Ten days. It has been ten days since we last recorded one of Connor’s eye rolling seizures with our SeizureTracker app. Yes, there’s an app for that. Just like that, after five months of this weird seizure activity and a 3-day in-patient EEG–nothing. It is awesome, and we just try to enjoy it without projecting ahead because there are no promises in TSC land. He’s so much more alert and engaged in the meantime. Even more giggly, more aware of his surroundings, and increasingly open to people he doesn’t know as well. He had his best swim class ever last week. I’ve been swearing to his instructor that my kid really does smile–I have pictures to prove it. But week after week, though he didn’t fuss or cry, he openly regarded us as dumbasses for requiring him to take an extended bath in an oversized tub to off key singing. But finally, he not just cracked a smile, but laughed and did all his own kicking without me prompting him to move his legs.
The class he has been enjoying immensely is music. He is very interested in the other babies, which is great because I want him to be inspired to crawl and move like them. First he seemed to have a man crush on Ben, but this morning a new love crawled into his life and knocked his socks off. Well, actually she crawled over and just yanked one of them off, but he was so instantly smitten by Priyanka’s bold gesture, that he grabbed both her shoulders and went in for the forehead kiss…or lick. He has made a wise choice. Mom is an ER doc. I feel good about having a doctor in the family. And if Priyanka ever seems distracted by any of the other boys, I’ve observed that I can win her back for him with my car keys.
Connor can now stand when bracing himself against the couch, which is nice. He is also firmly into the “it’s fun to throw everything on the floor” phase, which is less nice. He started speech therapy last week, and I sense some of his grumbling will eventually form into four-letter words. His speech therapist brought him some awesome bubbles that are unlike your standard Target bubbles. These don’t pop as easily, allowing him to catch them, stack them, and for me to scrape them off furniture for days afterward. But look how much fun he’s having.
Meanwhile, in adult world, I’ve been trying to motivate myself to go out more. It’s so easy to be lazy and do nothing when it’s cold AND you have a kid. I actually had two social engagements in one weekend. I felt like I was 27 again! Chris and I attended a paint and wine tasting function at a local gallery with our friends Giovana and Damien, taught by our friend Yuri Strom (insert reference to Yuri so that when she’s famous I can prove I know her). I love the way each of our paintings shows our personality. My “I need to please by doing it right, but I’m trying to emulate a carefree lifestyle” painting, Chris’s “OCD everything must be symmetrical” painting, Damien’s “I’m just here for the wine, so my sun’s gonna set in the east if I feel like it” painting, and Gio’s “I’ll show you, happy Tuscan countryside, exactly what pain is” painting.
The next “morning” I went to Barcelona Wine Bar for brunch…at noon. We live in the Bible-thumping state of Georgia, and only just got Sunday alcohol sales. Of course the government still feels the need to regulate the hours that is permissible, so they can’t serve until 12:30, thereby destroying the essence (mimosas) of the brunch. So, I guess it was really breakfast for lunch. Oh well. I showed the gov’ment by ordering an entire bottle of wine.
I consider myself pretty low maintenance, but the other day I redeemed a gift certificate at the spa for a facial/massage, and as I was lying there, I couldn’t help thinking about what kind of luxuries I would afford if I could, in the form of people doing things for me. Or, at least that’s what I was thinking about when I wasn’t worrying that the facialist would touch my face without washing her hands after rubbing my feet (Don’t worry. She washed).
1. Massage therapist. Nothing painful. None of that deep tissue, sore the next day business. Just someone to rub my back at my command as Chris has become less and less receptive over the years to me wordlessly plopping myself down in front of him, shirt adjusted to expose my back.
2. Chef. Eating healthy is much easier if I don’t do the work. I need someone else to figure out how to make vegetables taste good.
3. Driver. Then I can sleep on the way to…everywhere. Nobody should have to be conscious when dealing with Atlanta traffic. Then again, they way Atlantans drive, I’m not sure they ARE conscious.
