Joaquin The Bean

Revamping for 2010

2010-01-12T14:22:00.000-08:00

Hello everyone...

We are looking to revamp Joaquin the Bean for 2010.

Get some new merchandise online, new updated posts, benefit shows, etc...

JTB is going to have a new style and look!

Punk Rock!

The Past Year...

2009-11-10T07:27:00.000-08:00

So...as of October 22nd of 2009, our anniversary date has arrived.

The anniversary of our 1st seizure. Most people look back and reflect on what a great year...I think I look back and am just grateful for getting through it with my sanity in tact.

Joaquin will be 5 month seizure free on November 12th. YEAH! Woo Hoo!

It's been such a crazy ride.

Our diagnosis, new neurologist, getting hospitalized, learning Joaquin displays 3 different types of seizures, starting and weening from a bunch of meds, EEG's, Dr's visits, maintaining a quality of life for him, and finally getting to a point where we are seizure free.

Through out this year, we have really strived to keep a positive outlook on things. I've had my days that were not my best, but for the most part, it has been such a great experience.

November is Epilepsy Awareness Month and also Joaquin's birthday...so here's to my little man!

1st Day of Preschool!

2009-08-12T10:43:00.000-07:00

Today, Joaquin started his first day of preschool. He has been talking about it for months! He would say..."In August, I'm gonna be a student".

It's been such a crazy rollercoaster ride with his epilepsy that we were worried he might not be able to start school this year. BUT HERE WE ARE!

We have been seizure free for almost 5 weeks! YEAH!

I wonder what the school year will bring, he is going to grow so fast!
I thought I'd be a wreck, but I think that I was so busy dealing with the Administrator that it disappeared. I am so proud of my little man!

Joaquin the Bean is now a student!

REGISTER

2009-07-29T14:02:00.001-07:00

Our first trip out of state...

2009-07-29T13:52:00.001-07:00

So...We are taking an extended weekend trip to San Diego. This is our first trip out of the state, since we have been diagnosed. Feeling pretty good about it, we have been seizure free for almost 3 weeks.

We have our Emergency meds and we will have my parents with us, so I'm not so apprehensive. My mom used to work in the ER and was an EMT for the fire department.

We are going to welcome my brother and his troop home from their 2nd deployment. Hoping the trip goes well and we have no major issues.

We'll be posting from the road! Check back for pics!

Grandma and Grandpa are coming to visit!

2009-07-21T11:05:00.000-07:00

I am so excited...my parents are coming to visit from North Dakota. My brother is coming back from his 2nd deployment and we are all going to San Diego to welcome him home!

I'm hoping it will be a fun trip...we are taking an RV from Tucson to SD with 7 of us!

I'll post lots of pics when we get back !

The Good, The Bad and The Ugly

2009-07-14T11:45:00.001-07:00

Caring for someone who has epilepsy is such an interesting journey. Some days are just picture perfect...no seizures, almost seems like this condition is non existent. Then there are the bad days...most are very challenging. Just when you think you can't take anymore bad days, the ugly one arrives. The day that you feel pushed to your ultimate limit...the day that you can't take anymore issues and then your son looks at you and says" I Love You with all of my heart"...I feel like an ugly monster for getting so mad and frustrated. I am Ugly, not this condition, not my son, me. But I'll chalk this experience up to another lesson that Joaquin has taught me. No matter what kind of day I have, the good, the bad, the ugly...being his mom and sharing everyday with him and his brother...daddy too, is the best thing in the world. THE BEST.

Today, after speaking with our Neurologist, we have to get our son tested for his IQ. She feels that his behavior may be due to the fact that he's bored. Bored? Ah I get it...my dear son is just a little beyond what I am capable of teaching him and showing him.

I'm excited that he starts preschool in August. I can't wait to see him grow! He will be going to a partial spanish immersion school...our friend teaches Arabic there, and says his son love it...hopefully Joaquin will too!

Punk Rock!

My Heart Hurts Today

2009-07-01T19:30:00.000-07:00

Ah...I think blogging has helped me in dealing with Joaquin and his epilepsy. We've been dealing with so much lately...

We had an EEG in May and the results were so positive. There was no epileptic activity on the reading. NONE!

His neuro explained that his medicine is keeping his seizure at bay. Now we just need to continue to monitor his growth to adjust his meds accordingly.

She explained that along with no activity, that he is on a very low theraputic level of meds. Even better news.

Since we have weened him off of Klonopin and put him on Frisium, his appetite came back and he put on 3 lbs in a month. We had a rough weekend of breakthrough seizures. Not bad, we adjusted his meds and were good.

We then decided to try to ween him from his Frisium and after one day with just 5mg less, my little terror was becoming my sweet boy. This medicine has really brought out the nastiness from within. After only 4 days off of a single dose, we had a big drop attack...my little man hit his head really hard. I thought I might have to take him to the ER to make sure he didn't have a concussion. So drop attack = back on full dose of Frisium.

