Because of Connor’s motor delays, we’ve introduced the chunkier foods later than normal. Now we’re starting with the finger foods. He just tried Cheerios for the first time.
Category Archives: Ordinary Life
Tornados, bubbles, and wine. Oh my!
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.
Oh, good. Everyone got the brunch boot memo.
People that would be in my life if I won the lottery
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.
Who would you hire?
9 Simple Steps to Assure a Nutjob that the Baby is Breathing
We’re all stuck in the house surrounded by tornado warnings. I was just going over our tornado safety plans with my mom via text, but we found ourselves at an impasse regarding certain details. Stick baby in the dryer-yes. With the cats? –disagreement as that would require the dryer door to be shut. I guess I could put the cats in the washer instead… What can I say? I love my cats. Well, I love one of them. The other is about on my last nerve with her puking on my bed and tearing up our couch. My intense favoritism of one cat over the other does not bode well for a second child.
Did you know that OCD can cause concussions? I didn’t either, until this week. The other day my husband was cleaning up around the house because…because it had been five minutes since the last time he cleaned up around the house. He bent down to pick up one of Connor’s toys that had rolled against the wall under a window. He misjudged his distance from the sill and bent down full speed to pick up the ball, smashing his head into the sill, resulting in a mild concussion, and a dent in our windowsill. What with his bad knee, achy back, and head injury, I can’t even give him a playful smack anymore, which is challenging, because I have the compulsion to smack him quite frequently. (Editor’s note: just heard him on the phone assuring someone that he’s ok. I should probably include details like that. Between the blog and Facebook, I’m forever making him explain these kinds of things. “No, no. She didn’t mean that the oven LITERALLY blew up.”)
I’ve been sleeping really well lately because I started taking melatonin before I go to bed. I sleep more deeply and wake less frequently. It also helps to lessen one of my OCD areas of focus that I affectionately refer to as “Is Connor breathing so I can go to bed?” Here is my typical “Is Connor breathing so I can go to bed?” routine.
- Watch chest rise and fall.
- Listen for sound of breathing.
- Hold hand under his nose to feel exhaled air.
- Place hand on chest to feel rise and fall.
- Put hand under nose again.
- Lightly touch finger to lips to see if they open.
- Lean as far over the rail as possible to reassure myself that I did really hear him breathing.
- Brush my hair lightly over his face so that he stirs just a little bit, without waking.
- Feel comforted that although I possibly hallucinated my success with 1-7, surely there is no way I hallucinated number 8 and for him to move, he, unquestionably, must be breathing.
If melatonin is kicking in, it’s time for bed. If not, repeat of routine optional.
Does anyone else have a nutty perfectly reasonable routine like this?
(Please don’t forget to click on Top Mommy Blogs to the right!)
Do you like apples? Connor went to Boston! How do you like them apples!?
We flew to Boston so Connor could take part in a TSC study through Boston Children’s Hospital and Harvard. It helps us by potentially identifying areas in which he might be showing delays so we can intervene, and in exchange we are helping the study identify early markers of how TSC might progress. Since there is such a wide variation in how TSC presents, from people leading competely normal lives to round the clock care and everything in between, the earlier doctors can identify who might go down certain paths, the better.
I was worried about flying with a baby. Ever since 9/11, I have had a decidedly contentious relationship with TSA. Apparently I resemble p. 33 of The Big Book of Terrorists. It’s gotten better since right after 9/11 when I was one of the randomly chosen few for the arbitrary secondary search at the gate (every. single. time), I guess because I so perfectly fulfilled the role of “white girl” in a politically correct collection of humans to pat down. So I’d be chilling with Asian Dad, Black Grandmother, Hispanic Mom, and various other people wearing t-shirts that said “Just Do It: Blow up the Plane.” TSA relaxed with me after a few years and mostly only chose to arbitrarily search my bag even though I had cleared security, finally prompting me to remove my bomb-shaped luggage tag and collection of Middle East flag patches meticulously sewn all over.
