2013 in review

The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 33,000 times in 2013. If it were a concert at Sydney Opera House, it would take about 12 sold-out performances for that many people to see it.

Click here to see the complete report.

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Phil Robertson and your Facebook friends.

One night in college we all dressed up, left the dorms and headed downtown. One of my friend’s cousins was visiting from Miami. He’s gay. I don’t remember where all we were headed, but Boneshakers, a gay club back in the day in Athens, was one of our destinations. We had fun, and I thought, aren’t I so progressive, going to a gay club?

The next day, another friend pointed out to me that I had referred to several things that annoyed me that evening as “gay.” My friend and her cousin had exchanged looks, but never said anything to me. I was oblivious–never even realized what I was saying or how it would be perceived. I wasn’t saying it to be hateful, it was slang. But I immediately eradicated it from my vocabulary when I realized how it came across.

Same thing about the “r” word. I confess I used to use that word, too. It wasn’t until I personally knew people that were intensely pained by it that I finally got it and dropped it. Sometimes, we say things not understanding the impact. When my TSC friends discuss their hatred of the term and people who use it, I feel like there is a scarlet R burning on my chest, and I wonder, do they know? Do they know I was one of them?

I’m bothered by this whole Duck Dynasty thing, but not because of what was said and who said it. Frankly, take into account the guy’s age,  background and where he lives. It’s not particularly shocking. And if you met him in person, I think he’d be a really nice guy. I don’t watch the show, but I’ve seen bits and pieces, as well as stories of things they have done to help others in need. I personally don’t like what he said, and just as he has the right to say it, people have the right to be angry, and A&E has the right to “protect their brand.” That being said, I’m not all that sympathetic to A&E either because I’m sure they have to sign off on everything the cast does, and come on, they knew his beliefs. No, I don’t care about any of that. What I care about is what I see on social media.

A lot of fans are angry about Phil Robertson’s suspension from the show. They feel he is being attacked for being a Christian and living by the Bible. And so the posts and memes began. Phil Robertson for president! I stand with Phil! But then some started getting more…honest. It turned into a revering of someone who stood up for the truth about homosexuality.

Some nasty things have been posted as status updates, nasty comments have been made beneath them, nasty things have been “liked” that then show up in your friends’ news feeds. I even read some cruel comments made by family members of one of my FB friends who is part of the LGBT community. Family. Wow. This led me to look closer at the friends lists of some of the people whose disturbing posts I saw.

Are they aware that they are connected to members of the LGBT community? These days it’s hard not to be because Facebook isn’t just about who you know now. You reconnect with high school and college friends, co-workers, sometimes even elementary friends. We’re connected to other families who share our path with special needs or have common goals or beliefs. Maybe you actually think you don’t know any gay people? Are you sure? Check your friends list again. Maybe, just maybe, you have a gay friend who is working towards a goal you both hold dear. Did you want them to see that? Was it intentional or an accident? And now that you know, would you post it again?

I have no doubt I’ve said and posted things that others don’t like. Sometimes I have no idea I’m irritating someone until I break the last straw and  they unload on me because I’ve been rubbing them the wrong way for three months. Sometimes it takes me a while to get it, too.

There is a meme that floats around every so often that I always snicker at. It cracks a joke about a well known practice of a particular religion. I’ve wanted to post it more than once. But I never have because I know I am connected to people in that religion. I have no idea if they’d even care, but since this is one of those rare occasions in which I have some self awareness, I don’t.

I’m not trying to change anyone’s minds about their beliefs. I’m just saying, look through your friend list. Put an actual face on what you’re saying. I know I didn’t get it until I had faces for who I hurt with the words gay and retarded.

I’m not perfect. I might offend you tomorrow. Maybe I’m offending you right now. I have jerk thoughts all the time, and sometimes I say them, too. But think about how you feel when someone posts an update calling something or someone retarded. Or how you feel if someone posts that all Christians are hateful. Or all liberals are stupid. Or all conservatives are evil. Or when family and friends reject you because of the circumstances of your life. I wonder what it’s like to hop on FB to see what your friends are up to, only to see that a bunch of them believe you’re destined for hell.

I don’t write this because I think you will change your beliefs. I write it because I wonder if you’ll change the way you post.

Is this the person with the most Christmas spirit in Atlanta?

If you are wondering where the biggest lovers of Christmas — or at least of Christmas inflatables are located — they are here, at Peachtree Dunwoody and Winall Downs. I don’t know how the neighbors feel about them, but I looooove this house. And I have it on authority from some commuters, that it’s a royal pain in the butt, but for me, it’s absurdly fantastic. I have no idea how many inflatables there are, but several of them move. When we went by this year, several cars were stopped in front checking it out. And better yet, the people who put this up direct attention toward charity. It was drizzly the day we went by so the information sheathed in plastic that they had placed on a table at the foot of the driveway was covered in drops, but a quick Google search led me to the recipient of the donations, Genesis Shelter, a group that works with homeless infants and their families.

