All 4 Jake

Doose Syndrome Epilepsy Alliance

2011-12-14T12:24:00.001-06:00

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

2011-12-13T14:16:00.002-06:00

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!

2011-10-19T20:55:00.001-05:00

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!

2011-04-18T22:29:00.001-05:00

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

2011-03-25T22:29:00.000-05:00

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

2011-03-24T23:21:00.000-05:00

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

2011-02-17T13:29:00.001-06:00

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...

2011-01-04T20:32:00.001-06:00

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

2010-12-21T02:46:00.001-06:00

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!

2010-11-11T21:19:00.000-06:00

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

2010-11-04T20:19:00.007-05:00

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...

2010-10-09T23:32:00.001-05:00

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...

2010-10-09T22:39:00.003-05:00

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

2010-10-07T20:23:00.000-05:00

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

2010-09-12T20:58:00.000-05:00

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.

M.I.S.S

2010-09-09T14:42:00.001-05:00

For about a year now some of my bff's and I have been discussing doing a bible study together. Since we don't live near each other this has proven to be quite difficult. We have tried to get it going on email, but "life" happens and the hectic days of being a moms took over, so unfortunately it never really came to fruition.

However, my friend Leslie, has now set up an awesome blog.

The blog is a place for us to not only vent and discuss what we have read and what the reading means to us, but to also, and most importantly, a place to learn how to come closer to the Lord during these fast moving times.

I am particularly excited, as trying to cope with a special needs child, realizing what that means to our family, and adjusting to this situation has proven to be quite difficult.

It has certainly opened our eyes to the fact that life is certainly nothing we should take for granted and that we should always live each moment to its fullest.

However, sometimes, to balance living this way and "everyday life", that is....school, work, soccer, husband traveling, normal parental duties and especially those that go along with caring for Jake, has proven to be quite difficult.

If you are a mom, wife, sister, or friend come learn with us how to juggle all that goes along with being the best of each.

This is your invitation to come on over and learn with us!

Leslie has set up a reading schedule that is not at all rigorous.

Stop by and join us...we would love to have you!

M.I.S.S.- Moms searching for inspiration, spirituality and support

"As Jesus and his disciples were on their way
he came to their village where a woman name Martha opened her home to him
She had a sister called Mary
who sat at his feet listening to what he said" Luke 10:38

Week of firsts

2010-09-01T20:29:00.054-05:00

Twas the night before school...

So many "Firsts" have happened the past couple weeks. It has been very exciting, anxious and tiring around the Peter's household.

Let's start with the most obvious first....The first day of school!!

Addison started her first day of 1st grade!

Jake started his first day of Kindergarten! and..

Sweet Coop started his first day of school too!

(There are a couple other firsts I will post in a couple days)

The anxiety building up to these HUGE milestones has been tremendous!
Last year as Addison entered the big world of public school as a kindergartner was admittedly tough. However, this year as a 1st grader the fear, anxiety and overwhelming feeling of time passing too quickly hit me like a load of bricks. What a huge difference a year makes.

My little princess went from not being able to read a year ago, to now digesting chapter books, such as Ramona and Beezus, on a regular basis, to winning soccer championships that qualify her to play at Disney World, to being the sassiest of teens, who will argue, with logic ,at the littlest of things.

This first grade transition has been sooo much harder than kinder.

On top of this huge leap, we obviously have Mr. Jake making a big leap into the real world as a kindergartner as well.

Jake has been in special ed receiving occupational therapy services in the school and some speech and ot services outside of school, because of the trauma incurred by the damn beast! So we were/are very concerned about this move into school. It is because of this he worked his booty off at a good friend and great teacher's house this summer. he worked with Ms. Kim 2 days a week on kinder readiness to help prepare for his big journey. She was amazing and he learned so much from her! He was very sad to learn on the first day of school that ms. Kim was not going to be his teacher all year long.

On top of this confusion, a couple evenings before we had visited Jake's old school, which is Addison's current school. She had supply school night and the much anticipated class rosters were posted.

As we were at their school we had to swing by Jake's old classroom.

Much to our surprise, not only was his beloved teacher there , but also her two helpers.

All three whom Jake is dearly in love with. Ms. Keavagh he even calls his bride!