Who knew a baby would make it easier?! First, we got to bypass the security line in Atlanta. When we returned our Hertz rental car at Boston Logan, they drove us to the terminal instead of making us catch the bus. Then I got to bypass the full body scanner since I was holding him (I’ve successfully avoided these ever since implementation! Score! knock on wood). We got to board early. Rather than making us choose peanuts, pretzels, or cookies, the flight attendant gave us two of everything. And finally, getting to enjoy that intense look of fear in passengers’ eyes when they see you. Pure awesomeness.
It was Connor’s first flight, and generally, he’s not a fussy baby, so we weren’t too worried. Naturally, as soon as we sat down on the plane, he whined and shrieked, until we got him to sleep. From there it was smooth sailing. On the flight back, we had a standard rough Delta landing which he loved. As we bounced and jerked, he laughed and laughed.
We arrived Sunday night (oh no, I’m sorry. It was only 4:30, it just happened to look like night already) and went to pick up our rental car from Hertz. We were upgraded to a Hyundai Elantra. Don’t get me wrong, it’s a cute sporty little car, but the key word is still little. Were we getting a moped before? No complaints though. We had a great experience with them (see above about how they drive people with kids to the terminal). I’d detail our adventures of trying to navigate the big dig and poorly lit Boston roads with tiny street signs to the Holiday Inn, but I try to keep the four letter words to a minimum in the blog.
We finally found it though, only to discover they didn’t have our reservation. Apparently, the hotel made the reservation for the day they received the request from the study, not the dates we would be there. So we were a couple months late for our reservation. Fortunately they had plenty of rooms, with windows into the interior lobby, not to the outside. Deep breath. I will not freak out that I’m going to suffocate and die in here. The study ladies were unthrilled to hear that this occurred (seemingly not the first time) and we are being reimbursed for this as well. So we enjoyed a “not bad” hotel dinner, followed by some extremely questionable eggs benedict in the morning, and to the study we went.
Unfortunately Connor had one of his eye rolling episodes during breakfast which meant he was gonna be a little bit on the tired side. They started with the EEG net on his head, a very expensive and newer version that delightfully didn’t require the glue of the standard EEG. The computer tracked his eyes while a screen flashed pictures of shapes, me and a random woman.
Then he sat on my lap at a table and they watched how he interacted with certain toys. He was given particular tasks to complete with objects, but at that point he had more eye rolls and it was sleep time. We had to cut the cognitive test short and do it based on parent report. The final part was an examination by the neurologist, who noted his slightly low tone, but otherwise thought he looked good. She was impressed that despite his surgery on the right frontal lobe, he showed no weakness on either side, which can occur.
All this took place in just under 2.5 hours and we had several hours to fill before catching our flight home. We decided to tour the campuses of our backup schools, Harvard and MIT. As we both got into our first choices, Chris into Marquette, and myself into the University of Georgia, fortunately neither of us were forced to go to these second rate institutions. Harvard does have a beautiful campus, although that does little to negate their horrendous academic reputation.
We received the assessment results within a couple days. Areas of concern: visual reception (have to look into this more, I think it means he wasn’t paying much attention to the screen with flashing pics-we’re hoping a factor in this was that he was quite tired and not really wanting to keep his head up to look at the screen), expressive language (already looking into speech therapy, since he can certainly be noisy, but isn’t yet making consonant sounds), and gross motor (already getting PT). Not really major surprises. Receptive language was a slighter delay, meaning while he seems to recognize some words, he doesn’t consistently respond to them. I definitely notice that when he’s in a good mood, he’s pretty responsive. If he’s tired or disinterested, he’s pretty good at ignoring me. Interestingly, his fine motor skills were right on target, something I already thought to be the case.
His 12 month follow up looks like it will be the last week of March. We’re extending this trip into a little family vacay. I look forward to building my positive relationship further with TSA. If they stop feeling me up permanently, maybe we can even be friends…
Related articles
- And the results of Connor’s EEG are….Mom is clinically insane! (mixedupmommy.com)
I ate a piano. How is your diet going?
