Last night Connor cruised the furniture for the first time! He took three side steps to move down the couch, and a little later, got up and did five in a row. I’m itching for him to walk! My back needs it for one. All his doctors concur that he’s right around the 27-pound mark, but apparently they all buy same defective brand of scale because I can tell you he weighs 80. There will be so many more places that we can go to fill our days. I mean, we have fun at the zoo and Tanglewood Farms, but it’s a bit of a work out. A few more months and I’ll be much more excited to receive invites to bouncy house parties because I won’t find myself facedown suffocating in the corner of a castle, being trampled by toddlers. We’ll probably go broke from me buying season passes to everything in a 50-mile radius.
Last week, Chris had to go to NYC for the day for a business meeting. He happened to stumble upon the taping of the Today Show — the last hour with Kathie and Hoda. They pre-tape Friday’s show on Thursday, and that is the episode you can see him wandering around the back, texting me to ask if he’s on TV and poking his head in to see what’s going on. It’s pretty funny. Here are some stills (yellow tie and briefcase strap criss-crossed):
We had a busy weekend. Saturday, Chris and I made the day trip to Birmingham for the TS Alliance regional conference. I took this picture at the Alabama welcome center because it gave me the warm fuzzies.
We got to hear about the latest in clinical studies, surgical techniques and dealing with schools and IEPs — having been on the other side of IEPs as a regular ed teacher, I dread the possibility Connor could need an IEP. Let’s say I’m just a little jaded in that area, having seen first hand what happens when the law requires schools to provide a “free and appropriate education” but doesn’t provide funding or support. Fingers crossed he won’t, but we have to be prepared for the possibilities. The reality is he will most likely start school with one, given his delays. It’s unlikely by pre-k that I won’t feel he needs one, but I can still hope that won’t always be the case. Only time will tell.
My parents got to spend the whole day with Connor from waking up until almost bed time. Everyone survived so I’m booking a trip to the Caribbean.
On Sunday, we met up with the Cruz’s and the Weathersby’s for Boo at the Zoo. We had two pirates, a monkey and a cow. The cow was SUPPOSED to be Cookie Monster, but the manufacturer and I have a serious difference of opinion on what constitutes a 2T. We had to make a last minute dash to Target on the way for a new costume, where we very nearly added a third pirate to our crew.
I wasn’t really sure how the zoo would go with Connor, being that he doesn’t walk yet, and while he loves animals, I wasn’t confident that the distance between him and the zoo animals would intrigue him. For the most part I was right. But the one place I thought he’d be least interested was one of the best. He loved the aviary because every few minutes the birds would all swoop the enclosure together, which he found hilarious as they whirred past his head. He perked up again at the petting zoo, but getting him to look off into the distance to spot the gorillas and giraffes just wasn’t happening.
Zoo Atlanta also put up a tent with a costumed dj, furry dancing animals and loud music. Babies first rave.
This is what happens when you want a picture of all four boys together:
Afterward we picked up food and went back to eat at the Cruz’s where Connor continued his doggy guilt trip on us by expressing his extreme delight over their dog Bacchus. And it was super adorable when David, who is one day older and fully mobile, got down on his knees to crawl along with Connor.
I am extending the deadline to enter the giveaway for the four FREE online speech therapy sessions. Enter here. There is no obligation beyond the four free sessions.
It struck me recently that it has been 10 years since I was in Korea. No one our age should ever say the phrase ‘when I was in Korea’… a friend once said to me. Less humorous was the number of people who asked me whether I was in the north or south.
It seems pretty surreal looking back on it. I had some really great experiences, and some not so great. The job itself was ridiculous. I taught English of course, as most foreigners there do. All the foreigners I ever met in my seven months had one of three jobs. ESL teacher was by far the leader, followed by American military and a handful of engineers–I couldn’t tell you what any of them were engineering. The whole time, I only ever met two travelers. They were passing through Daegu and stood out to our teacher posse heading to Commune, a regular drinking spot, because of their giant backpacks. Korea tends to get dissed on the Asian backpacking trail.
I’ve been craving the street food and convenience store snacks a lot lately. I miss my little fish-shaped bread with –I don’t know–a sweet bean paste or something inside. And the convenience stores on every corner of Daegu had these little triangles of rice wrapped in seaweed with different flavors in the middle.
The air was disgusting. I think I coughed for the first month straight. A few weeks in, I went to the top of Apsan Mountain and could breathe again.
