhood near us which shares our floor plan, and has a ton of homes on the market. I know one of our weekend viewers bought one over there because it had a master on main. She didn’t even know she wanted that until she saw it. It was otherwise very similar. Stupid, stupid Autumn Lake.

We’ve had three people come back for repeat showings. Always the bridesmaid, never the bride. One of those was also this weekend. We were in her top 3…number 3 of course. She ended up choosing a house on a lake even though at the original showing, she was so afraid of snakes coming up, that she wouldn’t even go in the back. Well, alrighty then.

We went house hunting yesterday for the first time and of course I fell in love with a house. It has everything I want, though the price requires some negotiation. So far, I have been the chill one about having the house on the market, while Chris has been very antsy and agitated. Now I’m irritated. Let’s move this along already. I WANT that house. It’s more space, a screened in porch, and all the upgrades I could want.

In happier news, Connor is crushing it–life, I mean. He just got himself into a sitting position on his own for the first time a little bit ago. He’s babbling mamamamama, too. His newfound mobility has proven to be quite the life adjustment for us. I know everyone goes through this, but we’ve had 15 months to develop lazy habits about where we could set him down. Now his new hobby is hurtling himself off furniture. First it was the couch, which startled him, but he was okay. Then he made it off our bed, landed in a sitting position, and thought it was hilarious. But then it was the changing table, and while he wasn’t hurt, I think he scared the crap out of himself. I know I certainly stopped breathing when I heard the thunk. All I did was turn away to grab a diaper! So now I have to keep reminding myself that he cannot be left on anything at all even for a second.

I’m also excited that after years of trying to have kids, my friends Giovana and Damien are down in Colombia to pick up their son David. More on that when they return in 5-8 weeks…

Gio and Damien's mustache-themed baby shower.
Gio and Damien’s mustache-themed baby shower.

At least we have an efficient government…nope, couldn’t type it with a straight face.

I just want to make sure I have this completely straight. The government program we’re eligible for to help cover Connor’s insurance premiums really needs EVERY SINGLE EOB from 2012? Okay, kind of a pain, but call to United Healthcare made. Wait…you mean the program that I called on their assistance line weeks ago that never called me back? You’re telling me that a government worker who doesn’t have time to return a phone call to a concerned mommy is going to read all THIS before they can approve us?

Kinda thought these would be a little more consolidated, but hey, I'm sure premiums would never go up to cover excessive postage ;)
Kinda thought these would be a little more consolidated, but hey, I’m sure premiums would never go up to cover excessive postage 😉

 

It must be true though. It’s not like these programs for people with disabilities and health problems would ever make people jump through hoops to discourage them from applying…

Or would they?

Bsaaa hahahahaha!

 

 

When you put electrodes on my head, can you see how annoying I think you are?

“Oh good. I get a day off from having crap on my head so that I can have crap on my head.”

Connor doesn’t talk, but I imagine that’s what he would have said yesterday if he could. A whole day without his cranial remolding helmet, but he ends up with electrodes and gauze everywhere. And you might think, oh, poor Mixed Up Mommy. Having to spend eight straight hours in a doctor’s office while Connor has an EEG. Actually, I’m pretty sure nobody is thinking that, but that’s okay. As long as it doesn’t involve a check-in at Scottish Rite, I’m fine.

What? No helmet today? Sweet!
What? No helmet today? Sweet!
Oh. You weren't real clear, Mommy. Thanks for nothing.
Oh. You weren’t real clear, Mommy. Thanks for nothing.

This EEG was a little more challenging now that he is mobile. There was a lot of rolling, tangling and attempts to play with cords. But considering only one electrode ever fully came off his head, and I was able to reattach it, I consider it a victory. We read some books, played, I worked on an article and we took a long nap together on his jungle mat.

The EEG was just a check-in to see how things are going since we are starting to wean him off the vigabatrin. His spasms have been controlled since last September, so we’re hoping there’s no more need. We introduced Trileptal a couple weeks ago to see if that, along with the Keppra, will knock out the complex-partials he’s been having. It seems to be helping as they have become fewer and farther between. He had none yesterday, naturally. Overall, he’s doing well in the seizure department. Even though he’s not totally free, the few he does have are 10-20 seconds of pursed lips and staring and he snaps right out of them. I think the EEG will look as normal as it can — meaning his EEG will probably never truly come back normal due to the tubers, but that’s okay as long as nothing is going on that negatively affects him.

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Aren't you going to share your Dunkin' Donuts, Mommy?
Aren’t you going to share your Dunkin’ Donuts, Mommy?

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So sweet to share your chicken noodle with the EEG machine.
So sweet to share your chicken noodle with the EEG machine.

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That's cute that you big people think you can keep my head wrapped in gauze for an entire day.
That’s cute that you big people think you can keep my head wrapped in gauze for an entire day.