It appears our new neighborhood is dominated by white-light people. So I needed a little color in my life. And I got it:

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Now here are some photos I took in 2009. My, they’ve grown!

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And a little update — Connor is feeling much better and is back to tearing the house apart and attempting death-defying jumps off the back of the couch.

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Poor baby has bronchitis.

Connor is still sick. He seemed to not be running a fever after Thursday, and though he slept a great deal, he was somewhat active on Friday. But Saturday and Sunday he slept. And slept. And slept. He was also congested. I was hoping he was just working his way through the cold, but the amount he was sleeping was getting quite worrisome. He actually had his first sleepover at my parents Saturday night. He had a few bursts of energy there, but he definitely wasn’t himself. I took him into the pediatrician first thing Monday morning where he was diagnosed with bronchitis. Oh, and he had a fever again. Had his fever come back, or did my ear thermometer royally suck? I checked when I got home, and it told me his temperature was perfectly normal, even taking into account a margin of error. Fantastic. He was probably running a low-grade fever all along. He’s always warm anyway. He inherited that from his dad and I assume they are both secretly descended from the shape-shifting Native American tribe of Twilight’s Jacob. I was super cautious, always taking it from both ears multiple times and making sure mine was in the normal range for comparison because I know user error can be an issue with those things. At any rate, I do NOT recommend the ear thermometer from Safety 1st. I dug out his old NICU thermometer and stuck it under his arm. That method, which is supposed to less accurate, was far closer to the mark. And we bought a second rectal one for future situations. Apologies in advance, Connor. Fancy technology has never been my friend.

Since he was still doing so crummy, by Monday I did figure there might be another underlying issue, so I went in expecting to be told he had an ear infection. His ears were great. It was his chest that was terrible. It wasn’t his usual pediatrician, but one of the male doctors I hadn’t met before. Sorry to stereotype, but I prefer female doctors most of the time. Generally speaking, they put off a more empathetic vibe and listen more. (And yes, I have experienced the EXACT opposite with both sexes as well). Men often seem abrupt and more rushed. So I didn’t talk with him as much as I would with his regular doctor. But I was a tad hesitant that he prescribed antibiotics. I was ready for them when I thought it was an ear infection, but I thought, isn’t bronchitis viral? Yes, I should always ask, advocate and all that, I know…I just didn’t ask enough this time. I read up on it afterward, and antibiotics aren’t typically considered helpful for bronchitis since most of the time it is viral. But perhaps he was ruling out other possibilities, preventing another infection, being super cautious, so I am giving them. This is my first time dealing with Connor being sick in a manner that is not TSC/seizure related so I’m learning. Again.

The weirdest thing about all this is that illness and fevers typically cause a spike in seizure activity. Instead of a spike, we have seen a major decrease. I’ve caught two since this all started. He usually has 1-3 most days. A bright side, I suppose. If I keep him in viruses and covered in snot, maybe we can be seizure free?

He is better today. Still very tired, but he did summon the energy to throw a puzzle all over the floor in the playroom this morning. That room has stayed spotless since Friday. And he’s staying awake to watch the TV more today. Yesterday he slept ALL day.

But we did get his first sleep over at Grandma and Grandpa’s done. That was the first night he’s been away from both of us. I went to DC earlier this year, and Chris has had a couple of business trips, but it was weird to sleep in the house without him. When I woke up in the middle of the night, I checked to make sure the cats were breathing just so I felt like I was serving a purpose. But I did sleep until 10:15. It was AH-MAZING! No alarm at 8 for meds. I felt like I was 25 again! No… 30. At 25 I would have slept past noon. Chris and I used our free night to see Catching Fire (can I please be Jennifer Lawrence?) and eat at Marlow’s Tavern.

Here I present a montage of Connor’s varied sleeping positions at our home and my parents’ house:

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And a few bursts of energy:

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A quick note on Accredo Pharmacy…

I mentioned a while back I had received a voice mail from someone at Express Scripts regarding my blog entries about my issues with Accredo. I also briefly spoke with her on the phone. I mentioned I still had comments coming in from readers who were experiencing major issues as well. She said she would definitely take a look. I do appreciate that the parent company reached out. And I really, really hope something will be done at Accredo. Something must change because the comments continue to come in. I’ve been adding them to the body of the post that originally got attention here. I will continue to do so. That being said, if things do start to turn around, I want to hear about that, too. Please let me know how it is going!

Update: Jennifer Luddy was the person I spoke with. She commented below with a way to contact her. Hi – This is Jennifer Luddy from Express Scripts. We do care very much about our patients, and if you have a service concern, we want to make it right. Please send me an email atExpressRxHelp@express-scripts.com, and I will assist you.

Check out this Facebook group formed by a reader to combat this issue here.

Medical maladies and eating strategies for the picky eater that will eat anything — sort of.