But there were coffee shops with luxurious seating everywhere so it was a worthwhile trade. Coffee ranks higher than oxygen for me. Now that is something Korea has down pat. Restaurants, bars and coffee shops didn’t fill themselves with wooden chairs. You didn’t count yourself lucky to have your request for a booth granted, like in America. Comfy couches were everywhere!
So were the obvious signs that copyright/trademark law didn’t apply. My knockoff Kate Spade bags, the Robert DeNiro Cafe and Titanic bar–yes, a bar covered in memorabilia from the film–were testament to that.
They also had honor bars. It’s quite possible that these are somewhere in America, but I have surely never encountered one. Tables had long ice buckets and you just took what you wanted and paid when you were done.
I was sick a lot as I had no immunity to Korean germs. And there were a lot more opportunities to pick up the germs. The PC bang, or internet cafes, for one. Everyone spent quite a bit of time there. You see, young children, the Internet, while not brand new, was fresh enough that instead of Facebook, people were signing up for this thing called Friendster, instead of attempting to express your self in 140 characters or less via Twitter, lots of people blogged, and getting e-mail was still a reason to get excited. I still hate Twitter, by the way. I spend the whole time trying to condense my sarcasm under the character limit. I knew I was doomed health wise when the paper cups at the school water cooler were confiscated because the kids liked to throw them all over the hall. They was replaced with a single communal cup. Maybe I could avoid one sniffling kid with pink eye, but not all of them.
Multiple generations all living together allowed some unique businesses to thrive as kids tried to escape their parents’ — and grandparents’– watchful eyes. I mean, Internet cafes aren’t exactly rare abroad, but Korea is a place where every third shop is full of preteen gamers. Or the DVD bang. This would never work in the States, but it was awesome there. You don’t simply rent a DVD in Korea, you rent a small room with plush couches where all your friends meet up to watch films. That was our Sunday night thing. Dinner and the DVD bang. It was pretty much the only night that didn’t revolve around drinking. This is where I developed my addiction to Asian Horror Films– Ju-On, Gin Gwai, Chakushin Ari and Ringu. Better known here as the American versions The Grudge, The Eye, One Missed Call and The Ring. FYI, the Asian version is better in all cases but The Ring. It’s old hat now, but back then, the Asian-inspired imagery of the long, dark hair obscuring the face of an evil woman approaching with erratic, jerky movements was the creepiest thing I’d ever seen. The only thing scarier was what might have previously occurred on the couches we were sitting on since Korean young couples used it as a place to get away from adult prying eyes.
Korea is a very homogenous society. Foreigners really stood out, at least away from certain sections of Seoul. I found myself exchanging the knowing “wassup head nod” when passing other foreigners. It was only a couple days before I walked past a kid who grabbed his mom, yelling, “Waygook! Waygook!” when I walked by. The kids were fascinated by my freckles and I was deemed some sort of (beloved) sun monster. They’d grab my arm and and turn it back and forth. The underside they proclaimed “good.” The top freckled side was “bad. Africa.”
The way Koreans interact with foreigners is quite different from how they interact with one another. But rules don’t apply to us. While introduction is a big deal amongst Koreans, we can be approached, asked a thousand questions and recruited for English practice. Sometimes this is a great way to make a Korean friend, and sometimes it’s just awkward, like when the heat in my apartment stopped working (which also controlled the water) and I had to shower at my gym in a big open room (It was winter and my employers were in no hurry to correct the issue). Please don’t play 20 Questions with me when we’re both naked.
I discovered the greatest food on Earth — Korean BBQ — while I was there. I also discovered the greatest/worst drink on Earth — soju.
My Korean co-workers seemed quite concerned about my weight. I wasn’t overweight, but they were certainly concerned about me becoming so. Concerns were expressed by a building manager that barely spoke English, but mustered up enough language to discuss my “healthy” appearance. “Healthy” didn’t seem to mean to him what it does to me. And another teacher eyed my instant coffee and snacks between classes, and declared that she was worried about me “fattening.”
I became a mini-celebrity for a brief time when a picture of my brother slipped out of a book and the students spotted it. He once bore a great resemblance to Harry Potter, glasses and all, and the kids were thrilled that I knew Harry personally. I think this is what led to my brother’s later adventures in facial hair. A few short years later, I would go pick up my brother on a trip home from his art school and would mistake him for a homeless man, which was preferable to a few years later when he shaved his head and looked like an extra from American History X.