I have been having a lot of vivid dreams lately. I’ve had a couple in which Connor started crawling or walking, so vivid, that when I woke I felt sorely disappointed that it wasn’t real. I know he will…I’m just ready to see it. Then there was the one in which we took him to a very questionable looking children’s salon, one that looked like a candidate for Tabatha’s Salon Takeover. He was preparing to get his first haircut, but then, in true dream fashion, Chris and I were suddenly in the car driving away. In dreamworld, it was acceptable to leave him to get his haircut. But I realized I had meant to stay and now I would miss it and get no pictures, so I started to cry. Chris turns to me and says, “Well, why didn’t you tell me you wanted to stay?” “I forgot!” I replied. “You’ll get over it,” he says.
I shared this dream with Chris the next day, and when I told him that I started to cry in the dream, he laughed and said, “You’ll get over it.”
Editor’s note: When Chris read this he said, Hey! This doesn’t paint me in a good light! So I want to clarify that my subconscious merely is incorporating the fact that we both have an obnoxious sense of humor. And if you don’t immediately get up and get me a glass of water when I ask for it, I will use my blog to make you look bad.
But the weirdest dream was the one in which I ate one of his toys. It made complete sense in the dream that I would. But as soon as I was done I was racked with immense guilt. You’re probably envisioning a small toy, like a rattle or block. No. It was this:
The foot is for size comparison. I ate…a piano. It was like a cartoon with big old bite marks in it. I don’t even want to know what a therapist would say all this means.
I was looking through my bedside drawer the other night where I stash books I haven’t had a chance to read. I came across a book I had buried months ago when Connor was in the NICU. It was a collection of stories about living with TSC, and part of an information pack given to newly diagnosed families. I was too freaked out to read it then, but this time I actually flipped it open and read a few. No anxiety attack, no heart racing, no dizziness. What a difference a few months make. I can even interact in online discussion groups now. It was a long process of enter and retreat for me.
I’m impressed I haven’t felt more blah with the end of the Christmas season. There was still a bit of the letdown of putting everything away and life going back to normal, but it still went fairly smoothly. It was a bit of glum feeling for a moment tonight though, when the last house on the block (the closest one we have to a Clark Griswold) threw in the towel on the outside lights.
But in a way, Christmas is now a permanent fixture in our house, as it spelled the end of our dining room. Connor officially now has too much stuff not to dedicate a space (besides his room) to him. We pushed the table against the wall, surrendering the space to him, as he looked on smirking, sipping his Similac and pretend smoking his teething ring . He gave us a smile that said, “you held on longer than I thought you would.” He thinks it’s “charming” when we pretend to be in charge.
Connor’s first Christmas in pictures
‘ 
You want answers? I WANT THE TRUTH! Well, good luck with that.
December has been a tough month for blogging. I feel like I’ve been going, going, going. That’s even more than I usually feel like I’m going, going, going with a 9-month-old. It started with stressing over trying to get that confounded EEG appointment, then going down to Florida to see Chris’s parents, coming home and checking into the hospital the next day for the EEG, getting discharged in time to start all the family festivities with those that came to town, then Christmas. I was so exhausted I had to renege on plans to hang with some friends at a bar downtown. This after weeks of thinking, “man, I want to go out.” Not that I don’t go out, but I wanted to go out more like I went out pre-baby.
It didn’t help that we went from warm, sunny Florida where it was still summer, and we floated around in the backyard pool with beers in our hand, back to chilly Atlanta, where we immediately had to check in for the stay from hell at Scottish Rite.
