Tag Archives: cabin

Sleeping With Scorpions

It was a quiet, relaxing, long weekend in the North Georgia mountains minus the morning we  woke up with a couple of  surprise visitors in the room.

Chris was the first to drag himself out of bed and head to the bathroom. I heard him utter, “What is that?! Is that a scorpion?!” Haha. Chris is the boy who cried scorpion (and various other creepy crawlers) to scare me so I just said, “Yeah, right.” He continued to insist there was something in the bathtub, so I got up to look. I didn’t even make it to the door because right there in my path:

Okay, technically this is the one in the tub, but you get the idea.
Okay, technically this is the one in the tub, but you get the idea.

Yes, right in the exact precise path I had used three times in the nearly pitch dark to use the bathroom throughout the night (I blame wine and my 30s). Thank God for my $2 Target flip flops. Sometime during the night a couple of scorpions showed up to party. I don’t CARE that the Internet insists Georgia scorpions aren’t deadly. There are certain things that should never be in a bedroom and scorpions are on the list, right after porcelain dolls and Robert Pattinson (sorry, I just don’t see it). I ended up discovering a couple dead scorpions between my nightstand and bed as well. So began the panicked gathering of items — including one toddler — and move from the bottom floor (selected for misguided idea that Connor might go to bed first ) to the top/third floor.  A hefty climb for such creatures (I choose to believe). We then went through everything in our bags to ensure we had not picked up any stowaways. Chris, for perhaps the first time ever, had not completely repacked and closed his bag, something I always make fun of him for doing every night on any vacation anywhere in the world. He says he likes to be prepared for escape Jason Bourne-style. He claimed he skipped it this time because I always make fun of him, and now here he was checking for scorpions as a result of my ridicule.

But other than that little adventure with wildlife, it was a relaxing trip. I even managed to read an entire book in about a day and a half — something that I used to be able to do all the time, but can barely get through a chapter most of the time these days. I couldn’t believe how fast I tore through this book. I felt like my increasingly dysfunctional brain had woken up in the fresh mountain air. Okay, so it turned out at the end that I had downloaded a Young Adult novel. I knew it had won awards and was also being banned in several places, cementing my desire to read it. I just didn’t realize the places it was being banned were American school libraries. At any rate, The Absolutely True Diary of a Part-Time Indian by Sherman Alexie was pretty good.

I also discovered that Connor, who loves taking baths at home, isn’t down with large Jacuzzi-style tubs. He flipped out and refused to even let me set him down in it, so I had to bathe him in the sink as the regular tub was now hosting a scorpion.

IMG_2802

IMG_2738

IMG_2788

IMG_2781

IMG_2773 IMG_2742

IMG_2720 IMG_2711

Connor has really been making great progress lately. Some of the awesome things we’ve seen lately:

He’s very quick to respond to requests more frequently, like “let’s go upstairs,” “time to eat” or “show me______.”

He was able to squat down perfectly, pick up book and stand back up without any support from furniture.

He watched me demonstrate his bowling set and immediately helped me set the pins back up after ONE DEMONSTRATION!

He had taken his bib and put it on the couch. When I told him to come eat, he actually stopped, picked up the bib and brought it with him!

We are still waiting to hear from GW about including him in the Epidiolex trial. Argh. It’s been a month since additional paperwork was submitted.

 

Side note: I’ve previously posted about Accredo Pharmacy (Express Scripts) issues. A couple readers have contacted me about their ongoing issues and have subsequently started an FB group and petition. Please check out those links if you are a dissatisfied patient. While I do believe there are some employees working to help the situation, it appears they are the minority and way too many people are still fighting for their prescriptions. The change isn’t coming fast enough for people who are very sick and depend on these meds. If you are experiencing issues, please e-mail Jennifer Luddy at ExpressRxHelp@express-scripts.com

 

Advertisements

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.

Maverick in Blue Ridge. Goose already bailed.

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.