I visited the DMZ, where people are very serious at ALL times. My friend Mieka and I made the mistake of laughing slightly when the guide told us how the north and south competed to have the tallest structure at the border. She spun towards and declared, “Don’t laugh! Watching!”
Besides the job I was officially recruited for, I had a second side job that was actually not permitted by my visa, as did most teachers there. Almost everyone supplements their income with a second job tutoring, and no one is really clear on the consequences, so everyone pretends there aren’t any. I got hooked up with a job doing English lessons for kindergartens around the area. It was a pretty pointless program. It’s a big selling point for schools to offer English lessons, but they tend to be silly and infrequent. Since I worked afternoons, I’d get picked up on occasional mornings by one of the recruiters who would drive me to a kindergarten. Some I only ever went to once. Some once a month. One time I was hired to put on a show for parents’ day. That was the only time they brought someone in, which didn’t seem to be unusual. Then one day I was picked up to go to one of my regular schools, and when we arrived, there appeared to be someone of authority there looking into things. The recruiter hesitated, stopped me, and observed for a bit. Then we got back in the car and took off. His English wasn’t great, but the best I could gather is that perhaps it was a sweep of some sort for visa violations. And that was the end of my kindergarten days. By that point I already knew one teacher who was sitting in a Korean jail for signing for a package that contained marijuana sent by his brother in Canada. Okay, I don’t know if it would have been that dramatic, but no need to find out. Fortunately, he was able to avoid jail time and got deported instead.
My real job was an absurd blight on education. Many Korean kids attend hagwons for supplementary lessons in addition to regular school. English hagwons are a major employer of foreign English speakers. I’m not saying all are bad, but some are truly a joke. I worked for a large chain and we were there as marketing tools. Let me describe the training: there was none.
I got off a plane on a Friday night. I observed another untrained teacher playing Hangman with the students on Saturday afternoon. Monday I became expert Hangman teacher. And this was how the cycle went. More new teachers would arrive, observe other untrained teachers with no prior teaching experience and begin teaching. But, hey, our photos looked good in the newspaper ad. Eventually a “no Hangman” rule was passed. We had to stick purely to the in-house created textbooks. I wish smart phones and Instagram had been the thing so I could show you photos of these textbooks, but alas, at this point, digital cameras were still exciting (I was the only one still rocking film-I am always a good couple years behind on technology). But I will describe one of my favorite lessons to give you an idea of what we were dealing with. One of the middle school texts was called “English Through Cartoons,” and one of the lessons was called “The Keyhole.” The drawings consisted of a scantily clad woman with a large chest barely contained in her shirt sitting on a bed. A young boy has busted in, and she is upset that he didn’t knock. He informs her that it’s okay, he looked through the keyhole before he walked in on her. MUCH better than Hangman.
On Halloween one of the staff asked me to tell a scary story. He said he’d interpret it. I told him I wasn’t sure I knew any appropriate for elementary kids, so he had me tell him a story, which he then approved, and said he’d interpret. It’s that old story about the babysitter lying on the couch after the kids have gone to sleep and the dog is under the couch licking her hand. She goes upstairs to to check on the sound of dripping, and finds the dog decapitated and hanging. When she runs downstairs, she sees the escaped mental patient from the news under the couch. When I came home and got my master’s in education and started teaching, it occurred to me that telling that story here would probably land me in the administrator’s office. But in Korea, it sent two girls screaming out of the room and it was all good.
This kind of stuff wasn’t unique to my chain. This is from a friend of mine, Mieka, who worked at another major school:
Ahh the Flaming Children story . . . Like many of the English schools in Korea, Ding Ding Dang, the school I worked for, embraced all the North American holidays with vigor. So at the end of October we had Hallowe’en celebrations with costumes, candy and jack o’lanterns. We also had games and crafts and ended each party with a mummy wrapping competition. For six class sections this went off without a hitch. The pumpkins were displayed on the front desk and some enterprising Korean teacher decided not to waste the extra candles and set up the extra candles next to them for some mood lighting (can you see where this is going?). For the seventh and final Hallowe’en party, the “mummies” from the different classes were standing in front of jack o’lanterns, waiting to be judged. One of the boys stepped too close to the open flame of the extra candle and the toilet paper used as mummy wrapping caught fire. The girl next to him panicked and bumped into him and caught fire as well. Jonathan and Lee grabbed the kids to try stamp out the flames while I grabbed the nearest fire extinguisher to put out the fire. The kids were okay, their clothes protected them from the worst of it. And I had the most interesting story at the Commune that week. Oh and did I mention all this happened on my 26th birthday!?! I think the story may have become an urban legend among the foreign teachers in Korea but I can attest it is true!