Sweet Dreams? Not Likely.

IMG_3852Now that Connor has finally decided that being on his stomach isn’t so bad, he’s rolling all over the place. If you set him down on one end of the room, I can guarantee you that he will soon be on the other. I wonder if he thinks to himself, man, if I had just realized how fun this was months ago when I first rolled over? He’s attempting to get into the crawling position, too. He also attempted to climb off our bed the other night. Maybe now, with all his progress, the dreams will stop.

I have these repetitive dreams in which he either starts imitating consonant sounds or starts saying words, and others where he starts to walk. They are, quite possibly, the most realistic dreams I have ever had. Every time I wake up from one, I spend a few moments discerning whether or not it really happened. When I realize it was a dream, I always feel profoundly disappointed and sad. But he’s getting there. He’s progressing every day.

1986 Ford Aerostar (USA) p1

Repetitive dreams both fascinate and annoy me. I’ve always had them, but they seem to change with each phase in my life. The ones I most vividly remember from when I was a kid involve cars, specifically my parents 1986 Ford Aerostar minivan. My parents bought the van upon our return from being stationed in Okinawa, Japan. We were headed to Merced, California, where we would take many drives to Yosemite and all over the west. My dreams at that time had me in the third seat of the van, on the winding mountain roads we so often took trips on, but there was never any driver. It always appeared to be just on the precipice of going over, but it didn’t happen. I was helpless in the back with a distinct sense of having no control.

My other car-related dream consisted of me sitting in a passenger seat of car of uncertain origin. Sometimes it seemed to resemble my mom’s 1966 Mustang, which she drove until 1992, when we moved to Atlanta and my parents bought an Explorer to accompany it’s Ford friend, the Aerostar (that damn van wouldn’t die for a few more years, subjecting me to the  humiliating experience of having a driver’s license but not always being able to convince my parents to give me the Explorer for the evening). It’s 2013, and the Mustang is still in the garage buried under the remnants of my parent’s children, who moved out, but refuse to come back for all their stuff. Anyway, in the dream, I don’t know who was driving, but there was a hole in the floor of the car where my feet should have gone. My stuff would fall through, and I would fight not to fall onto the pavement as it rushed by underneath.1016523_581155591950517_1902471778_n

At some point I went from cars to dinosaurs. I can probably blame Steven Spielberg for that. Dream after dream I was in some random house with other people, mostly my age, but not always, hiding and dodging raptors and–whatever that dinosaur was that nailed Newman in the movie. If I could just get to that elusive front door, I would be okay…

Around the time I went to college I started having the worst dreams ever–the paralysis dreams. I have read somewhere  that these may not be dreams, that it’s actually your brain waking up before your body–but either way, it’s terrifying. I would seem to wake up, but was unable to move or even open my eyes. I’d struggle with all my might to move from my frozen position, but it felt like several minutes before I could. In reality, it was probably just seconds, but it did nothing for my severe claustrophobia. Sometimes it would happen during a nap and I’d finally fly up off the bottom bunk, gasping for breath, roommate fearfully inching away from me.

Then came the teeth dreams that persist to this day. I discover that a tooth is loose, and unable to keep from messing with it, it ends up falling out. It has always been just one tooth until just a few nights ago when I lost three. I’m hoping that just means it’s the end of a dream era.

funny-crazy-creative-toilet-bowl-design-28Then there are the dreams of never ending frustration. One is the entirely standard “I have to take a final, but I never went to class and I don’t even know where to go” dream. Not very much original material there, except that I’m always trying to make my way from  my dorm on University of Georgia’s south campus to my class on north campus. I always seem to be on Sanford Drive, past the stadium and near the journalism building. I also have dreams where I am desperately looking for a bathroom, but no matter what bathroom I find, it’s impossible to use it without being visible to the public. Sometimes that’s because it’s just a huge, unisex room of toilets, and sometimes there’s a huge window facing crowds of people passing by. And finally, there are the dreams where I have to move out of wherever I am living, but can’t make any headway with packing. Things just keep coming up that get in the way.

Notice an unpleasant theme here? They’re all anxiety-based dreams. And I have them even when my waking life is in a state of pharmaceutically induced calmness. No repetitive dreams about Bradley Cooper, or winning a million dollars, or getting back into my size 4 jeans. Nope. Just the ones that leave that icky feeling that last through the first cup of coffee.

So tell me, what do YOU dream about?

Winner of the Dermagist Giveaway!!!

As promised, today I am announcing the winner of the Dermagist Clarifying System giveaway!

Here is a video of me pulling the name.

Does my lip always go up on the side like that? I don’t generally make close up videos of myself so I wouldn’t know. Not sure I care for that… haha.