So you can only imagine how confusing seeing all these great friends a few days prior and then going to school and not recognizing any familiar faces was for him.

We helped ease him into this "strange place" by assuring him that Cooper would only be a couple classrooms away and he had to take care of him.

The irony of "strange" is that his "new" school isn't really so new. This is where Addison and Jake went to daycare. The same school Jake was attending when he had his first seizure. he didn't have it at school...that we know of...but walking through those halls for the first time was creepy none the less.

The teachers and staff there are ever so loving! They all ran and gave Jake huge hugs and kisses upon his arrival. They asked a million times where and how Addi is doing. Genuinely kind, caring, people of the Lord.

Honestly, the day was probably a million times harder on us than the little ones, but it still did not help me from being an emotional wreck. I counted the minutes until that 3:30 bell rang and I could run to get my twerps!

The day was made as I picked up each kiddo and they all had the BIGGEST smiles on their faces!

Jake jabber jawed nonstop about his amazing adventures and good friends, Addison strutted her stuff as only a BIG 1st grader could do, and sweet Mini Coop cooed and giggled the whole way home.

Be still me heart is all I could think that first night...be still my heart

God didn't promise days without pain, laughter without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way.”

Embarressed

2010-08-09T21:42:00.000-05:00

I am so embarrassed that it is so long between posts. I keep telling myself I will get better and then I go to look at the date of the last post and it is weeks not days!

Therefore, I will post this evening, however, it will be short and boring.:-)

We went to the neurologist today. I so look forward to these trips. I am not sure why, but I literally count the days between appointments. The visits usually take all of 15 minutes, which are far less than the hour car ride there and back.

Today was a good day.

Last night we put Jake to bed and within 20 minutes he was already seizing. That sucks! Even spookier, is when you watch him on the "night cam" on the video monitor, the seizures are much more disturbing than in person. His eyes are wide open and glow like some demon child. Then there is the delay. Uggh it weirds me out even to recall the way it looks.

However, even having seizures last night so soon upon falling asleep. Jake has been doing much better.

Dr. H noted it, as have a few friends that don't see Jake all the time. The have stated that his gait is much more steady and his speech is much improved. I don't always notice these " little things" as he is my shadow throughout the day.

Dr. H said that this improvement is most certainly because the seizures are diminishing in number and in length! YEAH!!

So although seizures suck, I am so very happy to be seeing fewer and fewer of them.

Lately the biggest "Jake dilemma" is his excessive talking and question asking!! The child never quits!! We ask him "Jake do you ever stop talking?" and his response is "yeah, not so much?"

Although, the nonstop verbage is QUIT annoying, I remind myself of the many months when he was barely verbal. And when he did talk you could barley make out what he was speaking, as his words were so jumbled with nonsense, drooling and slur.

So, as the non stop drilling of questions continues I try to remember these times and be thankful for the thousands of :
"Mom, why, how, what's....?"

For this annoyance I am so very thankful!

Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful.”

I've come to realize...

2010-07-20T16:13:00.000-05:00

that seizures suck. They have completely consumed my life, even when I don't really realize it.

As I was listening and watching Jake on the video monitor today, as he took a nap, it hit me. This crap is NOT normal.

He seizes, I watch.

Jake seizes at least once a night and at least once during the day. Yea! that's good news, right?

Well, in whose mind? I have totally and completely come to think that this is 100% normal of a 5 year old kid. I think I have even convinced myself that most , if not all kids, suffer from seizures.

I used to run to Jake's room when I heard that dreaded gasp of air, as if it's his last breath, and then the sound of the bed vibrating , as his little body convulsed uncontrollably. Now, I simply watch the monitor and count to see how long the damn thing lasts. Sometimes, though, I just listen and count until the noises, snorting, heavy breathing and smacking end.

I have come to realize that this is NOT normal! and for today, I am going to sulk and say it's not fair.

Seizures suck!

I hate the way I can remember every sound, facial gesture, and movement of that dreaded day , August 1st, when I saw Jake's first "big" seizure.

I hate:

The sight of his lips turning blue and me trying to breath life back into them.

The words the 911 operator was telling me to try and help my baby boy.

The fact that I had one phone to my ear with the 911 operator and one phone on the other ear trying to explain to Matt what was going on , as he was hundreds of miles away.

