Anniversaries?

Are anniversaries always a good thing?

This school year marks our 5th year living with the beast.

Other anniversaries of that summer 5 years ago have come and gone,  No biggie that was our life.

This anniversary is different. I don't consciously think about it and what our eyes , and our precious baby girls eyes, have seen, but I cant seem to find minutes with dry eyes lately.

I HONESTLY don't recall , but a few hours  of our past five years in memories.  However, this summer has made it real. 

We used to be able to just love on Jake, explain" things" to Addison and even Coop and everything would be ok.


As I was thinking about our first hospital stay a couple weeks ago, I  received the most awful text ever.  I finally got a sense of what my closet friends and family were feeling when I texted or called about what was happening to Jake.  Brandy, cowriter on this site, was riding in an ambulance with her baby girl just 2 weeks ago.  A 2 hour ride, not knowing what would be said after those ambulance doors swung open,  a medical team rushed to your baby and pushed you aside, and  drs poked and prodded on that baby some more. 

Sweet E had not been acting right and the  mothers/grandmas gut kicked in.  Once again people/dr.s tell you know biggie. But, a mother knows.

 Emery and her parents lives have changed, on our 5 year anniversary

Just as I was praying to God to take me not ,in an ambulance, on a sweet summer day, Brandy did the same, I am sure

There lives are now forever changed as well. 

Type 1 , juvenile diabetes


Here Brandy was trying to take my pain away, not understanding how God could be so cruel  to a little kid, supporting Epilepsy, and she finds herself now in the same boat.

SO... This anniversary IS VERY different.  We hit our big 5 year anniversary and it is HARD.

5 years ago today I was in a hospital bed for the third week  with our boy.



2nd hospital , 3rd week,  weeks not seeing my baby girl, wondering what the hell is happening to our baby boy, weeks of useless medication, needeless needles, mri's, ct's, all telling us nothing about was is wrong with our first son.,

BLAH,BLAH,BLAH...thousands of seizures later.  His brain took the toll.  he used to be the "smartest" in his class, the most articulate, the most creative and definitely the most witty.  I see Coop and Jake at the same "stage" at 3, but Jake was actually even more "with it."( those of you who know Cooper know what I am talking about)  smart kids these boys are.  I stare at Coop everyday, just certain he is about to have a seizure, or just had one, as he is the same age as Jake, when "Jake happened.",

So, on the eve of another school year, our boy finally knows the hand he has been dealt. Tthe damage the beast has done on his brain.

He is dreading school. dreading to the extent of hiding, crying, convincing...me that he does not need to go. 

You see, he NOW realizes he has to work harder than his peers to get the same result.  This boy loves to read, however he does not see the words the way others do.  He loves to write, but his hands don't work the way "normal" kids hands work.

He recognizes this now.  Heartbreaking for parents.  Absolutely heartbreaking.  This  is certainly not our pity party, but more a recognition of how much I hate the beast.

Tucking one in with glitter in her eyes, and another one  who sent me to crawl in the bathroom and cry like a baby.


Tonight was hard, real hard.


This is not what I would have imagined our life to be, but it is ours.

Tomorrow will be easier.

Isaiah 41:10  fear not, for I am with you;  be not dismayed, for I am your God; I will strengthen you, I will help you,  I will uphold you with my righteous right hand.

They're back!

I can not find the words tonight, and have not for a long time, hence the no posting.

I am already feeling a "sigh of relief" just starting this post, though.  The venting "out loud" is a great therapy!:-)

Long story short.....back in June i suspected Jake was having seizures again.  My suspucions started on the top of a water slide @ our gym.  Jake and i were taunting each other about the race we were about to have.  suddenly, but slowly he was gone.  His eyes rolled back, and he was gone.  it was only for a matter of seconds, but i knew "that look."
  I immediately raced Jake down that slide and called Brandy in tears.  We both kinda blew it off, but deep down I think we both knew a mommas heart never lies.  She and I both knew...

I kind of watched , or stared , or obsessed over him the beginning of the summer.  my gut told me something wasn't right.  His behavior started getting very erratic, his adhd was out of control, his emotions (which he has never shown), were heartbreaking.