I had a physical last week. When I got home, I announced that I only had six months to live. My parents laughed and rolled their eyes, a natural reaction from anyone that has known me for 33 years (they were there to watch Connor since Chris was working upstairs). Chris told me to stop it. He never enjoys my macabre sense of humor. I’m not allowed to play games like “What If?” or “Would You Rather?” He doesn’t like hypotheticals, where as I thrive on knowing things like, If I died, would you keep the cats or give them to my mom?  Or, would you rather be married to a donkey or smell like a port-a-potty no matter how many showers you take.

My doctor confirmed that she thinks the headaches I’ve been having are migraines — mild as far as migraines go — but still migraines.

I also took Connor to a dermatologist for a wart he’s had on his foot for some time now. One $50 co-pay and $4 for parking later, off I go to Walgreens for standard over-the-counter Compound W. Sigh. I did like the dermatologist, though. He was an old guy that put out the vibe of an old-timey pharmacist. AND he was familiar with TSC! Even though we weren’t there for anything TSC related, he saw his history and asked questions about how Connor was affected, and he was familiar with various organ involvement. It sounded like he had even been the one to diagnose people based on facial angiofibromas, who were otherwise unaware of their condition. It’s always nice to come across a medical professional that actually knows what TSC is, and that he knew about the effects beyond the dermatological made me quite happy.

In other medical news, CHOA is once again trying to give me what I now know is a migraine. We finally got the call to schedule Connor’s first visit to the keto clinic so we can consult about the modified Atkins diet for seizure control. Want to guess when the appointment is? March 18. March. 18. Lots of four letter words when I hung up. I’m still not really clear on how this is going to go. She told me the nutritionist would call me. Possibly to start the diet before that? I couldn’t get a real clear answer, though I expressed my dismay at waiting three months. She also couldn’t tell me how soon the nutritionist would call. So I think we start the diet via phone consult, which is better than waiting three months, but I sure would prefer meeting with the expert before making such a drastic change to Connor’s diet. But like I said, I’m not even sure if that’s the plan yet.

I must also accept the blame for making Connor sick this week. Connor came down with his first normal, run-of-of-the-mill illness. We’ve had seizures, brain surgery and weeks in the hospital…but not one bout of ordinary childhood illness. He woke up late Wednesday night coughing and ran a low-grade fever most of Thursday. No fever this morning, but still coughing occasionally. Fantastically, though fevers typically lower the seizure threshold, I saw no seizures during the course of battling his temperature with Tylenol and Motrin. But why my fault he’s sick? I recently blogged about his superior health and just this week, I thought, man, we might just make it to his second birthday with no viruses! My bad, buddy. I know better. I’ve been sleeping on the floor next to his crib the last couple nights because it makes me feel better mentally — my hips hate me though. Chris would have done it, but Connor doesn’t tolerate snoring.

So it has been a lot of lying around and sleeping, along with more PBS than usual. If I see this Mouse King episode of Super Why one more time, I will scream.

Progress in the eating arena:

On the bright side, it appears we are making progress in the eating arena. His speech therapist has been providing tools to work on his sensory issues with his mouth. He does not appear to have any other sensory issues whatsoever, but try getting him to use a sippy cup or eat food with no degree of pureeing has been about as fun as…as…as trying to make an appointment for anything at CHOA. To eat non-pureed food, it had to be cut extraordinarily small and he would eat in very limited quantities. But this week has been far more successful at getting him to drink from this cut-out cup (which allows me to see how much he’s getting, as well as prevent it from hitting his face making him buck away).

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He also ate this whole serving of mac-n-cheese. Just a couple weeks ago, I had to cut the pasta up and mix bites with pureed food so he wouldn’t just store it in his cheeks like a chipmunk. But he demolished the whole thing with no mixing or cutting this week.

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He also did well with this, though he didn’t finish due to stubborness. The bites he did take, he swallowed, while before this one was almost inedible because he just built a fortress of peas and meat in his mouth.

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These are his other fancy tools:

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The blue and orange thingy can hook to his clothes or seat and its purpose is to prevent him from throwing his utensils. Unfortunately, they slide out anyway, so that’s not really helping. The purple and green spoon is bendable to work on getting him to feed himself. Angling it should aid in helping him put the food in his mouth. This is all theoretical as he shows little interest in anything other than being fed or throwing spoons. Or removing food from the spoon with his hand. The purple tool is a textured spoon to desensitize his mouth. He hated it at first, but now it doesn’t phase him. That’s a Nuk brush on the end. He hates that bad boy. It is also to desensitize his mouth. Not just for eating food, but also for rubbing it around in there. The therapist added the rubber grip so he could hold it himself, I suppose not realizing that his complete and utter hatred for it means that if you actually put it in his hand, it will immediately be on the other side of the room.

Now if you’ll excuse me, he just fell asleep and I’m going to check his temperature. He’s made it pretty clear that if I stick that thing in his ear one more time, I get a Nuk brush in my eye, so cross your fingers…

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By the way, my blog is nominated for a couple of awards over at WEGO Health. Thanks to those who have endorsed me already! It’s not too late 🙂 to do it here.