The sounds of whirling ambulance, fire truck and police car sirens and realizing they were coming to our house. (Addison still can not stand the sight of emergency response vechilcles or sirens, even though she was not awake, she connects them to that dreadful day)

I can still so vividly remember all the fire and policemen storming in our house, not worried about breaking or dirtying something with their big and massive gear.

The way they rushed to Jake's side as he still seized, gave him oxygen and poked him trying to get a line started.

To this day I have always said that that first seizure was 12 minutes, however I have come to realize, it was at 12 minutes when the Emergency response team actually showed up. Jake seized all the way to the hospital.

After the team entered the house, the policewoman told me to grab my purse, I am at a loss as to what actually transpired next. I do remember me asking the emt's, as I exited the vehicle and Jake's seizing finally stopped, and as they pulled his gurney out, if the sirens were on?

why in the hell would I ask that? and that is basically the response i got from the young men saving my son. they looked at me as if I was off my rocker, which I probably was. they then assured me they were on, as were the sirens police cars that followed.

From that moment on, I don't remember much. I don't remember much of the past 2 years for that matter. I think we have all been in survival mode. I have "loosened" up a bit, as Jake has improved soo much, and for this I praise the Lord.

But, I have come to realize that this is not normal.

the way I stare at baby Cooper and can't relax as his eyes roll back into his head as he enters baby slumber, the way all babies do, is not normal.

the way my heart skips a couple beats every time his arms twitch from baby reflexes, is not normal.

the way i hold my breath , as he stretches his precious baby arms to stiffness and I wait for them to relax, is not normal.

Today, I have come to realize, that this feeling of cinder blocks sitting on my chest day after day is such a burden. I am ready to lose this fear and anxiety and finally Kick this Beasts ass, because it is not normal.

I have never strived to be "just normal," but these days this is exactly what I pray for...to be normal.

It has been just about 2 years since the day I noted his first seizure, a twitch that sent a smoothie flying through the air of Costco.. I certainly did not think we would still be battling this beast 24 months later.

Epilepsy is an easy cure, give the kid a pill and everything will be fine.

I have come to realize that nothing is as easy as it seems.

Once you choose hope, anything's possible. ~Christopher Reeve

breaking child labor laws?

2010-06-29T21:24:00.000-05:00

With three children, or even without three children for that matter, I could always use help with the housework.

The kids helped me quite a bit today. :-)

The good thing is they think working like this is a HUGE treat, or "reward" if you will. Being able to spray cleaning products, does not seem like cleaning to a 5 and 6 year old. It s waaay different than me asking them to clean their room or put their clothes away.

I have a lot on my mind, especially with the upcoming Fourth of July weekend. A lot of feelings and thoughts that I can't quite get together yet. Mostly about the anxiety and the different aspects of Epilepsy that no one really realizes. No one, including people that have been battling this beast with us. the things that seem so small , or not even part of epilepsy, but in reality , would not even be relevant in our lives, if the beast would not have ever entered it.

So with that being said, I promise to update, hopefully every day this week. I have been avoiding the blog, as I have not known how to deal with what I am actually feeling inside. Well, that, and the fact that I have still been dealing with a 102 fever. mommies are NOT supposed to be sick...there is simply no time for a mommy to be sick. She has too much to do!

Here is a pick of Sweet "Mini Coop" at 3 weeks old. He now stays awake for a couple hours in the morning and a couple hours in the late afternoon. this is huge, as we honestly thought something was wrong with the kid, as he slept soooo much! it's been 5 years since we were parents to a newborn, we are relearning everything....well, at least I am.

Drag your thoughts away from your troubles... by the ears, by the heels, or any other way you can manage it. ~Mark Twain

summer blues

2010-06-21T18:25:00.001-05:00

I used to love summer.

the sun, lounging in the pool, long days, and pretty flowers.

lately, though, summer is just a big ball of stress.

A couple of Jake's major seizure triggers are heat and lack of sleep.

so in trying to prevent seizures, We try very hard for him to get enough rest and stay cool.

It kind of seems unfair to me, as summer vacation is a kids dream. Jake and Addison would like nothing more than to swim all day long, come in to eat dinner and then swim some more.

As much as I, a sun worshipper, would love to adhere to this schedule, it has proven to be awful for Jake. While we try to set limits for Jake, Addison is also effected.

