so, joaquin's story aired on wednesday (4/22/09) on the local NBC affiliate, KVOA 4.
it's friday, and we just learned that his story has been picked up by cnn.com
Big Love,
Ghery
Friday, April 24, 2009
Thursday, April 23, 2009
nice...
two posts, one day? yup!
so, joaquin had his typical wake-up, go pee, sit on the couch, have a few head-drops, then a 30 second seizure today. unfortunately, pretty ordinary these days.
anyway, after we up'd his morning dose of Lamictal (Dr.'s orders), nothing. no seizure activity, no head dops, no staring spells... nothing. probably a fluke, but what a GREAT DAY! little victories, folks... little victories.
stay tuned, this revolution will be televised! maybe not basic cable, but pay-per-view, for sure!
Big Love,
Ghery
Ev'ry 'ting gonna be alright. -Bob Marley
so, joaquin had his typical wake-up, go pee, sit on the couch, have a few head-drops, then a 30 second seizure today. unfortunately, pretty ordinary these days.
anyway, after we up'd his morning dose of Lamictal (Dr.'s orders), nothing. no seizure activity, no head dops, no staring spells... nothing. probably a fluke, but what a GREAT DAY! little victories, folks... little victories.
stay tuned, this revolution will be televised! maybe not basic cable, but pay-per-view, for sure!
Big Love,
Ghery
Ev'ry 'ting gonna be alright. -Bob Marley
i know, i know...
i know... it's been a few days, but here's the cath-up...
the last few days have been heavy on joaquin. lots of head drops, and the occasional full on seizure (less than 30 seconds, luckily).
the news is: joaquin's story was on the news last night (www.kvoa.com). great feedback, so far.
more news: today, we up'd joaquin's morning dose of lamictal from 10mg to 25 mg. he's bit drunk, but haven't had any episodes, yet (other than this morning... but that was seconds after taking his meds).
i can see the sparkle in his eyes... it's coming back. you'll see.
Big Love,
Ghery
the last few days have been heavy on joaquin. lots of head drops, and the occasional full on seizure (less than 30 seconds, luckily).
the news is: joaquin's story was on the news last night (www.kvoa.com). great feedback, so far.
more news: today, we up'd joaquin's morning dose of lamictal from 10mg to 25 mg. he's bit drunk, but haven't had any episodes, yet (other than this morning... but that was seconds after taking his meds).
i can see the sparkle in his eyes... it's coming back. you'll see.
Big Love,
Ghery
Monday, April 20, 2009
SUNDAY...
mellow day. Joaquin had a rough day on Saturday, so we figured we'd keep it low-key for the day. Breakfast, bigbox store, back home to clean... We chilled most of the day, as Joaquin had his occasional head-drops, and only two "damn it, here we go, again!" moments. They only lasted a few moments, and back to 'good.'
Suprisingly, Maceo and Joaquin took their naps at the same time, so Bec and I just hung out on the couch, not doing a thing... NICE.
We decided to grill some meat, and eat outside... nice day, and all.
It's getting better... I saw more of that sparkle in Joaquin's eyes this morning. We'll get there.
Big Love,
Ghery
Suprisingly, Maceo and Joaquin took their naps at the same time, so Bec and I just hung out on the couch, not doing a thing... NICE.
We decided to grill some meat, and eat outside... nice day, and all.
It's getting better... I saw more of that sparkle in Joaquin's eyes this morning. We'll get there.
Big Love,
Ghery
Saturday, April 18, 2009
Here we go...
Let me catch you up...
I grew up epileptic. Small town boy, and musician, moved to the big city as FAST AS I COULD!
Lived a fast life, until I met HER... Becky... The love of my life. Got married in September of '03, had a bouncing baby boy (Joaquin) in November of '05, quit my job, bought a record store in '07, and had our precious Maceo in September of the same year. Good times.
So, things are moving right along, when in November of '08 Joaquin had his first seizure. CRAZY! After the EMTs took Joaquin to the hospital, we buckled down and thought "Damn, he might have Epilepsy." Sad day.
A few months pass by, and no other episodes. Back to normal, right? NOPE.
January of '09... 2 more big seizures. Let's get him diagnosed. YUP, EPILEPSY. It's cool, we'll do everything we can to get through this. BRAINSTORM... We built him a website (www.joaquinthebean.com) based on Epilepsy Awareness. Joaquin holds a dry-erase board with whatever message you want it to say, we snap the pic, and in no time you get the pic in your email! We even had t-shirts made up for the site. Any penny donated goes straight to the Epilepsy Foundation of AZ. Feeling good about doing good things.
February comes and his seizures start taking on a different shape and becoming more, and more, frequent. DAMN! We're admitted into the hospital for 'round the clock monitoring to try and find some answers. Getting closer. In this time we meet our new all partner in our fight for getting Joaquin better, Dr. Monica Chacon. She's great, and we all respond to her VERY well.