Finally one morning, as he and I drank coffee and watched scooby doo , the only ones awake, on a beautiful summer dawn, i saw it.  Not only did i see it, he definitely felt it.  he told me he was hot, his head hurt and he felt "irritated."  the next thing i knew our boy was gone....the look on his face was the look i had seen too many times before.  i could see in his eyes him asking for my help.  he was pleading to me to unleash the beast. 

I sat, I could not do anything.  I was lost.

how the hell is this happening again?

I called the dr. 

He didn't believe me.  We got an egg in early June it showed nothing, except crazy mother syndrome.

long story short...it kept happening, I finally caught a good one on video, we went for 2 more eegs, and low and behold Jake is having seizures.


so we are back at adding meds, adjusting meds and having a 7 year old sleep with us.

seizures suck!

December eeg

Here we are aready in March and still have not updated since the Decmeber egg.  Trust me when I say being a stay at home mom is much more than I expected! LOVE it , wouldnt change it for a minute, but it sure makes me wonder how I ever got three kids out the door and fed by 6:45, to three different drop offs, while selling the house and leaving it in "showing" order, to only return at 6:00pm  feed the crew again for dinner, finish the work from my work day, spend some time with the husband and start all over and do it again the next day.

Shoot that was easy compared to this!;-)

December eeg was very different from the one before.  I could feel it in my bones. I could sense it from the eeg tech.  Jake, again was supposed to be in for the entire day, but was only there 1 maybe 2 hours before we were "released." 

I knew in my gut it wasnt the "happy ending" that we had a month or so before.  I was told to go home and they would call me after the weekend, or maybe a week or so to report the results..  Yeah right!! I said, "no , i was promised we would be told if we could take drugs away or not..."  so after a little waiting, dr h came and confirmed my worst fears..we have seizure activity.

booo..hate to hear that.  however, he said the activity he saw was activity that many people are walking around with today and have never and will never see any effects of.   He wanted to be cautious though, and did  not want to take away any more meds at this time. 

Jake is still on felbatol, and clobazam, and a butt load of vitamins, but he didnt have to add back the Depakote.

Since losing the depakote, Jake's background slowing has disappeared!  within 4 weeks minus this drug, it is gone!  He has had it since Doose became a true diagnosis almost 3 years ago , to the day. 

Background slowing in basically a "fog" that Jake has been in since having seizures and being on so many meds. It is what has caused the drooling, trembling, stuttering, and out to lunch personality.  It is the static on the tv that is hard to see through, because you're focusing so much on trying to see through it.

Jakes slowing was 3-4.  "normal" children/people have a slowing of 8 or 9.  in other words his was VERY slow.  that static was very intense for him.

since the depokote drop, Jake has started to read, ride his bike, take on more and more friends and appear as a more "normal" child.  he can run with out falling over or holding his arms like a T-rex and most importantly, we can feel our little boy coming back to us.  There are many, MANY more hurdles to jump, but we will take what we can get.

I certainly wish we could have rid his little body of more drugs, but am certainly happy with the results thus far.

thanks for praying for our little man! there are many more things to update! come back tomorrow and I will fill you in!

Trust in the LORD with all your heart,

and do not lean on your own understanding.
In all your ways acknowledge him,
and he will make straight your paths.
Proverbs 3:5-6

Doose Syndrome Epilepsy Alliance

I would LOVE for everyone to go check out the new Doose website!  It is updated and gorgeous!

http://doosesyndrome.org/



Jake's story is on there, as well as several other kiddos who are fighting the beast with him.

What's amazing about this site and Doose/Epilepsy awareness, to me, is that when I was searching for ANY sort of information on Myoclonic Asatic Epilepsy, aka Doose, just 3 years ago, there was nothing to be found.  What we did find was not encouraging news at all.  We would have rather not read any of it.

The prognosis was always very bad: mental retardation, possible death, lifelong seizures, learning disabilities etc, etc.

 I am quite certain that even Dr. H had his hands full with Jake and his case.  I vividly remember the look in his eyes...the look of compassion and yearning to help our baby boy, but not knowing exactly how to do it.  I think in some sort way Jake was a little Guinea pig, a learning tool.  They, the Dr.s, were learning, just as we were also learning. 

The difference between Dr,.H and the other neuros, is that he tried!