Looking for things to keep them busy on these long summer days in the Texas heat, has proven to be quite a challenge.

Jake has been slowly recovering and regaining seizure freedom from the mistake of missed meds two weeks ago.

However, yesterday we tested the limits for Father's Day.

The kids swam all morning with my dad. They came in for lunch and a short nap and then hit the pool again with Matt for several more hours.

We put Jake to bed fairly early, as we recognized the business of his day. However, within 30 minutes of him falling into a slumber he had 2 tc's.

Uggghhh, it is so difficult to balance what the kids needs and wants are.

On top of brainstorming ways to keep the twerps busy, I have found myself dealing with a 101-102 fever the past couple days. I am sure this doesn't make their days any more fun, as all I have wanted to do is feed the baby and then rest on the couch.

I have happened to find an awesome snow cone shack that certainly helps to cool us off on these hot days, and even found shrinky dinks to help occupy their time in an air conditioned atmosphere.

But lets face it, as fun as these new adventures may be, they only last a short time and are certainly not as fun as wasting away the long days of summer outside.

Fathers day

(Jake is barking like a seal)

The kids present to Matt...it was framed in a horizontal, 3 window, black frame.

and finally, this is how the kiddos wrapped up the day. Addison rocking and reading to her little brother.

Then followed that beautiful season... Summer....

Filled was the air with a dreamy and magical light; and the landscape
Lay as if new created in all the freshness of childhood.
-- Henry Wadsworth Longfellow

He's here!

2010-06-09T21:30:00.002-05:00

As of 5:12 pm, Tuesday, 6/8/2010, there is a brand new addition to the Peters' family. And he coudln't be cuter. We are so blessed by our lil' guy. Addison and Jake are just smitten and can not wait for us to join them at the house!

Of course, nothing can be "easy" for us, so the day was quite interesting.

It started at about 4:00am with Jake having a 20 second nocturnal tc. I was appalled, as this was longer seizure than I have recently come accustomed to. Jake also lost control of his bladder. He has not done that in numerous months. Obviously, I was quite baffled and disturbed and threw any more sleep out the door.

That seizure was followed by another one about 30 minutes later...and then another one soon there after.

After about 6 seizures and loss of bladder control 2 more times, between 4 and 6:00am., we finally just woke him up.

This, as expected, put an end to those nasty things.

In between seizures , I, of course, started brainstorming, "what had changed", to make this particular night a "break through" night. I 't didn't take long for me to realize, that in all the excitement of getting ready for the early departure to the hospital, we had forgotten to give Jake his night time meds.

So around 4:45, I quickly made thee decision to pull the trigger and give him one of the missed drugs and then wait a couple hours to give him his "regular" dose of the rest of the medications.

Although it was terrible to see such early morning happenings and they couldn't have happened on a worse day, iIwas glad that there was a reason for the madness.

Matt and I departed for the hospital at about 7:00, after we got Jake settled with his Granny.

Upon arriving at the hospital, we were "checked in" and Dr. Garner broke my water at about 8:00 and started Pitocin around 8:10. He took wagers on how quickly this lil guy would make his entrance.

His, the dr.s', the specialist, and the experienced professional, was by 12:00.

We toke his word for it and were releived that by 12:30 we would surely have another sweet addition.

Well, 12 came and went, as did, 1:00, 2:00, 3:00 and 4:00.

It turns this third child of ours was quite stubborn.

Although I was progressing, his head was turned at such an angle that he wouldn't move down the birth canal.

After many position changes and acrobatics on my part, at around 5:10 it was go time.

Can you tell I am excited?

Everyone was shoved out of the room and by 5:12 our lil man was here!

Cooper Austin Peters

7lbs 1 oz

19.25 inches

blessed our lives at 5:12 on Tuesday, June 8, 2010.

All it took was one easy push!

He is just a doll and we are so very blessed.

The kids awaiting that first peek

I can not wait to share pictures with you all, however, because my computer is still in the "shop" the and computer I am currently working from is very much a downgrade, I can not access pictures and upload them .

Once I am able to though, this page will be exploding with photos of our little miracle!

As for Big brother Jake, he is caught up on his regular medications and is doing much better. He did have a couple seizures last night, however they were far less intense and much shorter than those of the night before. Hopefully tonight will bring no seizures at all.