March, lots of ups-and-downs. We even had a few days with NO episodes. NICE...and scary...
April... Here we are. Some days are better than others, but we're still having the daily multiple episodes. Somehow, we're getting through it.
Bec and I have spent MANY nights crying, trying to find solace. We're a strong unit. In our house, the motto is: Family is EVERYTHING...And without it, there is NOTHING.
So, here's to our family: Nino, Nina, Boola Boola, Jimmy Jam, Linda, KristinaMolina, Sherrie, Jane, Krystal, Kendra, Nanas and Tatas, Tios and Tias, all the cousins... Without you all, THIS IS IMPOSSIBLE!!!
Maceo has been an angel throughout the entire ordeal. He knows when something's up. Joaquin fights hard everyday, and if you look at him just the right way, you can see that he's dying to get back to running around the store, making a mess, and just being your typical 3 yr. old kid.
We're going to get though this, just you wait and see, but until then we'll fight every step of the way.
Just yesterday, Joaquin underwent another EEG. We're waiting on results. Regardless, we love eachother, and that's all we need... Just ask Paul and John.
Big Love,
Ghery
P.S. For those of you going through you own battles, know this... It's all about little victories... A smile from your kid that you haven't seen in a while, a kiss from your wife/ husband from out of nowhere, your kid falling asleep in your arms... little victories.
I grew up epileptic. Small town boy, and musician, moved to the big city as FAST AS I COULD!
Lived a fast life, until I met HER... Becky... The love of my life. Got married in September of '03, had a bouncing baby boy (Joaquin) in November of '05, quit my job, bought a record store in '07, and had our precious Maceo in September of the same year. Good times.
So, things are moving right along, when in November of '08 Joaquin had his first seizure. CRAZY! After the EMTs took Joaquin to the hospital, we buckled down and thought "Damn, he might have Epilepsy." Sad day.
A few months pass by, and no other episodes. Back to normal, right? NOPE.
January of '09... 2 more big seizures. Let's get him diagnosed. YUP, EPILEPSY. It's cool, we'll do everything we can to get through this. BRAINSTORM... We built him a website (www.joaquinthebean.com) based on Epilepsy Awareness. Joaquin holds a dry-erase board with whatever message you want it to say, we snap the pic, and in no time you get the pic in your email! We even had t-shirts made up for the site. Any penny donated goes straight to the Epilepsy Foundation of AZ. Feeling good about doing good things.
February comes and his seizures start taking on a different shape and becoming more, and more, frequent. DAMN! We're admitted into the hospital for 'round the clock monitoring to try and find some answers. Getting closer. In this time we meet our new all partner in our fight for getting Joaquin better, Dr. Monica Chacon. She's great, and we all respond to her VERY well.
March, lots of ups-and-downs. We even had a few days with NO episodes. NICE...and scary...
April... Here we are. Some days are better than others, but we're still having the daily multiple episodes. Somehow, we're getting through it.
Bec and I have spent MANY nights crying, trying to find solace. We're a strong unit. In our house, the motto is: Family is EVERYTHING...And without it, there is NOTHING.
So, here's to our family: Nino, Nina, Boola Boola, Jimmy Jam, Linda, KristinaMolina, Sherrie, Jane, Krystal, Kendra, Nanas and Tatas, Tios and Tias, all the cousins... Without you all, THIS IS IMPOSSIBLE!!!
Maceo has been an angel throughout the entire ordeal. He knows when something's up. Joaquin fights hard everyday, and if you look at him just the right way, you can see that he's dying to get back to running around the store, making a mess, and just being your typical 3 yr. old kid.
We're going to get though this, just you wait and see, but until then we'll fight every step of the way.
Just yesterday, Joaquin underwent another EEG. We're waiting on results. Regardless, we love eachother, and that's all we need... Just ask Paul and John.
Big Love,
Ghery
P.S. For those of you going through you own battles, know this... It's all about little victories... A smile from your kid that you haven't seen in a while, a kiss from your wife/ husband from out of nowhere, your kid falling asleep in your arms... little victories.
Introduction
My name is Ghery. I've got the coolest wife (Becky), and two GREAT kids, Joaquin and Maceo.
A few months ago, Joaquin was diagnosed with Epilepsy. It's been a rough road, so far. Things are getting better... SLOWLY!
I'll be adding posts (hopefully daily) to let you know how a strong wife (Becky), a scared dad (me), an angelic kid (Maceo), and a tough, punk rock kid (Joaquin) get through our little adventures.
Big Love,
Ghery
A few months ago, Joaquin was diagnosed with Epilepsy. It's been a rough road, so far. Things are getting better... SLOWLY!
I'll be adding posts (hopefully daily) to let you know how a strong wife (Becky), a scared dad (me), an angelic kid (Maceo), and a tough, punk rock kid (Joaquin) get through our little adventures.
Big Love,
Ghery
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