Category Archives: Parenting

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.

Looks like we’re trying the modified Atkins diet.

IMG_5584Sigh. 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.

Petition for legalization of medical marijuana in Georgia.

I’m turning into such a slob.

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:

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But I did finally get a haircut:

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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:

IMG_5723But 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:

IMG_5730To 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:

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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:

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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!

How I Do This.

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…as long as he cares that I’m there. Maybe not like David, newly adopted, possessive. But he looks for me at swimming, tearful, crawls up and grabs my legs, clutches my face with his wolverine claws, clings to the gate demanding I come get him. Maybe he doesn’t call me mama yet, or reach for me when someone else takes him. But if someone else has him and he’s fussing–sometimes…sometimes if I take him he stops.

Sometimes when I have something to blog, I jot it down on my phone’s notepad to remember it for later. But sometimes I jot it down somewhere else and forget about it. I just found this on my laptop. It must have been written this summer, since I mention a mild jealousy that my friends’ newly adopted son showed more outward attachment to them than we necessarily saw from Connor. It made me feel good to read this today because it helps me remember that he is continually progressing, the details of which can be missed when you’re with him every day. Still no “mama” per se, but he does think I’m increasingly awesome, so maybe when he just goes on with his muhmuhmuhmuhmuhmuh, he actually IS referring to me, but I’m far too great for just two syllables.

His attachment now borders on problematic. I have to hide from him during aquatic therapy so he doesn’t watch me and cry for me the whole time. The first time after I moved he kept looking for me in my usual spot. He chases me around the kitchen island and has nearly taken me out multiple times getting under my feet. He has sibling rivalry with the dishwasher because when I’m emptying or filling it, I am unable to pick him up. Sometimes he throws his drink around until I sit down with him and let him drink it on my lap. The last two times we left him with my parents, he wouldn’t eat until we got home. It’s a problem I love to have (minus the eating–sure hope that resolves before we take some long-awaited, adults-only trips next year). He pulls himself up at the kitchen table or couch — wherever we might be sitting — and does not like to be left alone in the playroom out of sight.

And he reaches out for me. He reaches out for me.

People ask, how do you do this? That’s how.

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I despise mail order pharmacies.

I had a full bottle when I started the process of refilling. Now I have this.
I had a full bottle when I started the process of refilling. Now I have this.

Really? I finally get Accredo out of my life, and now my insurance makes me get Onfi from mail order Optum Rx, even though it’s available locally. And what do they do? Take forever to process his upped dose on a new prescription and then just throw it on a UPS truck NOT OVERNIGHT, but 3-5 business days SIGNATURE REQUIRED, without coordinating a delivery date with me, all for it to be delivered two days after we run out. So here is my morning making phone calls coordinating getting an emergency supply. I DESPISE using mail order pharmacies. I started the process of his refill as we opened the current bottle. I thought an entire bottle of Onfi would provide sufficient time for a refill.

When I established on the phone this morning that the vague 3-5 business days would fall into the “too late” category I was transferred to someone who would help me get an emergency supply locally. Well, okay. I can deal with that. Until I realized that actually just meant I handle everything as usual and would have to do what I was already planning to do out of desperation. Call local CVS and beg for mercy. Call neuro and beg for emergency prescription to be sent over. Wait for everyone to coordinate everything and deal with initial insurance rejections and getting override codes.

Not to worry. CVS has assured me they will hook me up with emergency doses as needed because the prior approval needed to give me this “emergency” dose actually takes three days.

It sounds so pretty doesn’t it? Have your medication delivered right to your door! Don’t ever do it if you have a choice! My heart medication — the ones I’m going to need from all this in the future — will probably only be available through mail order.

To CVS Caremark Pharmacy that currently handles Connor’s vigabatrin: We have something special. Please, please don’t ever break up with me. My heart couldn’t take it. No, seriously. If you fail me, too, my heart might give out. I’m begging you to keep loving me.

On another note, I had a voicemail the other day from someone at Express Scripts in regards to my blog about Accredo. They are looking into the issues I shared. The day got away from me yesterday and I didn’t get a chance to call her back, but I appreciate that it is getting some attention there. I need to get some coffee and breakfast in my system to return the call. Oh, and Connor’s permission.

Get out of the way of medical marijuana.

Medical Cannabis Growing Operation in Oakland,...
Medical Cannabis Growing Operation in Oakland, California (Photo credit: Rusty Blazenhoff)

Marijuana is not my thing. I know there are many people who would say that it’s just a matter of finding the right kind, but I’m more of a glass of wine kind of girl. That’s just my taste. I’ve never been big on the legalization of recreational marijuana, but I also didn’t oppose it. I’ve been pretty indifferent to the whole thing.