“Birth is the sudden opening of a window, through which you look out upon a stupendous prospect. For what has happened? A miracle. You have exchanged nothing for the possibility of everything.”

Time flies...

2010-06-01T17:16:00.000-05:00

Where has the time gone since the last post?

We have been wrapping up the end of the school year, celebrating birthdays and anniversaries, splashing in the pool, playing on the sun, celebrating small victories and stumbling amongst minor set backs.

My computer has been on the fritz, so this very much makes working and blogging very difficult.

To sum up the past week, without pictures, as everything is on my computer currently getting "fixed" through my school district, it has been a wild one.

I celebrated my 29th :-) birthday, Matt and I celebrated our 10th anniversary, and we rejoiced in Jake being 2 weeks seizure free.

However, last Thursday, I got "the call."

Jake had a big tc at nap, at school.

My heart sank. I had been praying soo hard that this "good streak" would continue. I literally felt like I had been kicked in the gut.

Then, several minutes later, I got another call....Jake had a 102 fever.

I smiled soooo big!! I was so happy!

Why, you ask? because a high fever could mean that the seizure was a febrile seizure and not the works of the damn beast!

After, skipping gymnastics and running Jake ot the pediatrician, we learned Jake has a sinus infection.
I asked for different antibiotics than he was on a couple weeks ago, as I am certain it was causing seizures and we went on our way.

The fever cleared up and we have been seizure free since then, until today. He had a small one at nap. This time, however, no fever...so this is probably the works of the beast.

Also, as we swam, attended the Colonial golf tournament, and simply just observed Jake , we have noticed a trembling in his hands.

This is very frightening, as this is what I so vividly remember his hands doing all the while he was having drops, and jerks. I fear that they could be coming back!

I refuse to get too worked up, until he finishes his course of antibiotics. Hopefully when he finishes the meds, the twitching will too vanish.

Hopefully, after this week is over, the school year ends, and I get my computer back, I will be able to share some great pictures and even better news!

Fear ends where faith begins.

little update

2010-05-24T08:32:00.002-05:00

Just a little update, as I have been MIA lately. We have been busy, with Addison's soccer, getting ready for baby, play dates and additional bouts with pink eye.

We went to the dr., ob/gyn. last Wed. While everything looked great, Lil' Bit, is just that....little.
Therefore the dr. wants to take some precautions and get sonograms from here on out. He is not overly "excited" about this, but also wants to take precautions.

In questioning his motives and sonograms. he said that if the baby is still measuring small, we will look at bed "evicting" Needless to say, we are very anxious to see how Wednesday goes.

Last Monday, Jake came to me as I was blow drying my hair. he stood before me, looked at me dumbfounded and asked "What'd you do to me eye?"

I looked down at him and sure enough, his little eye was locked shut from excess eye "goop." Luckily we had just about 2 drops left of his eye drops and started that immediately, until we could get another script called in. Although, it was an inconvenience, mostly for my mom, as she was once again, "the chosen" one to haul him around and watch him while I worked, I am glad it was just pink eye.

Do I dare even say it.....I will probably get shot by a handful of people for boasting, but here goes....

Jake has been seizure free for 11 days now!!! (knocking on wood, fingers crossed, and whispering this news)

I don't recall a time period of 11 days seizure freedom since this damn beast has come to visit.
While we are so very grateful, we are definitely "clenching!"
This beast is a bully and very sly...you never know what his plan may be.

Please pray for Aiden, as he is still in the hospital. He was able to leave ICU last week, but things have once again made a turn for the worse, so it looks like he may have to be taken back down to ICU very soon, as he is in NCS, nonconvulsive status. (more about NCS)

Aiden's caring bridge

No matter how steep the mountain - the Lord is going to climb

it with you.

- Helen Steiner Rice

ASI Birthday party

2010-05-17T13:34:00.002-05:00

Better late than never

Jake had his first "real " birthday party this year, courtesy of ASI gymnastics. And what fun we had!

Matt told me at least 3 times throughout the party how cool it was and how great the staff hosting the kiddos was.

I think it is safe to say all the guests had a great time.

If you are ever wondering where to have a party , I tell you ASI is the place!

