Janea and Haleigh left for Colorado yesterday. Haleigh is the little girl for whom HB885 is named “Haleigh’s Hope Act.” The awesome Rep. Allen Peake met her and immediately began his crash course into the world of medical cannabis and CBD oil, pushing this Georgia bill with everything in him. But Haleigh’s declining health means she can’t wait. Her father must stay behind in Georgia because of his job.
HB885 has passed the senate committee but with major changes. Cultivation is out. Basically, it provides legal protection to a person caught with CBD oil. It does not help us obtain it. This was always a hurdle even with cultivation (there were different issues surrounding that). You’d have to get it in a legal state and get here without being caught. Frankly, places like Realm of Caring are not going to sell it to you knowing you plan to cross state lines against federal law because that puts them in danger of being shut down by the DEA. It’s important to understand that this bill, even if passed on the senate floor, signed by the governor and made law, would not allow everyone to run out and get it for their kids. It does prepare our state, however, for a change at the federal level. If the feds reclassify it with the DEA — as they need to — we are ready to go. And hopefully, passing this in such a conservative state will add more pressure to the federal government to get off their butts and help people.
Another twist is that a separate bill is now attached to HB885. The chair of the senate committee, Renee Unterman, has been trying to pass a bill for five years (Ava’s Law) mandating that insurance companies cover treatment for autism (Georgia is one of a minority of states that don’t require autism to be covered). A compromise bill that increases benefits up to age 6 is now part of a package with HB885 called the Kid Care Act. The autism bill has also been tacked onto HB943, which would prevent insurance discrimination over certain types of cancer treatment. The reason is that the autism bill alone would have to go through subcommittee in the House, and thus far, they haven’t been willing to hear it. By tacking it onto bills that have already passed the House, it bypasses the subcommittee when it goes back to the House for approval for the change.
Now the bill must go through the Senate Rules Committee and then go to the Senate floor for a vote. Then it goes back to the House for approval. Last day of session is March 20. Nothing like going down to the wire! Once again, if you haven’t e-mailed your Georgia state senator yet to support HB885, you can find out who yours is at openstates.org.
Also of note are two op-eds in the AJC today. Eli Hogan shares his experience living with Crohn’s Disease and it is a great read. It is followed by a counter-point from Rep. Sharon Cooper. As you read it, please keep in mind that she voted to pass HB885 twice. First out of committee, then on the floor. I would also urge you to read some of the excellent comments from parents below the essays.
If you missed Sanjay Gupta’s follow up to last year’s special Weed, you can find it here. The original is here. Anyone who cannot invest the 45 minutes it takes to watch at least one of these has no right to question the people who are fighting for these changes.
I’ve posted before about Hunter, an eight-year-old boy from Georgia, whose family relocated to Colorado several months ago to try and treat his severe epilepsy with cannabis oil. Previously 12 FDA-approved meds, the ketogenic diet and a surgically-implanted VNS had failed to make him seizure free. He was not a candidate for brain surgery. Some of his meds made him sleep constantly or scream. Here is an update.
This non-psychoactive oil has made an incredible difference in Hunter’s quality of life. According to Mom, “His bad seizures (myclonic clusters) would happen almost daily before and last 5-10 minutes. NOW, he is averaging one a week and they are under 2-3 minutes. In the month of February he has had 4 so far. This is HUGE! His quick seizures used to last upwards of 30 seconds and happen 10-20 times a day. After a month or so we were still seeing them every day and several times a day but they were literally seconds and half the time we couldn’t tell if he was actually having a seizure. Now, after 3 months, we are hardly seeing ANY!”
But in fairness, we must address the side effects of this medication. Sure, it might help kids with terrible seizure disorders that are damaging their brains and ability to function and learn, but surely there are SIDE EFFECTS? Well, you’re right. There are. Here are the side effects Hunter is experiencing.
1. Increased eye contact and the ability to maintain eye contact.
2. He no longer needs Miralax and daily suppositories to go to the bathroom.
3. He is relaxed. His fists no longer remain in a clenched position with his nails digging into his palm, making his hands bleed.
4. After eight years of only being able to sleep on his back, he can now roll to his side and sleep in a new position.
5. He now rides the school bus since Mom no longer worries about him having a bad seizure on the bus.
6. There have been no calls from the school for EMS.
But I guess a few side effects are the price a parent must pay for giving their child quality of life. That and leaving your entire life behind in another state.