Pics from Florida:
So we got all nice and relaxed in time to check in for Connor’s EEG where we could promptly become stressed and agitated. We had no issues with our neurologist. He kept us informed and even let us out a day early as we’d caught several “episodes.” This is our second less than satisfactory in-patient experience. First time was after his brain surgery. The surgery part went great. We love our surgeon and we had a good experience with the surgery department. There were a few issues once we moved to his room though, the primary anger-inducing one being that the day after surgery when he started swelling, he was clearly in pain. His heart monitor kept going off because of it, but nobody ever came to check on him (or for any other alarm for that matter). Don’t get me wrong. I totally understand that every alarm is not an emergency, but as parents, when things go off repeatedly for an extended period of time, we might benefit from a little explanation of what warrants concern. Not to mention, it’s already stressful and then you’re sitting in a room with all this machinery beeping at you obnoxiously. It got to the point where in the middle of the night I just started silencing them myself (after it had been clearly established which ones were clearly unworthy of response). At any rate, we finally asked when his next round of pain meds would be. I stupidly assumed (as I am new to the medical world-my first hospital stay being Connor’s birth) that he was getting them because his skull had been drilled into and his brain resected. “Would you like him to receive pain meds?” was the response. “Ummm…yes. He’s in pain and crying.” The nurse responded, “Yes. I saw his heart rate kept going up on the monitor out there.”
Well, alrighty then. But this was before I read an article that advised to never have surgery on Fridays because weekends aren’t exactly the best staffed, so I chalked a lot of it up to that. Also, before I continue, I want to be clear that it’s not my intention to bash nurses. We’ve had great ones that were very proactive in pushing doctors that were taking their sweet time taking care of business, especially in the NICU, but it’s like any profession. Some are great, some are good, some suck. Because then there was the evening Aunt Donna watched him while we went to dinner and he pulled his IV out, spurting blood everywhere. The boy loves to yank his wires. She was left applying pressure to the bleeding spot until the nurse could return with a bandaid. Good thing it finally quit bleeding because nobody ever came back. We also couldn’t get his med schedule reestablished while we were there becaue every time shift changed, nobody had passed on that he takes them at 8 and 8, so they were coming at all crazy, inconsistent times.
So this time we were there mid-week. I do think he got more attention this time, which was funny because it was just a testing situation. But the meds were consistently late messing up his sleep schedule, sometimes more than an hour. And the most frustrating part is that I don’t want to yell at the wrong person. I don’t want to go off on the nurse, because if they are understaffed, that is not her fault. But with a lot of the stuff that doesn’t go smoothly, you just don’t know where the breakdown happened. I’m particularly uncomfortable in this area because I taught for seven years and I know what it is to have parents let you have it over things you have no control over.
But even midweek, we weren’t issue free. There was the EEG removal and shutdown I mentioned in my last entry. Then came the big one. The second night we were there I noticed Connor’s eye was red and irritated. I thought perhaps that in his rubbing and messing with his electrodes he may have gotten some glue in his eye, so I asked the nurse if there was something that could be done to soothe it. She was uncertain whether it was irritation or an infection so she wanted to check in with a doctor first. Thirteen hours later he finally got a saline flush. (And I had brought up the eye problem twice more). By then it had progressed to goopy, not opening, and him screaming like a bat out of hell when we pried it open. Sixteen hours later after more followups from me, a pediatrician checked him out. He’s still screaming and refusing to open his eyes. Seventeen hours later he got ointment and a swab to test for pinkeye. The swab would later come back negative, affirming that perhaps if he hadn’t had to wait 13 hours for an okay on a simple saline flush, that maybe he didn’t have to suffer the next few days, even after he came home, unable to see us or his toys. Here I thought being in a hospital was the optimal place to be if something like this happened. Who knew we’d have been better off at home and taking him for an emergency pediatrician appointment? Sixteen hours as a patient in a hospital. What happens if you contract MRSA? Does a limb have to fall off?
I’ll end my diatribe there. But I will say that I’m the calm(er) one, always telling Chris not to burn bridges. God help any hospital that houses me should I ever lapse into a coma.