He tried to save our little guy and bring him back to us.

 We left one neuro after a week hospital stay and the parting words were "we don't know, he is a hard case."  and the other; we were fired from!

Dr. H and the Cook neuro team fought this battle for us and even let us drive with them through it, instead of insisting we do things "their" way. 

Over the years, this  unawareness and these questions are changing to ones of more certainity. 

Changing thanks to awareness!

Thank you all for all you do in helping to raise awareness for this horrible disease.  The more we talk about it, and the more we share, the more everyone will become aware and try to fight the fight with these precious kiddos!

What can you do to spread the word?

Awareness without action is worthless.
Phil Mcgraw

1 down 2 to go

In Mid-November Jake and I went back to Cook Children's for, maybe the most anticipated EEG yet.  The one that tells us whether or not his brain is still being bombarded by seizures.  The one, that once again, reset our lives forever.

As always, Jake was super stoked about going to Cook's and seeing Dr. H.  He was a little annoyed he would not be getting an iv or having blood drawn.  Crazy Kid!  But  his spirits lifted when he saw all the leads (wires) that got to be glued to his head.

Jake was a super trooper getting hooked up with the leads.  Another thing that has never really bothered him.  I think he gets more pleasure from it, than pain, actually. He and the tech were cutting up and really laughing hard, until Jake said  "I better stop, or I'll pee my pants!":-)

The intention was to start the eeg at 8am, have an 8 hour eeg and then meet with Dr. H at 4:00pm to go over the results.  Jake was hooked up almost 2 hours when the tech left and grabbed Dr. H.  As he walked in, my stomach was in knots and I quite possibly could have thrown up! The anticipation of what he was goingto say was more than I could handle.

The last time a tech left after only a little bit of watching the eeg, and went and got the Dr., it was not good news.  Jake was seizing more than her wasn't and had to be admitted ASAP.

I completely had flashbacks as they both re-entered the room on this day.

However, as life has it's valleys, it most certainly has it's peaks as well.

Jake's EEG was so clear, they thought he was ready to go home!
As, this also meant a med wean...one that I was VERY much excited for, it also meant that "security blanket" for me was going to be taken away.

I voiced my concerns, so  we all agreed to let him sleep while running the eeg as well, as that is when most of his last lingering seizures were happening.

So he slept.....

and I watched....

After a 2-3 hour nap, the EEG was still clear!
I almost couldn't believe it!

Dr, h instructed me that we were to wean what little Depakote he was on.  The wean should been done instantly and been more of a STOP than wean.  I was too chicken though, and insisted on weaning anyway.:)

The wean has been done now for about 3 weeks.
It is completely amazing the transformation we have seen in Jake!
He appears so much clearer. 
His hands don't tremble, he doesnt drool near as much, his handwriting and desire to do school work has done a 180, and he can carry on a "real", clear ,vivid conversation.  His whole thought processing is just incredible.

I can not even imagine the drug induced fog he has been living in for 3 years straight.  His little brain having to metabolize all these drugs while also fighting the electricity that are seizures is just completely baffling to me.

However, We are not done yet.
He still has 2 more to go.

Jake goes back Friday for another 8 hour eeg.  If that one is still clear, the Felbatol is the next to go.

Yikes!

I can't believe the wish we have been wishing  , for 3 years, may actually be coming true.

Please keep Sir Jake in your prayers, as he battles this damn beast.


Psalm 18:32-34 the God who equipped me with strength and made my way blameless. He made my feet like the feet of a deer and set me secure on the heights. He trains my hands for war, so that my arms can bend a bow of bronze.

embarrassed!

I am so embarrassed, guilty and dissatisfied with myself!  seriously has it been since May that I have last posted?

May?? uggh hate that i have let it get that long.  I keep saying..every day since the last post...."
I will post tomorrow."  obviously that has not happened.

When  I came and looked at the blog tonight I  now know why it has been so long.  I have mostly written about hard, bad times.  That was easy for me.  It was my release.

I know it's cliche, but I truly believe no one can truly understand.  probably most of my Doose mommas,and my cook epilepsy mommas, but no one can truly understand what hundreds of seizures a day really feels like.  The trips to the er, the not knowing when another one will come, the feeling guilty for having to ask any someone to help with another Dr. visit, er outing, or car pool.  Thge anxiety it has created is like no other.