You were sort of close. Atlanta froze over creating a hell of sorts yesterday when Rep. Allen Peake dropped the bill HB 885 Haleigh’s Hope, named for Haleigh Cox, diagnosed with Lennox-Gastaut syndrome, who is still in the hospital. It now needs to go through committee in the house and if it passes, then get passed to the senate, and at that point will go to Governor Deal to be signed. Some basic details of the current version are:
The bill will be tightly restricted and very regulated, managed by a doctor, administered orally in oil or capsule form. Seizure disorders have been added to an existing law that includes cancer and glaucoma. (A previous 1980 law had allowed for controlled use for cancer and glaucoma, but due to stipulations on how it could be obtained, never actually benefitted anyone because they couldn’t get it.)
I’m very excited to see progress being made that could potentially benefit Connor and so many others. I’m anxious to find out the nitty gritty on exactly how and when we will be able to obtain it if passed.
Of course, this bill is met with controversy, and I don’t even mean the anti-any legalization whatsoever groups. People who want to treat medical conditions not expressly named in this bill are expressing their dismay. Another point of contention is the limited allowance of THC-where exactly we stand on that is unclear. The CBD oils are very high in CBD with very low THC and have great medicinal value. Since THC is the psychoactive component, this aspect gives great comfort to people who would otherwise oppose it. However, THC also has medicinal benefits. Some of the people being treated with CBD oil are supplementing with THC when the CBD oil alone is not enough. I don’t want to get too technical because this has been a learn-as I-go-along type of experience, and I do not want to unintentionally spread misinformation.
But this is a start. I’m hoping we are headed toward access to all components that could help my child. If you are dealing with a medical issue that would benefit from cannabis, I highly recommend you contact your legislators with your story. I hope we are on a path to this being an option for everyone that needs it. Georgia is an exceptionally conservative state that just let adults make the choice to buy alcohol on Sundays and cannabis has been demonized incorrectly for decades. Miracles don’t happen overnight, even if they should. Getting this far required the persistence of some incredible parents that knocked on doors at the capitol and wouldn’t take no for an answer.
Atlanta’s Snowmageddon (Snowpocalypse? Can’t decide) that hit yesterday and had kids and teachers stuck at school and on buses, people sleeping in Home Depots, shelters, gas stations, strangers’ homes and in their cars on highways, while other people had their 20 minute commutes turn to nine hours only to ditch their cars and trek home on foot dominated the news. However, there was a front-page story about the bill in the Atlanta Journal & Constitution that continued to page A9 featuring none other than the little man himself.
I can’t believe Christmas is over already. Seems like it was Halloween a week ago. Connor had a good Christmas, despite some not so fantastic developments beforehand.
I blogged previously about his bout with bronchitis and I mentioned that instead of an increase in seizures, which can happen in times of illness, he had a major decrease. Turns out many other parents have experienced this when illness causes their child to stop eating much. Hopefully, that’s a sign that the ketogenic diet will work for him. Did I say ketogenic and not modified Atkins diet? Yes, you read that correctly and I’ll come back to that.
Turns out, a week and a half almost seizure free wasn’t worth it because once he recovered and started eating again, they came back with a vengeance. They were longer, rougher and he was wobbly for a bit afterwards. His seizures for the last several months have topped out at 30 seconds. Now they were lasting two minutes. And they looked…odd. I sent a video to his neurologist who called me with the %&*# news that Connor’s seizures had morphed into tonic-clonic (grand mal) seizures. Now, I knew they were rougher than the partials we have always dealt with, but you can read descriptions all day long of seizure activity and it still may not look exactly as expected. So they were rougher, but still not as rough as the grand mals I envisioned. I was shocked and not shocked at the same time.
So damn. A new seizure type. Common in TSC, but we had been lucky to go so long without that turn of events considering Connor’s seizures started at birth. Until now, other than partials, his only other confirmed seizure type was infantile spasms. I have sometimes suspected absence seizures, but those are tough to peg.
Shortly before this development, his neuro had changed his mind about the recommended course of action. As I mentioned in another post, we were trying to get him into the Children’s Healthcare of Atlanta at Scottish Rite or Egleston ketogenic diet clinic for consultation regarding modified Atkins and seizure control. They couldn’t get us in until March, four months out from when we sent his records over. It took a month for them to even make the appointment, and our neuro was quite perturbed that after a month of trying to get started we had gotten nowhere and had three more months to wait. He did not say this, but my guess is that he was on board with MAD when he thought we’d be able to test out the efficacy quickly. Now, that we are facing several more weeks of seizures, I suppose he wants to take a more hardline approach. With the appearance of tonic-clinics, I’m very much on board now, whereas before — I was NOT thrilled with the idea of keto.