And the winner is:

Caffeine Please at Did I Earn A Smile?

Please e-mail me at pin.the.map@gmail.com and let me know the address to have the company mail your prize to!

Everybody, please check back. I hope to have another Dermagist giveaway in a couple months!

If I Were To Unleash Termites on Someone’s House, What Kind of Criminal Charges Would I Be Looking At?

Today started with me wanting to go into a near rage. Last night we discovered a house in the next cul-de-sac over–we live in a very small neighborhood–just went on the market. We were not thrilled. This morning it was online. Bigger. Same price. I wanted to knock on the door and punch the owner in the face. Pictures didn’t go up for a couple more hours, but after driving by a couple times, and finally seeing the pictures this afternoon, I can offer the unbiased opinion that their house sucks. Sure, they have a little more space, and a little more granite, but ours has better curb appeal and better lot. Plus I emptied a container of termites onto the property. Okay, not really, but I wanted to.

The very first person that looked at the house this week was a guy that loved it. We were unable to leave as his tour overlapped Connor’s in-home speech therapy, so we just sat on the porch until the therapist arrived. After the realtor left, he even came back and knocked on the door and asked about the neighbors. Then he brought his wife back that night. It just seemed too easy, right? I was nervous about the wife, and was right to be. She is said to have liked it a lot, but thought the living room too small. Ugh, women! Am I right? They only need to be in charge until it doesn’t benefit me. 🙂

I’m feeling a little better about it this evening though as we have another repeat show coming in the morning. A person who toured it this morning has it in their top 3, so fingers crossed.

Note the orange drool hanging down.
Note the orange drool hanging down.

We met with Connor’s neurologist yesterday, and we’re very excited that we are now weaning him off Sabril (vigabatrin). This is the med he started due to infantile spasms last September. His spasms have been controlled for quite some time, and we are hopefully past that hurdle. We’re really hopeful we’re done with this med. He’s still on Keppra, and now he’s starting Trileptal since he still has what we think are complex-partials that consist of him clenching his teeth, going slightly limp (not losing consciousness), puckering his lips and staring to the side for 10-20 seconds. We see roughly 1-2 a day, and some days none. The vigabatrin wasn’t curbing those, so since the spasms are done, no need we hope. He snaps out of them quickly and they don’t have the lingering effect of other seizures and make him fall asleep.

No more mixing those stupid powder packets, hoping UPS shows up with the meds, and no more ERGs and ophthalmology appointments! Since vigabatrin poses risk to peripheral vision, anyone with a prescription is required to have frequent eye exams and ERGs, which require him to be knocked out at the hospital. Fewer trips to Scottish Rite? Yes, please!

I recently discovered that insurance is being billed $7,000 a month for this particular prescription. And herein lies the heart of why our medical system is so jacked up. We’re so worried about everyone getting insurance, that we’re not paying attention to why everyone needs it so desperately in the first place. Big profit. The jacked up cost of medical care in this country, plus the complete lack of rhyme or reason to why things are priced the way they are, and the lack of uniformity in these prices is the problem. It took a very disturbing recent Time Magazine article to even make hospitals accountable for making their chargemaster lists public. Where else do we walk in to make a purchase completely blind to what kind of charges we’ll be facing in the end?

Sabril (vigabatrin) only received FDA approval a few years ago. Before that, most people got it from Canada. A months’s supply was a couple hundred bucks (I’ve seen people mention figures ranging from $100-$500 per month on the TSC boards). Since it was not approved, it was not covered by insurance. Now, that is a heavy fee on a monthly basis, but what can you do? Insurance isn’t going to pay for a non-approved drug. Well, then it got approved. How nice! Now insurance can pay for this important med that costs hundreds of dollars. Oh, but now it suddenly costs thousands! Now, I will say the manufacturer has a program called SHARE which offers co-pay assistance, so this drug that would probably cost people like us an astronomical co-pay of a grand or more, is actually affordable. We only pay $30. Some people pay nothing. I’m not aware of anyone being turned down. But it’s still profitable. Obviously this drug costs nowhere near $7,000 if Canada can sell it for a fraction of the cost. So even if insurance cuts a deal to pay only $4,000, and the patient gets a pass with the assistance program, those are big bucks. Connor’s last 3-day EEG

Colin Farrell- sundance

cost $12k just in room and board. And I couldn’t even get them to bring him a damn band-aid.

On a different note, I don’t know what rock I’ve been under, but I just became aware of the fact that Colin Farrell’s son also has a rare genetic disorder, even more rare, called Angelman Syndrome. I had only recently become aware of this disorder due to a Facebook page I follow of a woman whose son has it. I think it’s really awesome that he is speaking out about it and bringing attention to rare disorders. He recently spoke at an epilepsy event, as seizures are something that TSC and Angelman have in common. Very cool.