So those were the hard, bad times, right?   Now, looking at this page, hearing the music, it takes me back.  I have avoided it on purpose. I often wonder who I was before it  all .  What i used to be like?  Did I worry 24/7, not sleep at night, like I do now? Was I a nervous nelly?  Did I stress and over think every little moment of the day?  Did I every let loose and relax, as I can't seem to do now? 

Jake's doing well.  he's doing VERY well.  and quite frankly i don't want to jinx it by writing about it. He is doing great, so great, even writing the words brings tears to my eyes. 

Jake has made great friends here and his kindergarten class is amazing (he is repeating kinder).  he is reading sight words, getting along with peer age friends, and even throwing temper tantrums :) He still VERY much struggles with writing and some social issues, but he has made great gains, since......

his last seizure on Thanksgiving Day 2010!!

so we will travel to Cook Children's in November for an EEG.  If the EEg looks good, Jake will start a med wean.

Crap...talk about worry!!! i am so very excited at the thought of one less drug, but of all the drugs, approx 10, he has tried I know Depakote had worked for him.  so Depakote would be the first wean.  the reasoning is because Dr., H believes, as do I, depajkote is the reason behind his constant tremoring hands, severe adhd, and lack of focus.  

If that wean goes ok, assuming eeg is clear, we will then go back to cook Childrensfor another eeg and another wean.

I ,honestly, i have not been myself in 3 years in regards to anxiety...just waiting, not sleeping, watching baby monitors, making sure he isn't too hot, too tired, too hungry.  I can only imagine it is going to be a million times worse in months to come.

Rather, I hope hope it becomes worse, as that means his eeg is looking good and we are detoxing our baby of these drugs!   I Will just need more drugs.:)

 Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life?" Matthew 6:25-27

Beautimos!

Well the Dallas Stroll for Epilepsy has come and gone again.  I can NOT believe it!!!  Seriously, it has been way too long since my last post and now even 1 week or more since the Dallas stroll for Epilepsy!  What a wonderful event! We had gorgeous weather, a HUGE crowd, and much love to go around.

Team All 4 Jake raised over $3,000 and our team grew to over 95 members!

My little brother, my mom, my sister in law and niece and nephew were able to join us this year.  How special that was. 

Unfortunately, with our busy lives, which is a great thing, I have not even had a chance to upload any pictures yet.

Busy lives, being a great thing, meaning.....we are now busier, as we don't feel the need to sit around the house and wait..... and watch..... Jake have seizures.

But, over Spring Break a dear friend, and an awesome photographer took some pictures of the twerps and I just had to share, as they make my heart melt each and every time I see them.  How do I choose which ones to post is the question...

http://orlalavellephotography.com/

Facebook

Children are not the people of tomorrow, but are people of today. They have a right to be taken seriously, and to be treated with tenderness and respect. They should be allowed to grow into whoever they were meant to be. 'The unknown person' inside each of them is our hope for the future.

-- Janusz Korczak

tough times

Yesterday was a pretty tough day.  I didn't expect it to be such,but geez it sure turned into one.  A couple of my awesome coworkers had asked me to talk to their club, as they are the sponsors.  Since Jake was inflicted with this dreadful disease, these ladies have been there supporting ALL 4 Jake every step of the way.  This year , their club decided they would make purple key chains to sell and all the proceeds would go to the Epilepsy foundation.  these kids and working moms, newly weds, and young teachers have stayed after school, spent time on weekends, and even used their own money for our cause.

So yesterday I went , as they made purple key chains, to introduce Jake and tell them a little about Epilepsy.

No big deal.

Now, those 30 minutes, are haunting me.

I LOVED being there for the kids.  I think they saw me as some strong person and Jake as a normal kid.  The questions they asked were absolutely amazing. 

But, I felt like a little insecure squirrel.

 I have not been in that place in a LONG time!  I have remembered and reminisced, but not like this.  watching Emmet's video with my peers and the students and telling them about Jake, I again caught a glimpse of what he has had to conquer.



Unfortunately, now I am more afraid than ever.   Afraid the beast will show his ugly face again. 

I can't stand that guy and what he did to us.  I hate those memories.