They also host parents night out on Friday's. We are looking into sending the twerps to those as well.

The staff is fully aware, informed and comfortable with seizure disorders, the whole place is padded, and the kids have the best time!

Addison has already declared this is where she wants her brthday party to be next Decemeber.

Not only did the staff completely enteratin the party while providing a safe enviroment, I did not have to lift a finger! They thought of everything! I literally just showed up with the kids and the rest was already done.

Enough from me though, I think the pictures of the true glee and excitement on all the kids faces speaks more than any words.

Silly Boy!

Soaring!

Soooo very proud of his "Birthday medal!" he still carries this piece of jewelry with him everywhere!

Look how engaged and focused they kept the kids! I don't know if I could ever have done that!

ASI Gymnastics

We can not and could never Thank ASI and David Holley enough for giving Jake the most AMAZING birthday party!

“At times our own light goes out and is rekindled by a spark from another person.Each of us has cause to think with deep gratitude of those who have lighted the flame within us.”

~Albert Schweitzer

Mother's Day

2010-05-09T08:47:00.007-05:00

I have read this poem before by Erma Bombeck, but it has been awhile. Recently ,another mom of a special needs child just reposted it and I thought what a better time to share it with you. On this wonderful Mother's Day.

Like the orginal poster, I too feel that Erma is wrong on one aspect of the selection. Mom's of special needs children are not Saints, at least this mommy isn't. Being a mom is what I signed up for and I am certain each and everyone of you out there would also rise to challenge, if indeed a special challenge was given to you.

You see, when we decided to have children, we chose to make them our priorities. That is our job as parents. To make our kids, Addison, Jake and lil' bit, feel safe, to be there for them in times of need, and most importantly to push aside our own selfishness to care for the little ones that can't care for themselves.

This beast that we were given, has opened our eyes to empathy, Faith, priorities, and the things that should matter most.

Although, I wish we didn't have to see our little guy suffer, I wouldn't change the past 18 months for anything.

We are blessed. we have been through the trenches and the only way out is to look for the light and fight like hell back out of this hole.

To see our twerps fight their way through lifes challenges is what makes this mommy so very proud.

The Special Mom by Erma Bombeck, 1980

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter, patron saint, Cecilia. Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world, and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma'* for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see . . . ignorance, cruelty, prejudice . . . and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised midair. God smiles. "A mirror will suffice."

Thank you to our dear Mothers, Babi and Granny, on this special day, as they have given Matt and I the ability to see the rainbows after every storm. Without them and their lessons, patience, and understanding this roller coaster ride would cetainly be much more bumpy.

When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child. ~Sophia Loren, Women and Beauty

Marathon

2010-05-08T20:19:00.002-05:00

We have had a very busy week.

I had planned on taking off on Wed so Jake and I could do a doctor appointment marathon. It would all start with the always anticipatated ob appointment. Then we would drive to Ft. Worth for Jake's neurologist appointment. Finally, head back home for a peditrician appointment that afternoon.

Things took a turn Tuesday when I received a call from Addison's school, informing me she had thrown up from her excessive coughing. Since the previous Friday, when her seasonal allergies started to kick in, she had been coughing and coughing. Her cough is aggravated by running, walking or even sleeping. She had been up all night every night since Saturday coughing up a lung, until she would finally gag herself. We tried everything, to no avail.

So, luckily my mom was able to pick Addi up Tues. and give her some TLC before she brought her back up to my school, where my dept was throwing me a baby showewr. We had a great time and were showered with much love and gifts for our likttle man.

I took Addison to school Wed. morning, and about a hour later I got another call from the school nurse, informing me they thought she had pink eye. So our plans change a bit once again. Instead of hauling just Jake to the appts. I now would haul both kiddos and add an appointment for Addison.

1st appointment- My appt. was great , uneventful, but great. Baby is head down and low. I go back in 2 weeks for the dilation check and a sonogram. I am counting the minutes until that one, as these braxton hicks are really picking up. Soo exciting!