There was one thing that led me to feel grateful after this stressful stay. After we were home, a friend posted a link on Facebook about the passing of a friend’s premie baby. I didn’t know the parents, but as I was downstairs bitching about Connor’s eye, there were parents above us in a NICU I know all too well losing their child after 77 days of life. Things can always be worse. I can’t even imagine.
As I mentioned, Connor’s eye-rolling “episodes” as I now call them did not show up on EEG as seizure activity. After another day of comparing video of his eye-rolling with simultaneous EEG activity, one correlation our neuro could find was that when Connor is awake, electrical activity from his left occipital lobe tuber spreads over the left side of the brain. When he’s sleeping it spreads all over the brain. However, when he has the eye-rolling episodes, the activity resembles what it does when he’s sleeping even though he’s awake. But it doesn’t build up into a seizure. It’s just a little quick burst of activity from the tuber (which if I understand correctly isn’t uncommon in TSC) that dies away before it builds into anything. So, for the neuro, it still doesn’t explain why his eyes move like that when he has these clusters. He is still looking into it because he’s never seen this before. I’m glad now that he didn’t okay the ambulatory EEG because the test would have been a wash without video.
Anyway, December has been so crazy I never got to do my post about decorating for Christmas, which I love. So here are some shots of our house:
And my new pride and joy: a Lego Christmas village! Put together, of course, by Chris. I don’t have the patience. Chris’s initial plan was to assemble and disassemble on an annual basis since he enjoys Legos. Several hours of construction later, that plan was out the window. I’ll explore the fake snow option next year, but after hours of work, Chris was opposed to anything that required the manhandling and moving of the parts. Very, very opposed. So Merry Christmas. I didn’t break the village!
Shots of Connor’s first Christmas in the next blog entry!
Related articles
- With what these hospitals charge, there should be a swim up bar. (mixedupmommy.com)
- And the results of Connor’s EEG are….Mom is clinically insane! (mixedupmommy.com)
Magic Mike, wi fi, iPhones and other such things we can’t live without…
People Magazine’s Sexiest Man Alive edition arrived the other day. Channing Tatum. Thoughts, ladies? I have to say I wasn’t really a fan until Magic Mike. That is embarrassing for me to admit because Magic Mike is one of the dumbest movies of 2012. Plus, and I hesitate to say this as a mom, but it wasn’t gratuitous enough. I mean it’s a movie about strippers clearly targeted at women wanting a girl’s night out, the majority of which, I assume, consumed alcohol beforehand. That’s what everyone did right? We did. And we went to a matinee. Yet, I think we can all agree that too many chances were lost with the other strippers. Joe Manganiello and the dude from White Collar were wasted opportunites. Just saying. I haven’t read the article yet. I don’t want him to ruin it by talking.
Chris, Connor and I spent the weekend with my parents at a cabin in Fort Mountain State Park in North Georgia. My parents do the whole cabin thing a little differently than Chris and I do when we go to the mountains with friends. Our cabins typically come equipped with pool tables or air hockey, a jacuzzi, satellite TV and more bear themed paraphernalia than you can stuff in an 18-wheeler. You know, just enough away from civilization without being too Deliverance about it. My parents like to roll rustic. No air hockey, a few basic channels and GASP no wifi or even much of a cell network period. I suppose I can’t deny it anymore. I’m a hardcore addict to my phone. I’m not like those freaks on MTV that sleep with their phone or anything (that’s ridiculous, clearly the bedside table is close enough) but take away my wi fi and 3G (yup I said 3G, lame Verizon) and you’ll find me desperately pressed against a cold window trying to simultaneously update my Facebook and Instagram feeds. We went into the town of Blue Ridge for the afternoon and I was like a crack fiend in a police evidence storage unit except instead of drugs I was getting high off access to technology. I’ve always been a fan of instant gratification, but the smart phone has ruined me. If I take a picture that I want to post, it’s not sufficient to post it tomorrow….I have to post it NOW! Some of you might be thinking, “Well that’s strange. She NEVER answers her phone when I CALL.” Yes, that’s right. I’m part of the new school of anti-talking phone addicts. I don’t want to TALK to you. But if you wanna text or Facebook me, I’m down. I’ve never been a phone person, even as a teenager. I remember how badly I wanted my own phone as a kid. I loved that phone, too. I was 11, and it was one of those phones with the giant buttons. I used it to call the theater for movie times. I wasn’t planning to go to the movies, I just wanted to dial the big buttons without actually talking to anyone. I’m pretty sure once people read this they won’t be trying to call me anymore anyway.