We went 7 days seizure free and he had a really quick one early in the morning of June 21st. Not even 5 seconds. All was good, his doctor had adjusted his meds again to get him to where he's supposed to be, and then today...after 10 days seizure free...

We had a seizure...I was getting lunch ready for my DH and our youngest came out of their playroom and grabbed our friend, who was the closest to him. He dragged him into the room and pointed at Keen'R. And of course, he was in his post ictal state....

After everything calmed down, I couldn't stop thinking about how proud I was of my youngest, to have been smart enough at 21 months go alert someone about his big brother. Keen'R bounced back within minutes from having the episode and was just fine.

We are getting better day by day with becoming seizure free...but
My Heart Hurts Today

Little Victories

2009-05-26T11:14:00.000-07:00

So, today, is 14 days with no seizures! I'm not really sure if it's real sometimes.

His last seizure was a quick one, after 2 days of no seizures, which was becoming the normal seizure pattern. Then 2 weeks ago, we had 2 days no seizures and then his meds were adjusted...and usually we see some seizure activity then, but this time, nothing. NOTHING. NADA. ZERO. ZILCH.

We took him off of Klonopin, which just made him seem drunk all the time. We replaced it with Frisium, and my little boy is starting to emerge. But it came with some less than desirable side effects... :0(

A person with epilepsy can probably agree with me, when I say this condition is full of ups and downs. When things are good, they are good, but when things are bad...it's a rollercoaster!

Being seizure free is great, but I also embrace each day with the antipaction...of when is the next one...

If I have learned anything, it's that Joaquin has been a trooper through all of this and that he gives me strength to get through each rough day.

So here's to all of those living with the ups and downs of epilepsy...Keep thinking positive...You may have epilepsy, but it doesn't have you!

www.joaquinthebean.com

Quick Post today...

2009-04-24T14:24:00.000-07:00

So yesterday we posted, emailed and twitter'd about Joaquin's video debut...thought I did what I could...tried to reach as many people as I could...was kinda wondering where it would go...

Today, my DH is reading a comment on Joaquin's website and finds out that someone saw his clip on CNN's website.

First thought was...Wow. Second thought...Hell Yeah!

I really want to be as involved as I can with exposing information on epilepsy as I can...really need to come up with some cool weekly tidbits for Joaquin's site...puttin' my think' cap on now.

So to all of you who visited our site or watched his video...I thank you. Just by clicking on his site, was a step forward for helping others become educated on epilepsy.

My best to all!
Becky

psst... here's the link to CNN's site...
Joaquin's story on CNN

Joaquin's TV debut...

2009-04-23T12:36:00.000-07:00

Last night, Joaquin made his debut on local TV. The local NBC affiliate did a positive story on Joaquin and his everyday ordeals with epilepsy. Just wanted to share it here and also encourage anyone who reads this to share it with others.

This week...

2009-04-18T09:30:00.000-07:00

So this week was like the rest...until Thursday!
Joaquin was scheduled for a EEG on Friday and that meant that we had to sleep deprive my little man. :(

On Thursday, my DH and I went to see a Dr. for weight loss and have started back down the path to getting healthy. Amazing what 2 kids and moving to a new city can do to you!

So after a long day at our shop, we had to keep Keen'R up at least 2 hours past his bedtime...my DH stayed up with him until midnight! 11pm would have been good, but we wanted to make sure he was really deprived!

5am and I've got the deed of getting him up and keeping him awake for the first part of the day! It was rough, my poor baby was having head drops and small seizures for almost 2 hours. It breaks my heart to see him fight them off.

We go and take care of a couple errands and fight off his sleepiness until noon...not only is he having head drops and szs...but he's got a cough with a low fever...which keeps his seizure threshold lower. Needless to say, it was a tough morning. Not only trying to keep a 3 yr old awake, but now I'm on this diet and have to drink 3 liters of water a day and have to pee almost all the time. Nice huh?

Joaquin does great with the EEG and we go and get him a flashlight...it's what he wanted as a reward for the EEG. This take a bit...no freeways in Tucson...so it's surface streets all the way! He still has not slept yet. Only the 20 minute nap during his test.

We get home and try to get him to nap...he is not having it...Cartoons please. So we try to keep it mellow and he hangs out watching cartoons, while DH and I take turns on the elliptical...gotta keep going...or I will fall over. After dinner, we all go to the room and read...Joaquin is finally laying down, but refuses to sleep. My baby is so tired, he can't sleep.

It took until almost 9pm for him to fall asleep. Then he did it, he slept the entire night without an episode! God bless my little man!

Please share his site with your friends.