2nd appointment- GREATNESS!!!!! Jake's appointmet took me over the top with joy. His blood levels came back fine , in regards to liver functioning. BUT, his blood levels were way low. Meaning he is/was not even anywhere near therapuetic level with his meds. To me this is great news. If he has such good seizure control, depending on how you look at it...compared to where we have been, or simply seizures, on such low med levels, then hopefully a little tweak will really help him! We decided to up Jake's Felbatol, and leave everythig else the same. It is my hope, that if this works a bit we can wean his benzo, Clobazam. Dr. H also informed that Clobazam was not as addictive of a Benzo as many out there. This, too, was great news.

I left that appointment on cloud 9! well until I found the screw in my rear tire...

3rd and 4th appointment- Jake's well baby appt. went well. The only hitch was he did not do so well on his eye exam. The ped recommended we go see a specialist to make sure his eye sight is ok.

She also , thought that Jake could have a possible sinus infection, but we were going to wait it out, as he is already on so many meds.

It was also confirmed that Addison has a sinus infection and pink eye.

Thursday Addi stayed home with my mom and dad to nurse herself back to health.

Friday, FINALLY. I take both twerps to school and ...here we go again....within 1 hour of my work day, I get a call that Jake know has suspected pink eye. Again my mom saves the day and is able to pick hm up, until I can leave work. Thank goodness I work with some awesome people and they were able to make this happen for me!

By the time I picked up Jake his poor, little eye was swollen shut. Luckily, when I called the dr., he was able to simply call in some scripts for Jake, so we didn't have to go sit in a crowded waiting room again and pay some more copays.

Although, our counter currenty looks like a drug store, both twerps are feeling and looking much better!

A bee is never as busy as it seems; it's just that it can't buzz any slower.

Kin Hubbard

Creepin'

2010-05-02T09:33:00.000-05:00

Unfortunately the past couple weeks, the nocturnal tc's have been creepin' up in numbers and intensity.

Jake has a neurologist appointment on Wednesday, so hopefully we can figure things out then.

We were asked to have Jake's blood levels checked last week. So that is what he did first thing, bright and early on his birthday. Luckily, the kid lOVES getting his blood drawn, so that was an excellent birthday present to him.

I am anxiously awaiting the news on those results, as I always take for granted everything will be just fine. The blood levels check his current medicine levels and also make sure there isn't any damage being done to his liver. The liver is what metabolizes all these drugs he is on, so it, the liver, can take a beating.

I think the plan may be to increase some meds, if indeed his med levels come back ok.

I am not quite sure how I feel about increasing meds that he has worked so hard to get rid of.

But, I certainly don't want to see all these seizures back. The past couple days we have had 3-5 a moring and 3 during naps. Usually, I would kind of shrug these off , but they are also coming back with increasing intensity.

However, I also don't want to see his cognition and "zip" be lost again as well as a result of more meds being on board.

Hopefully, Dr. H will have some fabulous, miraculous plan that will "CURE" everything!:-) It doesn't hurt to be optimistic!:-)

My worst fear is that seizures beget seizures. If these seizures are creepin' back with a vengence, are we going to see the dreadful drops again?!

Hopefully, these can all be chalked up to a simple growing spurt and a slight adjustment of meds will put us back on track!

On a side note:

Please pray for Aidan and his family. He is a fellow Doose patient going through a very difficult time right now.

Read about Aidan here

"If God gives it to you, he will lead you through it."

You've come a long way baby!

2010-04-29T12:05:00.001-05:00

Happy Birthday sweet boy!
My, how far you have come! You never cease to amaze me little man. Keep moving those mountains and let nothing stand in your way!

Jake's 1st birthday

Jake's 2nd birthday

Jake's 3rd Birthday

Jake's 4th Birthday

(swollen and fresh from the hospital)

Jake's 5th Birthday

Because time itself is like a spiral, something special happens on your birthday each year: The same energy that God invested in you at birth is present once again. ~Menachem Mendel Schneerson

again?

2010-04-26T16:06:00.003-05:00

Ugghhh Again with the numerous tc's?

Last night/ early morning Jake logged 6 nocturnal tc's again. He had been doing so great!

I seriously wonder, if he gets so worn out over the weekend that his little body just can't handle it and the seizures are the only way it knows to cope?

Who knows, but looking back, he was on a pretty good run last week as well, until Tuesday. He had about 6 tc's on Tuesday and then improved again, with little to none, until last night.

Ugghh it gets so frustrating. Just as I think things are getting better, or I am starting to make connections between activities and diets and seizures, something like last night happens.