Then intractable epilepsy entered my life. To date Connor has tried seven seizure medications. He is currently on three and being slowly weaned off one. All have the potential for some pretty serious side effects, and he still has 1-4 seizures most days. And we’re lucky. As much as his seizures suck and play a role in his delays, they are not nearly as bad as what other families are dealing with. (Knocking on wood) Connor has never had a tonic clonic (grand mal) or status seizure (requiring medical intervention to stop). I’ve never had to watch him thrash painfully on the floor, or see him intubated because he’s been pumped with so many meds to stop an unrelenting seizure that he stops breathing on his own.

That is the reality for many people, and Connor is at risk for this as well. I may yearn for full seizure control, but there are people that would kill for the degree of control we have. They watch their kid have 300 seizures a day and ER visits are a regular occurrence. This isn’t some random anecdote. I KNOW these people. Mostly online, but I know them (as I write this, Connor just woke up from his nap on the couch next to me and had a seizure within a couple minutes).

Some people oppose medical marijuana because they can’t see beyond Nancy Reagan’s “Just Say No” campaign. Others oppose it because we don’t have the studies to prove it or to indicate the appropriate dosages for pediatric patients. Some are just too caught up in the fact that people will abuse the privilege of medical marijuana by obtaining a card under false pretenses. Yes, people abuse it. They claim pain and just want to smoke weed. So what? The solution isn’t to punish the people that really need it. Shall I name a few of the far more dangerous legal medications that people abuse?

Unfortunately, thanks to the arbitrary demonization of marijuana, decades upon decades of opportunity for study have been wasted. The people who want to try MM for their children are desperate and don’t have time for politics. There have been countless stories of kids who have found their miracle in the form of a plant. That doesn’t mean it will work for everyone, and I’m not advocating it be a frontline med until we have more data, but it’s no easy task to complete clinical studies and gather that data when you are dealing with an illegal substance.

From WebMD:

Half of all epilepsy patients who are initially started on one anti-seizure drug remain seizure-free for at least a year, a new study confirms.

Among patients followed for as long as 26 years, initial response to drug treatments strongly predicted future seizure control.

Yet 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.

The findings make it clear that epilepsy patients who are candidates for surgery or other non-drug treatments should be considered for these procedures earlier rather than later, says neurologist Patricia E. Penovich, MD, of the University of Minnesota and the Minnesota Epilepsy Group in St. Paul.

“These patients don’t have to wait until they have failed five or six different drug regimens,” she tells WebMD. “If their seizures are not controlled by the first few medications it is reasonable to consider surgery.

And when surgery doesn’t work? Or if you aren’t even a candidate for surgery? Or in the case of TSC, you have a successful brain surgery only to have another tuber fire up?

If you can stand in the way of desperate parents and individuals struggling against the devastating effects of constant seizures, then congratulations. You’ve clearly never seen your loved one suffer. But it’s selfish to further your own agenda at the expense of others.

There’s no more time to argue. We’ve wasted enough.

Articles:

Paige Figi appears on The Doctors to share Charlotte’s story. (video)

A New York Times blog about the potential of medical marijuana and how the laws are preventing researchers from effectively studying it.

Medical Marijuana: a Patient Perspective, a patients’s use for depression and anxiety.

Families are having to move to Colorado to treat their children including this family battling infantile spasms.

Paige Figi’s story and living with Dravet Syndrome (mom used to vote AGAINST weed legalization).

Dr. Sanjay Gupta’s essay on why he changed his mind on weed.

Would medical marijuana help Lorelai?

Parents suing the state of Arizona because their son benefits from MM.

A family that has had to split up in order to obtain the MM their daughter needs.

Boy with tuberous sclerosis and autism benefitting from MM.

10-year-old with Doose syndrome finally seizure free.

NYU medical conference on use in seizures and other neuro disorders.

Marijuana timeline by PBS.

I don’t want to kill my kid, I’m just really fashionable.

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.

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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.

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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?

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Original credit here

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:

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I agree. If your kid is Don Draper.

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I mean….I don’t….what?

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Just the other day I was telling Chris we need a little more excitement in our lives in the form of trips to the ER.

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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.

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Again, words fail me. I assume Johnny Depp himself comes to install it with the $60,000 price tag?

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Your daughter is never too young to learn the art of pole dancing…

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Credit here

Sing with me! The best part of waaaaaking up, is dying an untimely death after getting your foot stuck in a drawer!

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This one’s pretty cool, I just think it was stupid to do the room in white. Getting your kid’s blood out is going to be a b****.

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Spinal cords are overrated. Besides that’s why we keep prisoner clones in the basement.

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Most of the people who buy this playhouse end up living in it. But the kids get the master.