The straight dope on seizures and...dope.

Like me, I know a lot of you have kids (or other family members) suffering from seizure disorders of one type or another.  Like me, I know you've most likely been prescribed a number of different treatments over the years - switching from tegretol to phenobarb to lamictal and back again, changing doses, checking blood levels. 
Like me, you've still been subjected to seizures either frequent or occasional, whether your patient has been medicated or not.
Some meds work great for epilepsy but not so much for non-specific seizure disorders.  And sometimes the type and symptoms and strength of the seizures changes over the years.

My boy has had seizures all his life - thankfully not TOO frequent - but he always had just as many ON the meds as he did OFF...so we made a decision several years ago to stop medicating him since it didn't make any difference to the frequency or severity.

The last maybe 3 or 4 years Josh's have been getting a little more frequent but still irregular...sometimes once or twice per month, sometimes once every two months.  It's very unpredictable.  They have gotten more severe though, his body stiffens and locks down and as you know back in June he actually gave himself a compound fracture during a seizure.
Granted, it was a weak spot where it had been cracked in the NICU by a nurse changing his shirt, and it was his "bad" arm (due to the cerebral palsy his right side is weaker and smaller and he doesn't really have any real control).
BUT STILL
VERY SCARY.
Plus it's healed all crooked and weird because they feared his bones too brittle to put any plates or screws in. So there's that.

ANYWAY.

I'm guessing most of you who have to deal with seizures have seen all the 'miracles' happening with Some Kind Of Oil Made From Weed, or Cannabidiol oil.
Like me, if you've heard of it or seen the videos crossing your facebook newsfeed, you've checked it out.
Like me, maybe you were totally confused by all the information.  Hemp oil, CBD oil, with THC, without TCH, what kind of dosage, pills/liquid/vape oil...DOES IT WORK? Which works best? Dosage for an 85lb manbaby? Will I overdose him? Is the OTC kind safe?

There have been a few small studies so far that indicate that while the CBD doesn't completely eliminate seizures in all patients, it does appear to lessen the frequency up to about 40%.
If your kid is one of the kind that has several seizures per day/week/month, 40% is a SIGNIFICANT number.
My expectations and hopes were lower - basically I was just hoping and praying that best case scenario would be to lessen the severity so they weren't as hard on his little body.

So I read and researched and asked & consulted & had friends in MJ-Friendly states ask around at their favorite dispensaries in case YOU are as skeptical about trusting random testimonials as I am.
I will tell you my personal story, since you already know me.


We're using the over-the-counter CBD oil in a suspension of grapeseed oil.  There is NO THC in it.
It is NOT Hemp oil.  You canNOT overdose on it.  Side effects are minimal and reported mostly a little drowsiness, dry mouth and in a few cases, diarrhea. 
Joshua has not had a seizure since he's been taking it...
...for 10 and a half weeks now.
No discernable side effects.
I give him half the recommended dosage, which is one dropperful per day.
Maybe it's still to early to tell whether it's just coincidence or the oil that is helping. I'm open minded.
But he does have "tells" and signs that typically start a day or two before a seizure.
He's had those signs a few times over the past 2 months...but no seizure following.
YES I KNOW I'VE JINXED IT NOW and he'll probably have one today.
If he does, I am hoping it's less severe.

NOW YOU HAVE A TRUSTWORTHY (hahahaha! well, you know I wouldn't mess with you about something as serious as this) TESTIMONIAL.
And I will keep you updated.
I'm thinking of taking this for myself eventually, as it is said to be good for chronic pain, but it is a little pricey at about $36 for a small bottle.

The place we get the oil is The Health Patch  - formerly Nana's Pawpaw Patch - in Midwest City. They have a couple people who've trained in holistic & naturopathic treatments and I can tell you they are VERY patient and thorough in answering questions and printing out info. Super nice, super helpful. (No, this is not an advertisement for them - but I do highly recommend)

Happy 22nd birthday! The age of no particular significance.

Every year before I revise and repost, I remember. I relive. And even if it's just for one shining day, these memories make everything else fall away: all the petty irritations and frustrations, the dislikes and grudgy feelings...all of the things that, in the long run of life, aren't worth the importance we place on them. 

It's been a long tough journey that has passed in the blink of an eye.

---

DUN DUN DUNNNNN! THE ANNUAL BIRTHDAY POST IS HERE. YOU WILL READ IT.