Something else I noticed at the cabin was that even though Connor is about to be 8 months old, I still can’t get used to my parents being Grandma and Grandpa. I still catch myself referring to them as Mom and Dad on Connor’s behalf, as if he’s my brother and not my son. “Oh, look what Da- I mean, Grandpa is doing!” I figure I’ll be able to comprehend that my parents are grandparents just as soon as I start comprehending that I’m responsible for the well-being of a small human.
Connor’s eye rolling incidents continue. We’re pretty sick of them at this point, especially since we don’t have confirmation of what they are. I’m thinking about calling the neurologist this week and requesting a take home 24 hour EEG, something that the EEG tech mentioned was a possibility last time since Connor declines to have these episodes when electrodes are on his head. Even though he is doing well in spite of them, I’m tired of wondering and obsessing. I look at the clock every so often and think things like, “It’s 2:16. Can we make it to the end of the day without any?” Then I get over eager to get him to sleep at bedtime so I can officially end the count of episodes for the day. Since these started he was having 0-2 a day. Very rarely did he have 0, sometimes 2, and usually 1. Just the last couple weeks we started seeing more 0 days, which is good, but the 2 days increased and suddenly he had three random days with three. WTF? Yet, many of the events are shorter, so I guess it’s sort of a tradeoff? It’s so irritating.
Anyway, I want to share some links to some other TSC blogs I follow. I encourage you to check them out as long as reading mine remains your priority. 🙂 haha. Every individual’s experience with TSC is different, so you can read and share your experiences with others in the TSC community and have stories that are nothing alike. I interact with adults who have it and are doing very well, living normal lives (not to diminish the medical issues they do have to contend with. It’s a disease you must always remain watchful of), but there are those that need a lot of care because they are so severely afflicted. And it’s always in the back of my mind that though we assume Connor is a spontaneous mutation, as are 2/3 of TSC cases, without genetic testing, I cannot say with certainty that I don’t have it myself.
My friend Wendi just started her blog. She was the first person in the TSC community we met and talked to. When we found out about Connor’s TSC and that he was facing brain surgery, we came across her son Hudson’s experience on a couple websites and immediately contacted her with questions. Check it out here.
Another one is my friend Tina. I’ve actually never met Tina. She lives in California and we met online through our wordpress blogs, then FB. Check her out here.
One last blog for now. I do not know this family, but they appear in some of the TSC literature, so Facebook stalker that I am, I located Laurisa’s blog. Find it here.
And if you’re not sick of clicking links yet, please check out this video that discusses some of the reasons that TSC research can benefit everyone, not just those with TSC. Click here.
Related articles
- The Education of ‘Magic Mike’ (family-room.ew.com)
This white powder ain’t for skiing.
I’m going to out myself. The other day I received a package from UPS. There was a powder inside. White powder. I have a problem.
But let us go back in time, to when the problem began. I was a relatively healthy kid, no stick, but not fat by any means. In high school, I officially spent some time as “skinny.” As in skinny enough to get some attention for being “skinny.” It’s like a drug. The attention makes you high. And I got that way because two of my friends threw themselves equally into exercising obsessively along with me. In retrospect, I think I may have qualified as an exercise bulimic because every time I ate something I felt the compulsion to jump, dance, or run around to burn it off immediately. It was a pretty impressive weight loss considering one of the girls in the trio was something of a compulsive liar, and apparently a saboteur as I discovered sometime later in a shop on Buford Highway. My beloved, and as she claimed, low fat, low cal Indian cookies she always had on hand for me at her house were quite the opposite. But how was I to know? It’s not like I could read the label.