Mieka’s school also had some questionable text books. Foreign teachers would often be hired to create these publications, and they liked to slip stuff in that might not set of the radar of administration, but the teachers thought were hilarious. Unlike me, Mieka took photos.
I was in the middle of a lesson one day and another teacher popped in and said, “Watch this!” He threw a handful of candy in the air and all the kids dive-bombed the floor like vultures. This was the work environment. And I didn’t really appreciate how insane it was until I started teaching for real.
The Americans and Canadians had it pretty easy, though. At least we weren’t in the same boat as the English, Irish, Australian and New Zealanders who were constantly informed that they weren’t speaking correctly.
But none of that silly work stuff mattered because this:
I am really excited about today’s giveaway! I was contacted by PresenceLearning, a company that provides live online speech therapy services for K-12 students. You can check out their web site here. I was not familiar with the company so I contacted a former co-worker of mine who is a speech therapist to see what her thoughts were. It turns out, she contracts with them now. I would have loved to take them up on their offer for a free trial for Connor so I could give you a first hand account, however, with Connor being so young, and the fact that his speech therapy sessions are very hands on and he frequently tries to crawl away…not sure that would work for him.
Some details from PresenceLearning:
PresenceLearning is the leading provider of live online speech therapy services for K-12 students and is now offering online occupational services as well. PresenceLearning strives to match the right therapist with the right child regardless of location. The company has partnered with school districts to offer web-based access to a growing, nationwide network of over 300 highly qualified speech language pathologists (SLPs) and occupational therapists (OTs) via live videoconferencing combined with the latest in evidence-based practices. PresenceLearning is also expanding their offering to serve parents and guardians of children with special needs.
What you get with the giveaway:
PresenceLearning will provide: • Trial of live online speech therapy services. Two 30-minutes sessions per week for 2 weeks (a total of 4 sessions, 30 min each) • PresenceLearning will provide winner with headsets and webcams and do the tech checks and make sure they are all set up technically. When they are done with the trial, they do not need to return the headset and webcam.
What the winner will need to provide to PresenceLearning: • The states where the services will be taking place so we can make sure we have a licensed SLP to serve them in that particular state. • Parent’s name, state of residence, phone number and best time to reach, email, child’s first name, age/grade of the child and what the situation is with the child (i.e do they have a specific speech–language issue that is being addressed in school IEP or otherwise?) After we have this information we will put you in touch with Aaron Skiies from PresenceLearning and get the winner connected with a clinician — one of their top SLPs who will talk to them about how it works and what their child’s needs are. This SLP will be the one to schedule the actual dates and times for the sessions.
How to enter:
Leave a comment expressing your interest in winning the speech therapy trial and the age of the child you want it for. if you’re comfortable sharing, please tell us why you’d like to try it…I will not require that particular detail out of respect for some people’s desire for privacy. I will randomly draw a winner on Wednesday October 23. I will try to contact winner by e-mail, as well as posting here. If I do not hear from you within four days, I will select a new winner.
Feeling much better this morning after an appointment with Connor’s neurologist. We were dismayed to hear about changes on the ERG, but I really freaked out yesterday when his medical assistant mentioned in an e-mail that he wanted to discuss the ketogenic diet. The ketogenic diet is no joke–read here–it involves hospitalization to start it, measuring everything he eats and it’s more extreme than Atkins. I have never wanted to do the keto diet and have always hoped it would never even be a consideration. Don’t get me wrong, it’s not off the table and I understand why people do it, and some have great success, but it just seems like a nightmare to me. I hope to find seizure control another way.
I was really freaked thinking we were going to be told Connor MUST come off the vigabatrin immediately and that the keto diet would be on the immediate horizon. Thankfully, not the case. While a change on the ERG is reason for concern and close monitoring, our doctor said to also take it with a grain of salt. Many parts of the country, people aren’t even doing these because it’s somewhat unreliable at this age. It can’t tell you how much vision is being affected, if at all, only that the retina isn’t responding quite the same way with one of the wavelengths or something–honestly I don’t understand it well enough to explain it. Sometimes, later tests go back to normal and it was just an anomaly, and yes, sometimes the peripheral vision is affected, but the positives of the meds outweigh the negatives. In his experience, most of the time a kid has gone off due to changes on the ERG, they ended up back on it because it was simply the most effective med for them. Unfortunately, keeping the seizures at bay must take precedence over perfect vision. If it was an issue of blindness, I’d be much for freaked out, but hopefully, if he does suffer any loss to peripheral vision, he will learn to compensate.