Seriously, 22? How is that even possible? Just yesterday they were like...13 -- and some days they still act like they are.

My teeny-weenie micro-preemie 1 lb babies. ONE. POUND. I know, right??

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THE DUE DATE: June 4th

THE BIRTH DATE: February 13th. Preemies for pre-valentine's day.

These children clearly get their lack of patience from me.  They were born at 24 weeks, or about 3 and 1/2 months early. They weighed just over 1 lb. each, and were about a foot long. I'm talkin' teeeeeny tiny. Micro-preemie, I think is what they are called now.

Anyway, this is my boy, at about a month old:

I woke up the morning of February 12th, headed for the bathroom, and after about 5 minutes I called out to the baby daddy, "Either I've lost all control of my body functions or my water broke".

I'll give you a hint - my functions were still under my control.

So natch we rushed to the hospital, where the stupid ass snot face condescending nurse (actually I love nurses in general, but this one? NOT SO MUCH) had me lay on a gurney for an hour and then said that I was fine, no fluid was "leaking" (I know, gross), and the pains in my back and belly were just muscles stretching, NOT CONTRACTIONS...and then she tried to send us home. 

Me being me, I caused a scene.

Hey, guess who ended up being right about me being in labor?

Here is my little girl, at about a month old:

The doctors tried to stop my labor for 24 hours, but apparently my kids were having none of that. On the 13th of February, my boy arrived in the usual way - of course, I was knocked out for the entire thing. My daughter was still safe and secure in her bedwomb -- the idea was to let her 'cook' a little longer (which would have been weird to have twins with different birthdays, right?).  So they were wheeling me into recovery when Miss Contrary's heart rate dropped to zero, and they did a SUPERFAST emergency C-Section to get her out. Evidently she didn't like being alone.
So it was like Twins Two Ways, with extra Mommy Staples.
This is also where I discovered my love of morphine. MMMMMMORPHINE.

Their ears were still folded down (WEIRD! I didn't even know ears did that until my kids were born. It was like puppy ears or something), and their lungs were not completely developed, and their little hearts were working overtime/doubletime.

They struggled for every single breath. They fought to live.

And so they did. And so they have.

Thank you, God.

Thank you for this little miracle....(my girl at about 2 months)

and this little miracle...(my boy at about 3 1/2 months)

The doctors gave them less than a 50% chance of survival.

Fortunately they got my stubborn genes as well as my temperamental ones, because my kids wouldn't listen to percentages; they went all HAN SOLO and were like NEVER TELL ME THE ODDS!

Their hearts were overworked, their lungs were and are covered in scar tissue, they are cursed with keloid scars as well as scars from perc lines and picc lines and a million little junkie scars on arms and feet from being pricked with lancets every hour. They have scarred veins, they had damaging bleeding in their brains, preventing brain growth. And yet...    

Becca's first day home from the hospital! Nearly 4 months old and not even 5 lbs. I still have this amazingly tiny dress - I swear it's barely bigger than Barbie size. Those booties she has on? The foot part is less than 2 inches long. Each twin came home attached to oxygen and an apnea monitor - whenever we all went anywhere together it looked as though we were leaving home for a month, so laden were we with electronic equipment, oxygen tanks, diaper bags, strollers...which is partly why I became the hermit I am today. #Lazy

Here they're about 7 or 8 months old, I think (did I ever mention that I am TERRIBLE about labeling pictures? Because I am). Clearly Becca was already trying to wear some sort of tiara:

One morning I discovered that my daughter knew how to climb into her brother's crib.

When Becca was about two, this is what "Go get ready for bed" meant:



Josh had the softest, wispiest hair so I let it grow and grow... until that time I gave him a buzz-cut and he's been sporting a Greg Brady WhiteBoy 'Fro ever since. Unless I cut it myself, in which case he looks sort of like he's got the mange. #TrueStory

There were middle-of-the-night phone calls with doctors on the other end of the line telling me that they didn't think THIS twin or THAT twin would make it through the night- so we'd rush to the hospital to sit and put our hands in the "baby terrarium", as I thought of them, and listen to the beeps and the whooshing of the ventilator and wait for the inevitable. There were six months in the NICU and 3 or 4 Thanksgivings and Christmases spent in the hospital. For awhile I thought they were going to name a wing of the children's ward after us, or at least keep "our" room in reserve.