So we have continued our efforts to get in earlier at CHOA and they also referred us to Johns Hopkins and UAB in Birmingham, which also has a TSC clinic. Johns Hopkins also can’t get us in until March. So far UAB is the winner with a date of Feb. 4. So unless we get a miracle at CHOA, we will drive two hours to Alabama, which is preferable to flying to Baltimore.
In the meantime, we have upped his vigabatrin, something we were trying to avoid. His seizures shortened again and were less severe, though they still leave him wobbly. Most days he’s had one. Until two days ago when he had five. Yesterday he had one that left his right arm almost useless for 30 minutes after.
But on a happier note, Connor sure cleaned up at Christmas. We opened gifts at home in the morning with Chris’ parents who were in town, then headed to my parents for the afternoon and dinner, then stopped by Chris’ brother’s house where Connor went hog wild with his 10-year-old cousin Cody and their dog.
We can now start a family band, hopefully less annoying than Laughing Pizza, with Connor’s new keyboard, drum and xylophone. I continue to live vicariously through him by getting him a tent for his playroom (I can’t wait until he’s old enough for the Power Wheels I never got in the 80s). One of the gifts my parents gave him is the rideable airplane from Cars. He likes it until he accidentally triggers the mechanism that makes it light up and make noise. He takes off like a bat out of hell, so I suppose I will remove the batteries for the time being so he can play with it without fear of being eaten or chopped up or whatever it is he’s afraid of. He otherwise adores spinning the propeller.
The Christmas gift exchange between Chris and me was rather perilous…for me. Chris is not a “stuff” person. If it were up to him, we’d have a lot more bare square footage in this house. He always makes a list, and I always feel compelled to find at least one thing not on the list. However, I’ve completed his collections (that I started) of Chicago sports team Mr. Potato Heads and garden gnomes. I knew he wanted the Lego Rockefeller Center for his office, so score! An off-list item. Except when I got home, I made the mistake of asking for the updated Christmas list since I had only looked at his November birthday list. Guess what he had added? Dammit. So I gave it a shot by picking him up a button-up shirt at Belk. I stuck to his beloved Izod, but veered from his color palette. I knew there was a 95 percent chance of exchange. Mine’s on the left, his exchange is on the right.
The hubs prefers a more subtle earthy hue…unless the Bears are playing.
For me he did a good job with three necklaces he picked out on his own, in addition to some Loft clothes I picked. He also got silly with this, which surprised me because my excessive mug collection drives him bonkers.
He also picked up a cow chip clip that moos loudly, as I am obsessed with black and white cows and hold to a belief that if I can get it out of the pantry with no one knowing, the calories don’t count. Massive backfire on his part. The thing is so sensitive, that even after being buried in drawer, open the fridge — MOOOOOOO!. Pour some milk — MOOOOOOOO! Turn on the sink — MOOOOOOOO! Then on New Year’s Eve it went completely batsh** and wouldn’t stop mooing even when we were sitting on the couch partying hard with VH1’s Happy Endings marathon surrounded by laundry (jealous?) I was upstairs when I finally heard Chris lose it and yell, SHUT UP! I heard a drawer being yanked open, so I rushed down to save my cow from possible obliteration.
I’m also thrilled to say we made it through all of 2013 without one hospitalization! Since Connor will be admitted in order to start the keto diet, we will not be able to say that of 2014. 2012 gave us five weeks in NICU, a brain surgery and an in-patient VEEG. Here’s hoping we all have a medically uneventful year.
One last thing — please keep in your thoughts that one of our newer TSC families entered our world of seizures last night and had to welcome 2014 in the ER. I’m hopeful they will quickly find seizure control. He’s doing well I understand.
I was contacted by Dave Terpening Insurance Company to be part of their “I Was Thankful for Insurance When…” post on their blog. I love any opportunity to get the word out on TSC so check it out here.
Clapping with Grandma (Chris’s mom) and remembering Lost back when it was good.My brother came in from NYC and refused to change a single diaper.
Mommy is so awesome, I even love her Mii.Christmas Eve bowl-off.Mommy has lost her mind. I’m not getting in that. Mommy is also questioning why her footwear looks so orthopedic here.