I hate that when Addison hears a siren she goes into fetal position and bawls hers eyes out, no matter where she may be.

I hate what he has done to our family.

I hate that we have a story to tell.

I hate this beast!

But I do love that I have over 100 Doose mommy and daddys telling, sharing and fighting for our story right now in DC!

The Doose Team has taken over DC this weekend for National Purple Day in hopes of turing that White House Purple!

All of this did happen for a reason, no matter how hard it is/may have been.



"Fall seven times, stand up eight"
Japanese proverb

Addi's story

It's been a while.

I feel like since Jake is doing better I don't have a reason to write.  Like people don't want to hear just the same ole' stories about what's going on in our life.  I struggle with things to put our there to the "public."  Like the negative, the worry, the pain, is a much better read than what I may have to share these days.  Don't get me wrong, we still struggle...in many ways, but gosh, looking back, I can't believe where we have been.  I know I say that often too, but today was just hard.....more on that tomorrow.

Because I struggle with his so much, and tonight I read a story of Epilepsy that struck waaayyy too close to home, and I am still trying to process all of it, my precious, sweet, 7 year old, and Jake's big sister will tell her story tonight:

Exodus 23:25



"So you shall serve the Lord your God, and He will bless your bread and your water. And I will take sickness away from the midst of you."

Gives me chills

I took jake to the neurologist on Tuesday.  It has been a long 3 months since our last appointment.  Not much ever changes at these appointments....I ask questions, give Jake updates, he checks reflexes and such and we are on our way.  Why then, do I count down the days in anticipation of the next appointment?  I am not quite sure of the answer to this question.

With that being said, this appointment was a tad different than most.  Usually, or at least , the past several appointments, I report that Jake is still having nocturnal tc's.  Most of the time 2-5 a night, 3-5 times per week....blah, blah , blah.  We then always agree to stay our course of treatment and hopefully the beast will decide Jake's brain is no longer taking renters.

This time though, Jake reported his news.  Jake told Dr. H that he has not had a seizure since Thanksgiving Day!  That's 3 months!!!Talk about giving thanks!  Dr. H grinned an awesomely huge grin!  I then, had nothing to tell him...nothing that is except, I had been called in for a teacher conference.  Scared as I was, it was to be told Jake is doing GREAT!  She informed me that since November his skills have really improved.....coincidence?  Jake has also stopped taking his adhd medicine and is doing just fine! coincidence?

As you know, I have been MIA from blogging.  As you also know, I am very superstitious.  I have been extremely concerned and worried about sharing our good news, as I might "break the streak."  So not only have I not told you guys, nor have I told family...even Matt.

Back in November, at our last appointment, I told/asked Dr. hernandez about starting some herbal supplements.  He agreed, but suggested I try Bcomplex first, as it is cheaper.  I tooled around a few days, until I finally was able to get to the store.  I picked up a cheap bottle of B vitamins, gave them to Jake, thinking nothing of it.  It is from that day, or one day after, that we have yet to see any seizures!

As you can imagine, I am on cloud nine!  Just soaring! My cheeks hurt from smiling so much. 

Sooooo, yesterday I sat in my office and was reliving my excitement with coworkers.  About this time, a student came in speaking of some bird outside my classroom window.  Yeah, yeah, bird, shirmerd....we go about our business and continue chatting away.  Then another teacher I share my room with comes in and is grabbing her camera, as not only is there a bird outside our classroom window.....there is a Hawk.  I instantly get chills and am motionless.  I literally couldn't move.

Finally, when I compose myself, I race two doors down,  sure enough, there, staring into our classroom, perched on the nearest branch towards the window, is the most beautiful, calm, baby hawk.



That hawk, supposedly had been there since I left from school to head the appointment the previous day.  After I taught my lesson for the day, i turned to say goodbye to the sweet bird, and he was gone.

Amazing!

click to here to learn why this is so inspiring:
The Hawk


God is good.

"He is a wise man who does not grieve for the things which he has not, but rejoices for those which he has." - Epictetus

Christmas come and gone...