2009-04-03T13:56:00.000-07:00

So I read an interesting statistic the other day...1 in 10 people lives with epilepsy. That's crazy when you think that 1 in 150 babies are born with autism. Many more people are affected by epilepsy than we really think. And it's still such a misunderstood condition.

anyway on the bigger and better... Joaquin's interview with our local NBC affiliate is set to air on April 22nd...I'm so excited. I really hope it was made into a positive piece. That's why we called them in the first place, to run a happy story on a great kid. I will post the interview once we get a copy.

We are really trying to spread the word and thank anyone who's given us a hand...our newest fan...Fortune Cookie...thank you very much.

So that brings me to my next item on which to blog...please go to his site and request a personalized sign...it can be a quote, saying, phrase, or anything you can think of... read his story, request a sign and share this website with your friends!Peace out...

We gots some good news...

2009-03-09T19:53:00.000-07:00

So today we got some very positive news.

Joaquin's neuro feels that we will have his seizures under control within the next few months. And her goal is to have him completely seizure free and medication free within the next few years.

I was overwhelmed with the optimistic prognosis, but I still understand that it may be more than a few months to get things completely under control and that it may be a bit longer before we are medication free.

I'm excited for Joaquin, but still feel a bit guarded...can it be true? I guess I'll just have to believe and see! Thanks to everyone who has supported my family and I through this crazy roller coaster we are on!

Family...without it there is Nothing.

2009-02-25T15:31:00.000-08:00

Our family motto is: "The most important thing in the world is Family. Without it there is nothing."

This past couple of months has really made those words real. But the funny thing is...I've realized that the family that has been there for us...are our true friends.

Joaquin and Boola Boola

It's Boola Boola, who Joaquin wants to talk to after a seizure, and is going to do the Epilepsy walk with us, because it's important to him...it's Jimmy Jam, who gives them high fives everyday...and lets them finish his soda (Sorry Jimmy)...it's Tia Aissa, who worked her connections to help us out with T-shirts...it's Linda and KristinaMolina, who pick them up and hug them...spend time with them and are constantly helping them with everything at our store!

It's these simple people, that help us face the challenges of dealing with Joaquin's epilepsy...and today, I am very thankful to have them in our lives.

p.s. to my family in ND...thank you for all you do for us...we love you all very much and miss you. I know if we lived closer, you would also be the positive influences in their lives...XOXO Bec

Hopin' to sleep in today...

2009-02-07T17:19:00.000-08:00

So I was hoping to be able to sleep in on Saturday...I would keep the boys at home and maybe go to our store to help my husband in the afternoon.

But at 4am this morning, Joaquin woke up from sleep and mumbled something and then laid back down...Ghery and I looked at each other and both were thinking...okay here we go...another seizure is coming. I think we both just laid there for about an hour with our eyes closed waiting for it...but it seemed that he had just woken up and gone back to sleep.

That was until almost 8 o'clock, my dear hubby had gotten up to get ready for work and had turned on the shower to get in and I heard the sound Joaquin makes when he's having a seizure. I jumped up and called out to Ghery. Within seconds he was at the side of the bed and we were getting Joaquin onto his side making sure he was okay. I had left the medication in the car last night, so I had to rush out to the garage and grab it.

We called 911 and the EMTs, god bless them, were there in no time. I really appreciate how calm and informative they are. They don't make you feel uncomfortable at all with the situation. His seizure only lasted about 5 minutes, but it felt like 15. These episodes sure don't get any easier.

I'm not sure why, but today it seemed like I couldn't pull myself together fast enough to be of any help to anyone. I guess I was having an off day.

Maceo is an angel throughout these episodes. He just kind of sits back and lets us take care of Joaquin and hangs out...

Joaquin had his blood checked and all was good, they increased his medication and we'll be calling his Neurologist on Monday!

So needless to say, I didn't get to sleep in today...probably won't tomorrow either!

Please don't forget to check out our website...www.joaquinthebean.com and spread the news...

Taking action as a family...

2009-02-05T13:20:00.000-08:00

Hello Everyone,

Welcome to Joaquin the Bean blog...

This blog was started to share our great story, our new website and to also help spread the word about epilepsy.

My son, Joaquin, was diagnosed this year with epilepsy and my husband and I decided to take action and become educated and involved.

Not sure how we could make an impact, we just started to research epilepsy and educate ourselves.

A few days ago, an idea came to my husband after our friend had seen a picture of our son holding a sign and asked if she could borrow him, she had a few signs she'd like made! Thanks Zana! So, we decided to create a website, where you could request any phrase, saying or quote, we'll snap the pic written on a sign, being held by our son and presto...You get a custome sign in your email. And the great thing about it...we aren't charging for the photo, we are simply asking for donations, which will be given to the Epilepsy Foundation to help with research and awareness.

So please take a few moments and check out our site....www.joaquinthebean.com

Also check back and read our story, I'll be adding it soon!

As we say in our house...Punk Rock dudes...