But eventually I got bored, hungry and spent more time with other friends, so the exercising waned, I put on a little weight, but not too much and all was fine for my senior year. Then I went to college. Forget the image of the starving student surviving on ramen. I had the meal plan! All you can eat, all day long. And here I was, with more freedom, booze and food than I knew what to do with. (disclaimer: The University of Georgia did not provide booze in the dining halls. Mean students who peer pressured me into drinking 😛 did) I love the pictures we snapped of ourselves that first semester at 11:00 at night as we got ready to hit downtown Athens, mostly because those are the only ones I look good in. Because then I gained the freshman 15. Three times.
After graduation, I used my journalism degree to obtain a high ranking position at Barnes & Noble (see cashier, bookseller). The inability to find a full time job left me with lots of time to exercise again and so I began shedding my college souvenir weight. After about a year of being shocked at how stupid customers in a book store could be (I stupidly assumed we’d get a better clientele than Wal-Mart), I decided I was tired of hearing people whine about how we charged tax on newspapers and that this latte surely wasn’t decaf, so I took a teaching job in Daegu, Korea. I worked out here:
No, seriously. I walked into that building and paid them money with no expectation of being murdered. The movie Hostel hadn’t been released yet. I was innocent to the ways of the world. So despite a lifestyle of being surrounded by countless peers in their 20s who had expendable income to burn on food and drink. And drink. And drink. I did manage to keep from porking up.
I left Korea to face reality…oh, wait. No I didn’t. I went to Spain for two months and took Spanish immersion classes, as I had many Korean won to spend. This is where I started to mildly derail again. Fortunately, being in Europe entails lots of walking, which helped me somewhat fight the effects of Spanish hot chocolate. If you aren’t familiar, hot chocolate there has a consistency of cake batter. It’s thick and amazing. I want to get all Augustus Gloop around it and shove myself into the mug. I’m pretty sure I started to put a couple pounds on again.
The real trouble started when I went home. I started my master’s degree in education and also worked at Starbucks. We’ve already established that higher education makes me fat. Now I also had (unofficial) access to all the mochas I could ever want. I swear I had put on 20 pounds within three months of starting work there. And for those of you who order sugar-free syrup and fat-free milk but keep the whipped cream, well we laugh at you. Starbucks isn’t using Reddi-whip. The whipped cream alone will have Jerry Springer knocking your wall down before you know it. FYI: It’s made with heavy cream.
And so, by the time I began my student teaching I had once again gained a significant amount of weight. As I started my career, I once again began to hit the gym regularly and shed pounds. And I did great. I maintained. I ate well. I discovered that truly the best way to take weight off and keep it off is to make it about eating well and nutrition, not just weight loss. It was the best I ever felt as far as my weight goes. But then I met my now husband, and we ladies know how that often goes. Why go to the gym when you can go out to dinner. And so weight crept on again. This time I decided to reign it in before it got to hideously out of control, and began to lose weight. After some time I decided what better way to lose weight than getting pregnant? Sigh. I love my baby, but not this tummy. And that bring us to the present. I’m nearly 8 months from having Connor and I’ve been at a plateau with the leftover baby weight for about five of those months. I can squeeze into one pair of jeans, and I own about eight. I’m sick of wearing the same flowy shirts over and over. Even though I don’t believe in it, even though I’ve said there is no point in losing weight in a manner you can’t maintain, even though we bought an elliptical and stationary bike, I’m so flipping frustrated that I’ve decided to try the white powder.
Meal replacement shakes. Be afraid. Be very afraid. I like the art of chewing. This could get ugly.
Related articles
- On Being a Foreigner in Seoul (iuoverseas.wordpress.com)
- Korea: Westerners and Insignificance (tjoetsie.wordpress.com)
- Don’t rain on my parade! (koreainstyle.wordpress.com)
Mixed Up Mommy 