Flying with Uncle Carey.
Connor loves Cleo the dog.Dining out with Cousin Cody.Escape at the bowling alley!A cool cousin is one that gets down and crawls with you.
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:
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).
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.
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.
These are his other fancy tools:
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…
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.
Sigh. I really hoped this wouldn’t be necessary, but the last increase in Onfi didn’t make much of a difference and we’re still at 1-4 seizures most days. I e-mailed his neuro and asked if he thought there would be any point to another increase, or should I just bite the bullet and move forward on the diet. I knew when I sent it what the answer would be since he had brought up the possibility of the ketogenic diet a few weeks ago. I was relieved that at least he thought modified Atkins was a reasonable alternative to keto. Not that I think MAD will be easy, but just the thought of keto intensely overwhelms me.
I keep reminding myself that if it works, it’s worth the extra effort, and if it doesn’t, we only do it for a few months. We”ll be meeting with a nutritionist at the CHOA keto clinic to start.
But if it doesn’t work…then what?
We’ve tried seven different medications, and even more effective cocktails only decrease seizures — they don’t stop them altogether. Sure, there are more meds we haven’t tried, but as I shared in my previous post about medical marijuana:
…less than 1% of patients who failed to respond to three anti-seizure drug regimens achieved adequate seizure control on subsequent drug treatments even though some were treated with as many as nine different drugs or drug combinations. -WebMD
I’m going to start this diet fully optimistic that it will work. Because if it doesn’t, the other options are to explore surgery again or live with the seizures. Sure would be nice to have the option of pediatric cannabis in Georgia. Please watch this clip from The Doctors in which Paige Figi explains what a miracle it has been for her daughter with Dravet Syndrome.
I am also seeking guest posts from people who are either legally using medical marijuana to treat their children, or are seeking it’s use — possibly entailing a move to another state. E-mail pin.the.map@gmail.com.
The write-from-home, stay-at-home mom thing is making me really lazy. If you had told me in my teaching days that I’d let my gray roots get so far before taking action or equate getting dressed to climbing Mt. Kilimanjaro or stretch out the months between haircuts to such an extreme, I wouldn’t have believed you. And yet, I maintain my love of clothes shopping, despite the fact that I’m too sluggish to put them on anywhere but a dressing room.
I also realized I need to pull myself out of a clothes rut:
But I did finally get a haircut:
The first thing my stylist said was, “Somebody’s been playing with color!” Sigh. Yes. Once again I’ve managed to start unintentionally turning my hair black with Nice ‘n Easy. Unfortunately, it just ain’t in the budget to do it professionally all the time. Especially since we have to pay off the hit we took when our old house under appraised, finish painting the new house, and — come hell or high water — we’re going on vacations again in 2014. We’ve gone on trips — that’s what you call it when you take the kid — but we are going on vacations –what you call it when you drop the kids off at Grandma and Grandpa’s and outrun them back to the car. And just Friday I received the exciting news that one of my good friends is engaged and I will likely be attending a wedding overseas in about a year!
Looks like I reloaded my Fitness Pal App just in time. I’ve been inputting my food intake for a week now to track my calories. I think it will really help this time since I find myself genuinely debating the merits of one Oreo cookie vs. two pieces of leftover Halloween candy. I started this right before the holidays because I really like a challenge. Also, I’m tackling my weight loss with a very specific strategy:
But here I’ve gone on and on about me when I know pretty well most — okay fine — all of you really only care about Connor, so…
Here he is relaxing with a puzzle:
To be clear, he only likes taking them apart and throwing the pieces everywhere.
This is what happens when I get up in his business about his molars:
And this pictures really doesn’t do justice to how much it hurt, right on the bone. And he wouldn’t let go. I almost panicked and smacked him, but refrained. I now know I will perform poorly in the event of an attack by a dog — or alligator. I believe the recommendation is to push toward the animal, not to pull away. Fail. Also, the state of my nails is not indicative of my current state of laziness. I’ve always been too lazy for mani/pedis. I regard them as annoying appointments to keep, like doctors. Random side story, though you can’t really tell in the picture, that nail is totally deformed from the time I slammed it in a car door when I was 15. It grows warped and downward the longer it gets, kind of like the creepy Guinness World Record keeper with the longest fingernails. But there I go about me again.