4. Maid. Surely doesn’t need explanation. Although we will probably have to leave one messy room for Chris so he can let off steam when he gets antsy.
5. Doctor/Specialist. Any discipline(s) needed for Connor. He/she/they will have privileges at all hospitals. They will directly answer our calls at all times and live nearby. They will serve no other patients. All research and efforts will purely serve Connor. They will provide any necessary testing equipment immediately (eg. MRIs, EEGs). We will never wait for an opening again.
6. Stylist. Somehow Cameron Diaz and Julia Roberts have convinced the entire male population that they are extraordinarily attractive, presumably with a stylist. If I have someone fully dedicated to my overall appearance, I can fool the public, too.
7. Personal Trainer. Because everyone needs a full-time staff member that prompts them to turn out the lights and hide behind the couch when they drop by.
8. Personal shopper.Paying someone to shop for me will probably turn out to be cheaper than unleashing me into a Target. To. Pick. Up. Just. One. Thing.
Noticeably missing is the mani/pedicurist. I’ve always regarded those kind of appointments as a hassle, akin to going to the doctor. I paint my own toes, and think I look weird with polish on my fingers (much like lipstick. When you’re this pale, it’s easy to cross the line into hooker). However, I suppose since I’m rich now I could have one come in while I watch Real Housewives of Beverly Hills to do it. As long as I don’t have to make the appointment and drive there. Well, be driven there.
One 45 minute test equals 4.5 hours in the hospital.
Ah, the electroretinography (ERG). a routine test you are supposed to have done every three months while taking Sabril (vigabatrin). You are also required to have an eye exam every three months because this particular drug carries a risk of loss of peripheral vision. Sabril has only been approved by the FDA for a few years. Before that you had to order it from Canada. But then it received approval here, the cost skyrocketed, it became heavily regulated, and it’s only available through specialty mail-order pharmacies. Many people resent being treated as if we’re too stupid to understand and take on the risks.
Given the risks, should we keep a close eye on the vision of our children? Certainly. But the intrusive nature of the ERG makes many families angry. It’s no simple test. We took Connor in for his second one yesterday (mmm hmmm, we’re behind schedule). We had to be at the hospital by 9 and get admitted through day surgery for a test that won’t start until 11. Yup, I told you it’s not a simple test. Then there is lots of information gathering, weighing, measuring, and finding a vein for the IV. Connor likes to make things difficult by hiding his veins. He always requires the IV team, rather than a regular nurse. Then we take him down to the room where they will place contacts in his eyes that test his reactions to stimuli. But he won’t be awake. He must be sedated with propofol (yup, Michael Jackson propofol). Once it’s over, we must wait for him to wake up and drink before they will pull out the IV and we are allowed to leave.
These tests and the frequency with which we are expected to undergo them frustrate a lot of people. We know there are risks to the peripheral vision. But we didn’t put our kids on this drug just for the heck of it. If someone is taking it, it’s for pretty dire reasons. The primary reasons I know of for its use are infantile spasms (why Connor is taking it) and frequent compex partial seizures that have not responded to other medications. Most people (based on my interactions on message boards) wouldn’t take their kids off this drug, even if they were told vision was being affected. Infantile spasms, left untreated, can cause major brain damage. What good is fantastic vision if your brain is fried? And the people taking it for other seizures have likely tried every cocktail in the book and are having so many seizures that their lives are being adversely affected to the extreme. So is being sedated every three months a bit much? You decide.
I’m not really freaked out by Connor being sedated, I guess because I’ve seen so much in his 10 months. I also know he’s being closely monitored. It’s not like Michael Jackson, who was abusing it with the help of a shady doctor. I just think the overregulation is an American agency assuming we are idiots. Should we keep an eye on vision? Yes. Every three months? Some people are on this drug for years. What hell. Especially if you are getting it through Accredo Pharmacy, specialty pharmacy of Medco. If so, you are probably already going through the monthly hell of securing your refill from this incompetent place.