So another Christmas is in the books.  It's very cliche I know, but time is sure flying by.  I am trying to suck up every possible moment with these kids, as I feel like we have lost almost 2 years of our life to the damn beast.  Time spent worrying about damage from seizures, waiting for the next seizure, and wasted in ers, clinics, doctor's offices and ambulances.  Time I would have much rather spent cuddling, playing, swimming, reading, and just watching them.  Honestly, even if if was time spent being annoyed, irritated, and overwhelmed, I would have taken it, if not caused by this monster, we call Doose

I had planned to really get caught up on blogging, as I have had two full weeks off from work.  I envisioned waking up, watching cartoons with the twerps, while sipping coffee in my pj's.  However, none of this happened, including the obvious...no blogging.

luckily...I have NOTHING exciting to report...not ANYTHING at all, if you catch my drift.  If you have read previous blogs you likely know what I am saying here, without saying it!:-)

Since I don't have many words, except reflections of Christmas' past (2009), (2008), I simply added some pictures that tell our bits and pieces of our break to you.



On our way to church





the twerps





the twerps AFTER screaming SANTA at the top of their lungs





brothers enjoying Santa's loot





Santa dropped a puppy down the chimney for Addison- "Mia" Hamm





GUNS!! one of his all time favorites gifts







tools! another hit!





 I am so happy to report a very uneventful Christmas this year.  Three kids, two dogs and a house full of family and friends is soooo uberly uneventful compared to helmets, seizures, diastat, bumps, bruises and blood.  For this we are thankful!  Praying for many more uneventful days.

Christmas is glorious enough, but made even more so as we remember and reflect on Christmas' past.

We are blessed!

Happy new year to you and yours!

“I asked God for strength that I might achieve. I was made weak that I might learn humbly to obey. I asked for health that I might do greater things. I was given infirmity that I might do better things. I asked for riches that I might be happy. I was given poverty that I might be wise. I asked for power that I might have the praise of men. I was given weakness that I might feel the need of God. I asked for all things that I might enjoy life. I was given life that I might enjoy all things. I got nothing that I asked for, but everything I hoped for. Almost despite myself, my unspoken prayers were answered. I am, among all men, most richly blessed.”

Amazing

So I have yet to share anything about Jake's amazing Wish trip.  So here are a few pictures of the little man getting his wish....Surfing like Scooby Doo!  I want to add, both kids and even their old fart parents picked it up quite quickly.  The instructors even said several times..."we dont deserve to be paid, we did nothing for you guys!"  our kids are rock stars!

                                                                          Wishing

                                                                 "we're leaving....on a jet plane....

 

                                                                 now that's first class baby

                                                                Ahhhhh ocean!



Heading out to catch some waves

surfing on the first wave!

 

Rockin' Daytona

Hard day's work...sacked out

If you can imagine it, you can create it. If you dream it, you can become it.

William Arthur Ward

Epilepsy awareness month!

Welcome November! Although, you have already come on in with a whirlwind and are blowing through much quicker than I appreciate, I do love you.  I love the feel of Fall in the air.  The excitement as the school year is underway, the thoughts of Christmas right around the corner.  And the past couple of years, I love the opportunity to make people aware, as November is Epilepsy awareness month!

Never before have I cared or thought about the color purple.  I  even quite hated it.  I cringed as Addison would beg for purple shirts, shoes and clothes.  It had become her favorite color just before the damn beast made an appearance.  Foreshadowing? symbolism? maybe.....

Now I can't find enough purple to throw in my closet.  I even get my nails painted shades of purple.  Today, Veteran's day, I even resorted to literally running down another mom at the boy's school, as she was wearing a ribbon.  I thought the deep blue color was actually purple.  I stalked her throughout the halls and told her Jake's story, thinking she would have one to share as well....until I learned her "purple" ribbon was actually a blue one honoring the veterans.

I have found I love this month, as I have an excuse to tell stories of Epilepsy, share the facts, the horror's, the unknown and the misinterpreted.

I have said it before and will say it again...Jake was "given" this for a reason.  Right now I believe the reason is to educate and inform.  I know his case has already had a huge impact on many.  This is obvious , by the size of team "All 4 Jake" at the stroll.  One of my bestie's , Brandy, has also taken an amazing interest in the cause.  You know that she turned a buiding purple, but also has become a mentor for the Epilepsy foundation in Florida, and now is even organizing a stroll in St. Petersburg.  Starting from scratch, organizing a city wide stroll for epilepsy.....man that's mind blowing.  I don't know if that would have ever happened had we not almost lost our little boy to epilepsy.