There was RSV and BPD and ROP and a bunch of other things with initials that I barely understood.
There was double hernia surgery and laser eye surgery and surgery to correct crossed eyes. 

There were staph infections and even a broken arm that was caused by changing my son's shirt whilst in the NICU - he of the tiny little brittle bones. There were breathing treatments and nebulizers and oxygen tanks and albuteral and lasix and digoxin and tegretol and synthroid and constantly changing medications and frequent seizures and paralyzing fear (well, that last thing was *me*).

I remember a tiny Becca setting her pacifier down in something that had spilled...she picked it up, took a suck, and said, "What the hell is all over this?!" It made me laugh so much that I couldn't even correct her.

I remember one single sentence of absolutely clear speech from Joshua in 21 years...he was sick and angry and yelled, "I WANT MY BOTTLE!"  It was astounding and amazing and thank goodness my mother witnessed it or I would have thought my ears were playing tricks on me.

TWENTY ONE. 

(or The One Where Joshua Gives Duckface)

This milestone is especially important for Joshua, as he has already outlived all early predictions of life-span. Though it's a little like living under the Sword of Damocles, we do not give in or give up. And despite the fact that they were and are so fragile health-wise, for the last 10-12 years I can count on one hand the number of times they've had to go to the doctor or hospital. 

And now HAPPY 22nd BIRTHDAY!
(YES, Winnie The Pooh is still on the walls. Joshua loves Pooh bear)

How could I not believe in miracles? When I look upon those miracles every day of my life.

I love you, my babies. I have been and will always be thankful for every breath that you take, every blink of your eyes, every morning that you wake. I love you with everything inside me.

You still make me laugh, you still make me cry, you still make me want to smack you upside your silly little heads.

If all the world was a beach, I would love you more than all the grains of sand added together. Times infinity.

"That Moment When Your Heart Explodes From BlogAwesome" #FakeUpworthyTitle

**Yes, that was totes a clickbait title. MADEJALOOK

Every year before I revise and repost, I remember. I relive. And even if it's just for one shining day, these memories make everything else fall away: all the petty irritations and frustrations, the dislikes and grudgy feelings...all of the things that, in the long run of life, aren't worth the importance we place on them. 

This story is what matters. #TheseLivesMatter

It's been a long tough journey that has passed in the blink of an eye.

---

DUN DUN DUNNNNN! THE ANNUAL BIRTHDAY POST IS HERE. YOU WILL READ IT.

"On the roller coaster of life, your 21st birthday is like being at the top of the first giant hill with your hands in the air and no lap bar."
– Greg Tamblyn

My tiny little 1 lb babies are 21 today.
Some of you have been reading the Birthday Post since they were about 9 or 10 or 11, so wrap your head around TWENTY-ONE, if you can.

The most important thing, really, is that now I can send my daughter into the liquor store to buy me wine. I NEVER HAVE TO GET OUT OF THE CAR AGAIN. #SCORE

---

---

THE DUE DATE: June 4th

THE BIRTH DATE: February 13th. Preemies for pre-valentine's day.

These children clearly get their lack of patience from me.  They were born at 24 weeks, or about 3 and 1/2 months early. They weighed just over 1 lb. each, and were about a foot long. I'm talkin' teeeeeny tiny. Micro-preemie, I think is what they are called now.

Anyway, this is my boy, at about a month old:

I woke up the morning of February 12th, headed for the bathroom, and after about 5 minutes I called out to the baby daddy, "Either I've lost all control of my body functions or my water broke".

I'll give you a hint - my functions were still under my control.

So natch we rushed to the hospital, where the stupid ass snot face condescending nurse (actually I love nurses in general, but this one? NOT SO MUCH) had me lay on a gurney for an hour and then said that I was fine, no fluid was "leaking" (I know, gross), and the pains in my back and belly were just muscles stretching, NOT CONTRACTIONS...and then she tried to send us home. 

Me being me, I caused a scene.

Hey, guess who ended up being right about me being in labor?

Here is my little girl, at about a month old:

The doctors tried to stop my labor for 24 hours, but apparently my kids were having none of that. On the 13th of February, my boy arrived in the usual way - of course, I was knocked out for the entire thing. My daughter was still safe and secure in her bedwomb -- the idea was to let her 'cook' a little longer (which would have been weird to have twins with different birthdays, right?).  So they were wheeling me into recovery when Miss Contrary's heart rate dropped to zero, and they did a SUPERFAST emergency C-Section to get her out. Evidently she didn't like being alone.
So it was like Twins Two Ways, with extra Mommy Staples.
This is also where I discovered my love of morphine. MMMMMMORPHINE.