We recently increased Connor’s dose of vigabatrin again in hopes of putting a dent in these eye rolling seizures. We are seeing some improvement. We actually had a day recently where we didn’t see any, which hadn’t happened in a while. We are also having more days in which we only see 1-2 clusters of eye rolling. But other days we see up to 4 or 5. Then again, for a while we were frequently seeing 4-6, so it’s definitely an improvement. His other seizure med is keppra. His neurologist is considering adding Onfi, and if it seems to help, we will wean him off the keppra.
Any TSC families reading this, I will be going to DC at the end of the month with volunteers from all over the country to meet with members of Congress regarding TSC research funding. I’m in need of personal stories and letters to your congress people. If you can help, e-mail me at firstname.lastname@example.org. I can give you more details.
Thanks to everyone who has been voting for me to the right by clicking on the Top Mommy Blogs button.
I don’t know what challenges lie ahead for Connor, but I hope that he will get to travel. This is a long post, but I think I almost died a couple times, which my friends will enjoy, even if they don’t care for my wordiness.
My obsession since college has been travel. I credit a few things for leading to this. One is that I’m an Air Force brat and we moved all over until I turned 12, including California and Japan. Another is my college friend Cecile who had dual citizenship because her mother is French. She was always traveling back and forth, and when we’d all converge back on the dorm, she’d dump out a suitcase of French gummy bears and chocolates, and share adventures from the Paris Metro. Meanwhile I tried to tell impressive stories of all the movies I’d seen at my local Regal cinema and frappucinos I’d downed at Starbucks. Most of my early overseas trips involved her. We went to Spain and Costa Rica, and I would later visit her in France, then Germany as she moved about abroad. (Warning: never move somewhere interesting and make one of those empty “come and visit anytime!” offers to me). I haven’t yet made it to Switzerland, where she currently lives.
The third was my anxiety, which would landslide into depression at times, and left me with a feeling of being constantly restless. I always felt like I was looking for something, and I figured the best way to find whatever it was, was to hop on a plane. If that thing I was looking for was a fairy tattoo from Thailand, selected solely because I thought the silhouetted wings looked cool, I found it. On a side note, a few years after the dust settled on people thinking I was mental for getting stuck with a needle in Thailand, Hangover 2 got released and when it comes up, people look at me like I’m crazy again.
This story I actually did tell my mom. Just not for a couple of months. You see, I’d threatened to get a tattoo all through college, but never followed through. So by the time I graduated, she thought she was safe. Whenever I’d bring it up, she’d mock me and say, “Oh are you? Well if you do, I’ll go get one, too. We can match.” I basically started this same conversation again, as if I didn’t already have one. When she pulled out her usual mocking threat, I said, “Really? You mean it? You’re gonna go get one?”
“Suuuure!” she replied.
I yanked up the shirt to reveal my lower stomach, and silence. Jaw drops. Finally, “Robert! Get in here! Your daughter got a tattoo!”
It was hilarious. It was also nine years ago. She has yet to follow through.