Did you know?:

For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence.

Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide.

It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents.



The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal.



In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.
 

Epilepsy in America is as common as breast cancer, and takes as many lives.
 
public and private funding for research lag far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer's and $280 for multiple sclerosis)
 
These are just some of the facts I never knew about the disease "that's easily cured with a simple pill."
 
Today and everyday, we currently deal, not only with the lingering seizures, but almost more annoyingly the learning difficulties , ADHD, loss of motor skills and never ending anxiety caused by  the 100's of seizures a day for months on end that Jake has endured.  I was led to believe once the seizures wee gone or even improved..POOF...life is normal again...far from.
 
Although, I can swear up and down Epilepsy sucks, if Jake was given it to further educate one of you, I will take it.....if we have to.:-)
 
Become aware...It's not what you think.
 
When I hear somebody sigh, "Life is hard," I am always tempted to ask, "Compared to what?"



- Sydney J. Harris

Purple

It's November. One of the most important months of the year. It's Epilepsy Awareness month. All purple, all the time. Everything Epilepsy to anyone and everyone. Spread the word. Talk about it. To your co-worker. your child's teacher. your mom. your neighbor...anyone. JUST Talk about it. Learn about it. Speak up about it.

My BFF, Brandy lives in Tampa. They have a (yes "a")skyscraper downtown called the SunTrust Financial Center. It's a well-known building, for it is continually lit up, but showing it's ability to be ANY color of the rainbow. People ask why it's lit the certain color and then it snowballs from there and the city is soon aware. Well guess what color it is during this great month of November? That's right...it's PURPLE!! PURPLE for EPILEPSY. And it made the news...see the link below. Then ask yourself what are YOU doing to show your support for PURPLE?

Visit this link to see it on Tampa's local news!

looking back...

As I was sitting here reflecting how fortunate we are to receive such an amazing gift from Make a wish and telling mysef how much we don't deserve it, I happened to find some pictures from "back when."

I remember when we started this wishing process, we were told initially that epilepsy doesn't qualify.  Apparently there were others who disagreed.  They thought Jake's type and severity certainly did qualify.  "They", I think was mainly Dr. H. I am not for sure, even to this day, how Jake actually ended up qualifying, but i still remember that call telling us that Jake would be getting a wish. 

The voice on the other end said something about Jake's disability being dramatically life  threatening.  I specifically remember not hearing what was being told to me by Make a Wish, but worrying that I could not get a call in the neuro fast enough.  life threatening?! 

Throughout all this, I think I have had blinders on , as to the severity of Jake's condition.  I think the "mommy mode" took over and I didn't actually grasp what was happening to my son.

Wow, what a road we have traveled.

These are just a few of the physical beatings the beast has given him.  Unfortunately the Damn thing has also done quite a number on the inside as well.  However just like he fought through the physical pain and scars, he is climbing mountains cognitively as well.  For almost 9 months, this little man was basically in a "walking coma."  He barely had intelligible speech, drooled and could barely hold his head up on his own.

Now there is nothing this guy won't try.
He's one brave boy, that Jake.  Certainly my hero!

Wishing...

Almost a year and a half ago Jake was granted a wish by the wonderful people at Make Wish.
Soon Jake's wish will be coming to fruition!

Jake wished to go "surfing like Scooby Doo!" and his wish will be coming true!
Not only will Jake be surfing, but also swimming with dolphins, visting Sea World, and attending a Luau.
We are super excited to get the festivities underway.

Make a Wish has just been amazing to us!

Our experience with make and Wish and Jake's wish givers has not been just about "the wish."

They have allowed us to see a Dallas Cowboys game, build Gingerbread houses, attend Ink parties, get involved in photo opportunities, and most of all gain new friends and some amazing heros and role models for Addison and Jake.

The kids dearly love everyone involved in Jake's wishing experience, but his wish givers truly hold a special place in their hearts.

Kristin and Christine have just been amazing to us.