We do have to decide if we go back for another ERG in a month, or wait the standard three months. He didn’t seem to think it was worth the sedation to go back in a month, though. Obviously, we could have to face decisions over again if we continue to see changes, but hopefully that won’t be the case.
As far as the keto diet goes, he brought that up more as a possibility, and he felt the modified Atkins diet was equally good (and less insane–my words, not his). We will revisit that in a few weeks after we see what happens with the increases in Onfi. We are also finally weaning Keppra- the drug that has been the unchanging constant through all this. We’re not sure it’s really doing anything, so we’ll monitor and see what happens.
He also said down the road, there are other drugs we haven’t tried, though he can’t vouch for them when so many have failed. And we can also revisit surgical options as well as VNS. VNS doesn’t thrill me, as I haven’t seen as much success with that online as I would like for such a major surgical/implant intervention. What is VNS? Read here. That being said, like any treatment, one person’s fail is another’s miracle.
Please cross your fingers for the vigabatrin/Onfi combo and no further change on the ERG!
Last night, we attended a meeting with a Met Life rep regarding financial planning for special needs. The truth is, we don’t know where TSC will have Connor as an adult. Maybe he’ll be doing great and self-supporting, but we just don’t know at this point. So it was time to look into how to plan for the possibility that he may not live entirely independently, possibly because of cognitive issues, or maybe because of health/epilepsy issues. Thank goodness, we did! It’s pretty easy to complicate your child’s situation and have no idea you are doing so. If you have a child receiving any government benefits, such as Katie Beckett or if they are over 18 on SSI, if they inherit anything adding up to over $2,000 they can lose their benefits! Who came up with that number as a cutoff? Seriously? And can so easily happen by accident–savings bonds purchased for them by a relative, naming them directly on a will, putting them as your life insurance beneficiary, or just not having a will and they automatically inherit. Once those assets are spent, they can reapply, but those of us who have applied for such things know how nightmarish it can be. And losing them even temporarily can wreak havoc. The presenter shared a story of a woman in her 50s or 60s living in a group home supported by Medicaid. She had been there for a long time. When her parents passed, they had no will and she inherited what they had, which wasn’t much. She had to move out of the home, and within a few months the assets were spent. She could then reapply, but her spot had been taken. She lost her parents and her home.
We will have to have a special needs lawyer help us with a special needs trust that will protect him from anything like that. Anything that he inherits must go to the trust. That way, if he’s receiving any benefits they won’t be affected. Don’t worry, the government gets theirs. This kind of trust is taxed at one of the highest rates, in case you were worried they’d run out of barricades for our national monuments.
Join us for a meeting with new Atlanta TSC clinic director, Dr. Wolf!
Sunday, November 10, 2013
2 – 4 p.m.
Mount Vernon Baptist Church
850 Mt. Vernon Hwy NW
Sandy Springs, GA 30327
Dr. David Wolf will be spending his afternoon meeting the local TSC individuals and families of the TS Alliance of Atlanta/North Georgia. Join us for this valuable opportunity to meet both Dr. Wolf and other local TSC individuals and families!
There will be light refreshments available.
I got a really aggravating phone call yesterday. It was the opthalmologist’s office after they reviewed Connor’s ERG from last Friday. Connor is supposed to undergo a sedated ERG every three months (description here) because he is on vigabatrin- a powerful seizure medication with the potential side effect of loss of peripheral vision. He was on it for nine months previously for infantile spasms. We weaned him off and began to see increasing seizure activity–complex partials, which vigabatrin is also used for. So we went back on it. Connor had two ERGs the first time around. Being that it is sedated and requires an IV, it is no simple procedure. It is handled by day surgery. So we didn’t adhere to the every three months suggestion. We chose not to have an exit ERG when we stopped because the first two ERGs showed no change or issues. We figured at that point, why put him through that, when it won’t change anything? Even if there had been some changes to his vision, he wasn’t having issues and it can’t be corrected. We had no reason to think there were any issues anyway. While there are definitely some stories of kids with some loss of peripheral vision, the stories of no issues seem to outnumber them. That is purely anecdotal by the way–not evidence based–just my experience online. So we don’t know if this occurred last time we were on it, or in the short amount of time this round.