Their ears were still folded down (WEIRD! I didn't even know ears did that until my kids were born. It was like puppy ears or something), and their lungs were not completely developed, and their little hearts were working overtime/doubletime.

They struggled for every single breath. They fought to live.

And so they did. And so they have.

Thank you, God.

Thank you for this little miracle....(my girl at about 2 months)

and this little miracle...(my boy at about 3 1/2 months)

The doctors gave them less than a 50% chance of survival.

Fortunately they got my stubborn genes as well as my temperamental ones, because my kids wouldn't listen to percentages; they went all HAN SOLO and were like NEVER TELL ME THE ODDS!

Their hearts were overworked, their lungs were and are covered in scar tissue, they are cursed with keloid scars as well as scars from perc lines and picc lines and a million little junkie scars on arms and feet from being pricked with lancets every hour. They have scarred veins, they had damaging bleeding in their brains, preventing brain growth. And yet...    

Becca's first day home from the hospital! Nearly 4 months old and not even 5 lbs. I still have this amazingly tiny dress - I swear it's barely bigger than Barbie size. Those booties she has on? The foot part is less than 2 inches long. Each twin came home attached to oxygen and an apnea monitor - whenever we all went anywhere together it looked as though we were leaving home for a month, so laden were we with electronic equipment, oxygen tanks, diaper bags, strollers...which is partly why I became the hermit I am today. #Lazy

Here they're about 7 or 8 months old, I think (did I ever mention that I am TERRIBLE about labeling pictures? Because I am). Clearly Becca was already trying to wear some sort of tiara:

One morning I discovered that my daughter knew how to climb into her brother's crib.

When Becca was about two, this is what "Go get ready for bed" meant:



Josh had the softest, wispiest hair so I let it grow and grow... until that time I gave him a buzz-cut and he's been sporting a Greg Brady WhiteBoy 'Fro ever since. Unless I cut it myself, in which case he looks sort of like he's got the mange. #TrueStory

There were middle-of-the-night phone calls with doctors on the other end of the line telling me that they didn't think THIS twin or THAT twin would make it through the night- so we'd rush to the hospital to sit and put our hands in the "baby terrarium", as I thought of them, and listen to the beeps and the whooshing of the ventilator and wait for the inevitable. There were six months in the NICU and 3 or 4 Thanksgivings and Christmases spent in the hospital. For awhile I thought they were going to name a wing of the children's ward after us, or at least keep "our" room in reserve.

There was RSV and BPD and ROP and a bunch of other things with initials that I barely understood.
There was double hernia surgery and laser eye surgery and surgery to correct crossed eyes. 

There were staph infections and even a broken arm that was caused by changing my son's shirt whilst in the NICU - he of the tiny little brittle bones. There were breathing treatments and nebulizers and oxygen tanks and albuteral and lasix and digoxin and tegretol and synthroid and constantly changing medications and frequent seizures and paralyzing fear (well, that last thing was *me*).

I remember a tiny Becca setting her pacifier down in something that had spilled...she picked it up, took a suck, and said, "What the hell is all over this?!" It made me laugh so much that I couldn't even correct her.

I remember one single sentence of absolutely clear speech from Joshua in 21 years...he was sick and angry and yelled, "I WANT MY BOTTLE!"  It was astounding and amazing and thank goodness my mother witnessed it or I would have thought my ears were playing tricks on me.

And now... TWENTY ONE. 

(or The One Where Joshua Gives Duckface)

This milestone is especially important for Joshua, as he has already outlived all early predictions of life-span. Though it's a little like living under the Sword of Damocles, we do not give in or give up. And despite the fact that they were and are so fragile health-wise, for the last 10-12 years I can count on one hand the number of times they've had to go to the doctor or hospital. 

How could I not believe in miracles? When I look upon those miracles every day of my life.

I love you, my babies. I have been and will always be thankful for every breath that you take, every blink of your eyes, every morning that you wake. I love you with everything inside me.

You still make me laugh, you still make me cry, you still make me want to smack you upside your silly little heads.

If all the world was a beach, I would love you more than all the grains of sand added together. Times infinity.