The Thailand trip came on the heels of a six-month stint teaching English in Daegu, South Korea. South Korea is a very dangerous place to live, in that it feels so safe that your guard will be significantly lowered when you leave. As far as safety is concerned, I have never felt so free as I did there. Perhaps my inability to read and follow the news exaggerated that feeling, but a random murder in Seoul made such a splash that it actually seemed like murder was a big deal there, as if it didn’t happen every day. And so I felt free to wander down dark alleys I wouldn’t have otherwise. The biggest danger I faced there was an angry Ajumma (older, married woman)openly disapproving of my wardrobe. Man, they hated that red, strapless dress of mine. I couldn’t understand what they were shrieking, but nothing got the octaves up like that dress.I only remember being scared there once. Most of the time I was there I live in a dorm near downtown, but for a brief period I stayed in an apartment about 15 minutes out, near Kyungpook University, with a Canadian roommate. This was the setting of Travel Story You Don’t Tell Your Mom #1. In the middle of the night came a wild knocking on the door. I came out of my bedroom just in time to see my roommate wrestling a Korean man back out of the door and slamming it shut. He continued to bang and yell while we looked at each other confused. At this point we realized we had no idea what the Korean 911 was. Instead we attempted to start calling the school headquarters, as it was approaching 6 am. One of the managers answered. But since he spoke no English, he just kept hanging up on us. Finally we were able to get one of the owner’s sons on the phone. He contacted the police for us. The banging had gone on for over an hour, but in the meantime, he had taken a fall back down the stairs and was passed out on the landing. The only way for us to get out was to step over him, which wasn’t going to happen. Eventually he awoke and was back to trying to gain entry. During this whole time, not one neighbor did anything. Finally the cops arrived and we opened the door, a thick Canadian girl armed with a bat (where the hell did that come from?) and me with a heavy, metal statue of the Hindu god Shiva. It turned out the man was so incredibly intoxicated, that even having two white girls open the door was not sufficient to convince him that he had the wrong apartment. He lived in the next building. I will say, on his behalf, that those apartment buildings do look like they rolled off a conveyor belt built by Paul Bunyan. The cops thought the whole thing was hilarious, and laughed as they dragged him away, still screaming, I presume, that it was his apartment.Beyond the insult of the cops finding our fear hilarious, the boss’s son never did check on us to see if we were okay. One of many reasons I had no guilt about breaking my contract halfway through. But my ridiculous job there is another entry to come.
The unsettled feeling had arisen once again, so I booked two months in Sevilla, Spain of language courses, but decided to go through Thailand (where I would obtain my tattoo) and Cambodia on my way out of Korea. Why Cambodia? Cambodia had garnered some recent attention due to Angelina Jolie’s adoption of baby Maddox. While in Korea, I took to reading about the atrocities of the Khmer Rouge when they took over from 1975-79 and destroyed the country, coating it in landmines and murdering much of the population. I selected it because in my mind, I would be wandering through jungles, maneuvering around land-mined areas to explore the ruins of Angkor. It turned out that the only thing I had to maneuver around were Australian backpackers. It was an early lesson in that if Lonely Planet has been there, so has everyone else. Land mines were well cleared and danger areas off limits. Bummer. But as I mentioned, Korea destroyed my sense of danger which is how Travel Story You Don’t Tell Your Mom #2 happened. I went alone, but had met another American on the flight into Cambodia and we were traveling together now. On our way into one of the temples, we encountered a couple of young local boys who wanted to give us a tour so they could practice their skills and eventually get jobs. Tourism is a lifeblood industry in this poverty stricken country, so we said no problem. Of course, we knew they would want a couple bucks at the end. Not an issue. So the four of us wandered around the temple and they described the temple friezes and what they meant. The area was drowning in tourists, so we had no reason to be concerned. But there was one part that was set apart from the rest, and before we realized it, we were headed for it via a woody path. Other tourists were fewer and farther between. I hadn’t realized that Cyrina and her tour guide had dropped back a bit, and suddenly my guide stopped. He informed me that he had to go to class and wanted money. His demeanor went from friendly and jovial to aggressive. I said, sure, no problem and started to reach for my Thai baht (even the Cambodians don’t want their own currency). Then he demanded 2,000 baht specifically. I just looked at him dumbfounded. That was over 50 bucks. Was he on crack? “You mean 50 baht? Right?”
“No! I have pay for school! Give me 2,000!”
I glanced back at Cyrina and could see she was having a similar conversation with her guide. I wasn’t scared of him. I couldn’t process more than that he had suddenly lost his
mind thinking I was going to give him that much money just because he demanded it. He was definitely getting creepier by the moment. And then I heard a magical Australian, “Hello, there!” It was an older gentleman we met in our hotel. “Oh, hello!” I exaggerated and ran to his side and we walked back to the main temple, grabbing Cyrina on the way. The guys just glared after us. Back at the main temple, another backpacker we had met previously expressed concern because she had seen us with the guys and she had heard it was a ploy to get tourists away from the crowd and rob them. I never even felt fear during this entire encounter as Korea had slowed my danger processing so much that I didn’t register what truly could have happened until it was over. I’m not normally this stupid…I even keep my keys between my fingers when I’m alone in dark parking lots, ready to gouge out the eyes of an attacker. Damn Korea’s low crime rate. It almost got me killed.