I was so sure we would never have an issue. But the eye doctor reports “minor changes” likely related to the vigababtrin. The neurologist’s office referred to them as “early signs” that the vigabatrin is causing changes. That’s as much as I know. Connor’s primary neurologist is out of the office until Thursday, but we actually already had a followup scheduled Friday morning anyway, so at that point we will have to discuss our options.
Connor is not going blind, to be clear, but nobody wants to see any damage to their child’s vision. But I’m so frustrated. We’re seeing improved seizure control since restarting vigabatrin. Control we couldn’t get with Keppra or adding Onfi, and Trileptal was a total fail. Phenobarbital was used early on, but needed other meds added and is not the drug I want him on anyway. He was on Dilantin for a bit, but when his levels were checked they were nothing, like his body just ate it up (He’s currently on Keppra, Onfi and vigabatrin).
The issue was a no-brainer when we were dealing with infantile spasms. I wouldn’t have even considered taking him off, even with vision loss, because of how dangerous those are. But now that it’s complex-partials, I don’t know what to do. I mean if nothing else will control it, we need to stay on it and hope there are no further changes. He can’t have seizures all day long. But can there be something else that will work?
I just hope his neurologist has a strong idea of what direction to take, because to be honest, I don’t feel equipped to make the call.
I love a good sunburn with such ridiculous lines, that most of my wardrobe will fail to hide my stupidity. But rather than take responsibility for my failure to apply sunscreen anywhere but my face, I will instead blame the organizers of the annual Miller Lite Chili Cookoff for moving it from the tree-filled shady location at Stone Mountain Park to the the black asphalt parking lots of Georgia International Horse Park in Conyers. No trees. Just asphalt. I will give them credit for a larger space that made it easier to walk around, but I’ll push people out of the way if it means the return to the sheltered haven by the park.
We like to go every year, but we missed last year–the final year at Stone Mountain–for a most hilarious reason. My mom went to the ER. Yes, I just referred to my mom going to the ER as hilarious. You read that right. Ok, it wasn’t hilarious at the time–at least not for a few hours–but it’s an interesting story. It had been a stressful few months with Connor’s time in the NICU and diagnosis, and that morning, another stressful issue (nothing to do with Connor or us) came to light. I called and talked to my mom about it that morning. About an hour and a half later, we arrived at my parent’s house to drop Connor off. This was the first time we had ever come over that my mom didn’t come out to meet us at the car (something I often like to point out she never did when it was just me coming over). When she finally came downstairs, she looked surprised to see us. “What are you doing here?” I thought she was joking. I reminded her they were babysitting while we went to the cook off. “Did I know about this?” she asked, confused.
Forgetting Connor was coming over? Yeah right. Something is weird. She usually only blocks out memories that involve me as a teenager. She looks at Connor and says, “Oh, aren’t you cute,” in a way that indicates this is some random baby mysteriously propped in a chair in her sunroom. My dad and I look at each other. Then she asks why we’re there again. And when we answer her, she clearly doesn’t remember that we just told her. She also can’t remember what she had for breakfast, where they went for breakfast or what neighbors they ran into while they were there. She’s asking the same questions over and over, and clearly isn’t forming any new memories. And me? Great. I realize when I called her that morning I gave my mom a freakin’ stroke.
So rather than downing 900 samples of chili, we head to the ER. My mom keeps asking us the same questions over and over. She’s on a repetitive loop. Then she declares, “I’ve had a stroke! Self-diagnosis for you!” She repeated that roughly 647 times by the time we reached the hospital, and thought she was figuring it out for the first time every time. Once we reached the hospital, since she wasn’t able to retain new memories, she kept thinking she just woke up there and continued asking the same questions. It was the weirdest thing because she was looping like a tape recorder. Same comments and questions, same intonations, same jokes. Blood pressure was off the charts. Scans, an MRI, and a few hours of me battling the urge to video this insanity with my phone, and they come back with an answer. No stroke. In fact, everything looks great. Diagnosis: transient global amnesia. Lasts roughly 24-hours and can be caused by a stressful event. She will completely recover, and it is unlikely to reoccur. It is also extremely rare. Yay us and our predilection for weird rare medical crap. It’s particularly weird because though you forget a big chunk of time and events, you don’t forget the basics, who you are and the basics of your life. So sadly, I was unsuccessful in convincing her she had promised to gift us $25,000 and turn over the keys to her ’66 Mustang.