Go check out this page created for epilepsy awareness by a man who lost his young wife to epilepsy. He has been sharing people’s epilepsy stories all month for Epilepsy Awareness Month. He also makes these to share:
For those that might be confused, I don’t know if there is an Abigail, Ga — that was a misunderstanding — and my aforementioned laziness precludes me from Googling it. But these are pretty awesome. Check out his gallery of E-heros!
I’ve been combing the Internet for an indoor swing for Connor now that winter is settling in. It has actually been in the 40s here in Georgia, otherwise known as “Oh My God I’m Gonna Freeze To Death Like The Original Pilgrim Settlers” weather here in the south. At least we have Chick-Fil-A and Waffle House so we won’t starve. His spurt in motor skills was well-timed right before the part of the year where I climb underneath 12 blankets and don’t get off the couch for five months.
His newfound independence reminds me of the Terminator films. Everyone was all, woo hoo! Skynet! Oops. Apocalypse. You see, Connor, too, has become self aware and he will soon be on an unstoppable path of destruction.
But apparently an indoor swing is not attainable for a reasonable price once you factor in the cost of hardware SOLD SEPARATELY. ALWAYS. SOLD. SEPARATELY. Everything I need is solely manufactured for kids under 25 lbs.
On my fruitless quest I was reminded why I hate home design blogs.
Originally featured on Martha Stewart (surprise), shared on other design sites.
Yeah. Let’s install a trapeze in the living room. This is modified from my initial reaction which involved some four letter words. I became intrigued…what other impractical and deadly joys are out there that I’m ruining Connor’s life by not providing?
Okay. This is a cute use of space and it’s apparently really the boys’ bedroom. So this is actually a lesson in parenting. It is apparently possible to have an elevated surface, two kids and no homicide attempts. I only have one kid so I can’t speak as a parent, but I can speak as a sister, and I SOOOOO would have pushed my brother off that on a daily basis. And I would have gotten away with it, too. Just like the time I gave him a bloody nose and claimed I was trying to stop him from running into the street. He wasn’t.
This is hailed as a “vibrant and lively” kid’s bedroom:
Seven years I spent yelling at students to get down when they were climbing on things they shouldn’t. Could have saved my breath since apparently parents are indifferent to broken limbs.
I was on such a high yesterday about Connor climbing the stairs that I could have been the mayor of Toronto. Of course, this morning brought the sobering (though still awesome) reality of this development. I thought I had secured him this morning when I ran upstairs to get something. I stayed for a couple minutes talking to Chris about his progress painting the master bedroom, then opened the bedroom door only to find a toddler charging at me from the top of the stairs. It appears I failed to secure him properly and he followed me up the steps. Bad mommy.
Problem is that we actually tried installing a gate at the top of the steps but it didn’t really go so well as it is wedged between two bannisters and no wall. Same at the bottom. The bannisters just sort of start to push outwards as the door is tightened and doesn’t seem particularly safe, so we will just have to be sure to secure him away from the stairs all together.
But in all my excitement about his motor development, I forgot to talk about his cognitive development. I think I did mention how excited I was when I asked him if he wanted to read his favorite book and he crawled into the play room straight to it. But I have also seen an unbelievable change in his ability to manipulate apps on the iPad. We have several that we downloaded a long time ago at the suggestion of his therapists to teach him cause and effect, but he really just banged on the screen as we tried to help him manipulate them.
He did best with this one, Baby Piano, as it actually does respond well to random banging. In the last couple weeks he has had a renewed interest in it with more careful tapping of the keys.
He also figured out how to manipulate Peekaboo Barn independently. It’s pretty basic, just tap the barn door to open it and a new animal appears each time making sounds. But I could see that he was actually waiting to see what animal would appear inside instead of just hitting the screen.
A more recent download is the Crayola App which allows him to use his finger to color. He just has to touch it to make the colors appear, and I only helped him as far as changing colors for him. And he seemed to notice that I was changing the colors.
But this was the one that blew my mind. During the IFSP meeting this week, his speech therapist put Itsy Bitsy Spider on for him. We hadn’t used that one with him in a long time as it’s slightly more involved with moving characters and multiple places to tap to make things happen. I’d never seen him use it very productively. We either guided his hand or he banged randomly. Without even having seen it for weeks and weeks, he began to carefully watch the spider and tap it at opportune times to make it interact. I could barely concentrate on the meeting I was so shocked.
I had a really vivid dream last night that he started talking. Maybe it was a premonition 🙂
Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.
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Mixed Up Mommy 