They have certainly gone up and way beyond anything and everything we could have imagined when first starting this wishing journey. From Christmas cookie parties , visiting to welcome Cooper, bithday ice cream parties, over flowing presents to the most loving hugs and kisses,

these ladies hold a very special place in our hearts. They are surely two amazing ambassadors for such an awesome foundation.

(Jake in the "wishing room" making his wish)

Remember today, for it is the beginning of always. Today marks the start of a brave new future filled with all your dreams can hold. Think truly to the future and make those dreams come true.”

moments like these

Moments like these want me to cry my eyes out, scoop up my babies and squeeze them so hard it hurts.  Moments like these make me thank the Lord for what I have. 
Moments like these make me want to kick the ever living heck out of the freakin' beast!

last night as I nonchalantly, or even more so, annoyingly told Jake to go to bed and assured him I'd check on him in a minute, knowing one minute actually meant 10 or maybe even 20.

Matt and Addison were at soccer, Coop was already fast asleep.

I was "busy" doing something mundane,  probably washing bottles and getting ready for the same revolving door , that is our day.

When I finally got the chance, I turned on the hall light, so I could peer into Jake and Coop's room,without waking either of them, lay with Jake a minute, get back to my "business", all without disturbing their slumber.

As I peer in, Jake is sitting in his bed.
 His head is bowed.
His hands pointed at his chin.

I asked "What are you doing Buddy?"
He responded, "just asking God to take my seizures away."

My heart instantly broke into a million pieces.  Our little man was begging to make his life normal.  Jake has never really said he knows when he has seizures, but last night proved to me....he knows....he knows how his life has been changed.

As I sit down to type this entry and maybe even brag about how kind the beast has been to us lately by not showing his ugly face for a while, I hear it.

 I hear that God awful gasp and then the bed rocking and convulsing over the monitor.

This however, is not the "usual" 5-10 second seizure.
This one is a good 30 second doozy.
This one  makes me scatter and find a magnet and even the Diastat, that we have not had to use in so very  long.
This is one, in which his postitical is a good 1-2 minutes. 

This is one I have not seen in a long time.

Damn you beast! Just when I think you may be tired of picking on my kid, as he is fighting and doing his damnedest to kick your ass, you come and show your ugly self once again.

Damn you!

"It is at moments like these that I know my what my purpose is in life. I am here to love you, to hold you in my arms, to protect you. I am here to learn from you and to receive your love in return.I am here because there is no other place to be."
~Nicholas Sparks

9-11

Every year on Jake's anniversary of being taken off in an ambulance(twice), we take cookies and muffins to the fire station.  I say every year, but I guess this is only the 2nd year.:-)

This year we didn't actually make it on his anniversary.  We had great intentions, but never actually made.  So we decided what better time to acknowledge these heroes than on the anniversary of September 11th.

I hesitate calling our community helpers heroes, as this is their job.  This is what they signed up to do.  They signed up to beat down fiery walls in the middle of the night and to cut cars open to save a civilian inside.  They signed up dive into frigid waters to rescue a drowning child.  This is what their job is.

This is what their job is.... but they are truly heroes in my eyes. 

These community helpers giving an iv of rescue meds to a seizing boy in Plano.

These men and women stopping a heart attack  victim from becoming a fatality in San Angelo.

These heroes climbing stairs  and doing all they can to save the lives of thousands in New York while risking their own, every step of the way thinking of the loved ones the could be leaving all alone at home.

Regardless of where they are and what they have done, It is certain they have changed a life in their path.  For this they are heroes to me.

Here are some pictures of this years visit to Plano Fire Station #4 on September 11th, 2010.

He is a fireman.

He puts it all on the line when the bell rings.
A fireman is at once the most fortunate and the least fortunate of men.
He is a man who saves lives because he has seen too much death.
He is a gentle man because he has seen the awesome power of violence out of control.
He is responsive to a child's laughter because his arms have held too many small bodies that will never laugh again.
He is a man who appreciates the simple pleasures of life - hot coffee held in numb, unbending fingers - a warm bed for bone and muscle compelled beyond feeling - the camaraderie of brave men - the divine peace and selfless service of a job well done in the name of all men.
He doesn't wear buttons or wave flags or shout obscenities.
When he marches, it is to honor a fallen comrade.
He doesn't preach the brotherhood of man.

He lives it.