So then the rest of the day could be spent repeating what was wrong with her when she would ask every three minutes. “Well that will teach you to call and give me bad news again!” I heard that 87 times before we left the hospital. At this point I was embracing the hilarity of the situation since I knew I hadn’t caused irreversible damage to my mother’s head. Regrettably, I did not record her at all. Though you can find YouTube videos of other people with this, and they pretty much sound the same. Hilarious that is. Especially hilarious, since she was going home with my dad who would have to field the questions for the next several hours. I did write a bunch of stuff down in a notebook though so my dad could tell her to read it when she looped.
Some people will do anything to get out of babysitting.
We’re pretty settled in the new house at this point. The dining room is still a mess, but pretty much everything else is in place. Chris has informed me he will not be meeting my two-month deadline to paint the entire house. He seems to think a year is more appropriate estimate for completing all the rooms. “But Becky,” as my friend Cat said, shaking her head “you stay home. Can’t you paint?” HAHAHAHAHAHAHAHAHAHA! Have you met my husband? I paint like I vacuum, it would seem. Willy nilly without leaving straight lines. I am but a hander-upper of necessary supplies.
Connor now has his very own playroom downstairs. It is chock full of fun and goodies for him, and secured so I can get stuff done. So what does he do?
How am I supposed to get stuff done when he looks at me like that?!
Then his favorite toy, his jumperoo, finally gave out after extended use past the weight limit. It was a sad day. This is how he uses it now:
I also decided the room I initially chose to be his was too small, so Chris got the honor of disassembling the crib again to move it. I’m delightful to live with.
Connor recently had a 30-minute EEG at his neurologist’s office, just to check in on the general state of things. Lo and behold, he actually had a seizure on it. Seizures are famous for not cooperating with EEGs, so getting one on a 30-minute test! Whoa. His neuro now believes what we have been seeing are complex-partials, pretty much what we’ve always battled, aside from infantile spasms. They are decreasing since putting him back on vigabatrin and hopefully we’ll get the just-right doses of vigabatrin and Onfi soon. He had his first ERG in quite some time on Friday. I’m not sure if he’s planning to be Miley Cyrus for Halloween or if he’s expressing his distaste for the boring peach-colored gown (where are my rockets?!).
I’m still on my fruitless quest to get a detailed report from Boston on his MRI back in August. We have the basic results of no growth, but we’re also supposed to find out how many tubers, SENs and specific locations. So I will continue on my 9,000 phone calls quest that every person who deals with a medical issue knows so well. Why does everything have to be so hard with hospitals, pharmacies, insurance, doctors… The only doctor’s office that I feel comfortable with response time is his neurologist. But I have to play games with:
the hospital in Atlanta
now apparently the hospital in Boston (which saddens me cuz I gave them props earlier this year)
the mail order pharmacy
I hate when I like a doctor, but staff makes life hard.
My parents just adopted two kittens, and they seem even more fascinated by Connor than he is with them. And he loves kitties.
Sunday was my birthday. A lot has happened in my 23 years. (Shut. It.) Pretty mellow affair that started with brunch with Chris and my sister-in-law Donna and dinner at my parents. It ended festively while I was in the shower that night and heard Chris yelling “Becky!” Oh my god. This is it. We’re going to the ER. Connor must be having a status seizure–something we’ve never had to deal with. I run down in my towel…nope. He vomited. Everywhere. On himself. On Chris. On the floor. On the new couch. So emergency bath time and snuggling. He was fine. Fortunately it was only once and he was perfectly fine before and after. Which makes me wonder if this is the stomach of a toddler issue or a vomit seizure. Either way, he’s great now and expending his energy on keeping me from doing vomit laundry.
At least he’s helping spread Halloween spirit.
If you need me, I’ll be following doctor’s order somewhere:
My sister-in-law knows how seriously I take my health so she gave me this bracelet for my birthday:
Happy anniversary to my parents!
Informational meeting on financial planning for your special needs child this week! Wills, estate planning, a chance to ask questions, etc.
Thursday, October 10 at 7:00pm
Mount Vernon Baptist Church 850 Mt. Vernon Hwy NW Sandy Springs, GA 30327
Please RSVP to me at firstname.lastname@example.org.
Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.