I’ve been following a blog called Toemail, which will surprise many of my friends because I used to have a hideous aversion to feet. Baby feet are another story though. Those are awesome. And my fear of feet in general is fading with time… just don’t get them too close to me. I really enjoy this blog though because people submit pictures from all around the world. Check out Connor’s post here. And then check out the rest of their site. It’s pretty cool!
On another good note, with some help of our medical assistant from the neurologist’s office, we finally got Connor’s EEG scheduled for December 18. Mommy’s blood pressure can go back to normal now.
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.
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.
I just went to pick up Connor, and as I hoisted this 7.5 month old that wears 12-18 month clothing, it struck me. As his body weight succumbed to gravity and my hands pushed up into his armpits, I realized how much more tightly his arms were clamped down over my hands, that his shoulders and arms weren’t doing that slight slide upward that used to force me to clamp down a little tighter. His doctors and physical therapist have mentioned his improvement in tone, but today’s realization makes me realize how far he has come with surgery. His tone was not so low that he was diagnosed with floppy baby syndrome or anything, but neurological issues can cause somewhat low tone which means it takes him a little longer to master some physical activities. He has to build more strength first when doing something new. While his degree of low tone wasn’t expected to be problematic long term, I love to see these little improvements.
He’s also loving his feet these days!
I also spoke with the people doing the study in Boston and it looks like we will be traveling in early January for our first visit. We ended up not qualifying for the initial study we thought we would take part in because his brain surgery disqualified him. Instead they referred us to another TSC study that didn’t have that as a disqualifier, but has similar goals. We have the option to extend our stay in Boston and have a little mini-vacay as long as we pay for any additional hotel nights. But something tells me we may bypass that in the frigid month of January and wait until our next trip at 12 months old.
Connor will go to Boston at
I have a hard time not getting violent with TSA when I fly alone. This oughtta be good with a baby. If I end up in prison, tell Connor I love him.
Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.