Coimbra, Portugal was location of my scariest encounter, Story #3, which was ironic because I had initially planned to travel to Honduras that summer. But my mother had to go and read the state department’s travel advisories, and man, you never saw someone so nervous about a few machete murders. Look, it’s a small country. You do what you gotta do to get a good spot on the beach. Since my mother took it so well the previous summer when I told her I would be traveling alone for five weeks through Thailand (again), Laos and Vietnam, I thought I’d cut her a break and alter my plans.I’m not sure when the Portugese encounter started. I do know when I first saw him. I had crossed a bridge over the river to see a monastery (I think…that’s kind of cloudy now). There was this dirty looking guy carrying only a camera bag. I’d been out of Korea for a few years now, so suspicious mode was back. He seemed weird and I caught him looking at me, but he could have just been some dirty backpacker. The camera bag mellowed me a bit, but it wouldn’t be long before I started to think there were scalpels rather than cameras inside. I started to walk back across the bridge, and knew he was behind me. He came closer and closer, so I stopped next to some tourists and let him pass. He breathed heavily behind me as he did so. I gave him a reasonable head start and continued. Then he stopped, as if looking at the water, but I could see he was checking my progress. So I hurried past him and made a right through a crowded park at the end of the bridge. I found a place to sit and relax and let Mr. Weirdo go about his day. Within a few minutes, he took a seat just a few yards from me. At this point, the prickles of annoyance turned to fear. There was no doubt about what he was doing now. I made my way through people to a riverside pizza place. My brilliant plan was to have dinner as he would surely lose interest in that amount time. My mistake was that the restaurant was almost entirely windows. I could see him pacing from one side to the other, watching me eat. Now I was entering panic mode. It was Sunday. Most things were closed. I was currently in the busy tourist area, but I would have to pass through some quiet streets to get back to my hotel. I desperately tried to communicate my problem to the waiter in my crappy Spanish, hoping it would be similar enough to the Portugese I needed. He seemed to get the basic idea of what I was telling him and pointed out a nearby police substation. I waited until Captain Creeper circled around the other side and made a run for the busy street. Somehow, magically the traffic cleared for me and I made it, the hole filling in quickly behind me. He spotted me too late. I continued to run and he couldn’t get across. I made the split second decision to head for my hotel because at this point there was no way he could catch up. Even for the few months I did 5ks I could never run like that again. I reached the hotel and locked myself into my room, and left town the next day. I will always wonder what his intentions were, especially considering he did this with so many people present. I also wonder if I should have gone to the police anyway. He probably would have melted into the crowd, but maybe, just maybe, they would have picked him up and discovered he was wanted for rape or murder or something.
In spite of these stories, I generally feel very safe when I travel. I generally try to follow the rule of not looking too much like a tourist. No fanny packs…both for safety and the massive offense to fashion. I quit the whole travel wallet strapped to the body thing years ago. I hate those and prefer to carry no more than I can afford to lose, but if you’re going to use them, carry just enough for basic purchases in a regular purse or wallet. It kind of defeats the purpose when you have to make a big show of practically undressing yourself at the cash register. Be cautious at ATMS, but it is not necessary to have your wife hold a jacket over you to shield the screen from prying eyes. That makes ME want to rob you out of spite, and probably signals thieves that you have a good amount of money in there to be that cautious. You also shouldn’t walk around with guide books and maps in your hand, but I freely admit to breaking that rule as my directional dyslexia won’t allow me to process and retain directions beyond a block.
Oh, and upon further review of these stories, Connor is not allowed to travel. He’s not even allowed to leave the house. Ever.