I am ready for this whole mess to leave our lives just as quickly as it entered.

It's the little things I miss. The things we have once so taken for granted:

signing him up for sports

keeping him up late, past 7:00, to watch movies, work on puzzles, or simply enjoy the great Texas weather

rewarding him with sugary treats

date nights (not many feel comfortable enough to stay with him. It has been over 18 month since we have gone out just the two of us! I take that back, in October The kids stayed with my parents over night, as Matt and I attended the Roundup for Autism...hmmm how many months ago was that? How far along am I?:-))

leaving the house without a suitcase full of medicine and "emergency medicine"

If the beast was to leave today, I would not miss:

THE ANXIETY

The phrase "we can't because of Jake" or always telling Addison later b/c Jake can't, or Jake can't have that and it completely affecting Addison as well.

sharing our bed

the daily medicine administration

the total and complete over anyalzation of EVERY little thing he does.

The feeling of embarassment or the need to apologize for his EXTREME ADHD and behavior brought on by seizures

wanting to back out of every playdate, as I dont know how he will act

and mostly..... having to explain to people why I have no desire to be social and "hang out," as being a working, mostly single, as Matt travels so much,
pregnant mother, of a child with special needs, gets quite exhausting!

(I will not miss the high school drama and gossiping behind my back that goes with the above either)

The lists could go on and on....

For right now though, we are good. I just simply can't wait for it to be GREAT!

Jake, and Addi, have come so far in this journey and I am certain it has made them much stronger people. I am amazed with them daily. They have so much compassion, empathy and understanding. Those traits can never be taught! and I am certain they would not possess them, had the beast not come for a visit. They are certainly my little hero's. I continue to learn from each and every day.

"We must accept finite disappointment, but we must never lose infinite hope."

Martin Luther King

Texas Bluebonnets

2010-04-21T14:06:00.009-05:00

The kids and I had some fun romping in the Bluebonnets yesterday. I am practicing with manual settings on the camera, so any opportunity is a photo opportunity in my eyes! Luckily, the kids humor me and play along with my little adventures.

The twerps had a blast smelling the flowers, and running through "Texas!" They both just rcently had lessons at school discussing all things Texas. So this was actually a perfect lesson wrap up! Addison was sure to tell us MANY times that the police would come arrest us, if we picked one of the state flowers.

(these pictures look MUCH more grainy, than they did before the "blog upload." I wonder what I am doing wrong?)

Pooper Scooper!

2010-04-20T10:28:00.002-05:00

Pooper scooper= me cussing

Jake had been having a great seizure free run! I think it had been about 3-4 days without any seizures. That is our longest stint in a while.

However, last night/early morning, this was shattered. For what ever reason from between 3 am and 6 am he had 6 tc's. They were little and under 10 seconds long, but still, that seems like a pretty big cluster. So I finally just woke him up, so this dreadful sequence would halt.

I feel like "something" must have changed last night to make the beast come out and play. Was it something he ate? that he drank? was he too tired? growing spurt? Did I give his meds at a different time?

Who knows.... it gets exhausting analyzing and over analyzing every little things that child does.

I feel like I am living in constant "clench mode."

Hopefully the days to come will be much better!

The greater the obstacle,

the more glory in overcoming it.
~ Moliere ~

Hair today, gone tomorrow

2010-04-19T11:20:00.002-05:00

This is how our sweet turd,otherwise known as Jake, approached me about a week ago.

Yes, with a large wad of his sweet, baby boy, blonde locks in his hands. I almost fell to the floor in a panic! Where was the "spot" that all this hair came from. Luckily, because he has so much hair, a bald spot was barely visible!
Phew, because that hair makes me smile and I don't ever want him to lose it.

Although, I love his long hair, especially when it curls in the humidity, one must get a trim every now and then. Jake was certainly due for a cut this apast week. The Texas heat and that mop of hair scres the begeezies out of me, in regards to seizures. I also, figured, it may be a good idea for him to actually be able to see what he is trying to read in school, and where he is trying to travel to down the hall.

So after gymnastics Thursday, I took him to a new hair salon, as his normal kids place was closed.

Jake is stoked about getting his hair cut. I am a tad nervous, as I don't trust many with my baby's hair. My "sign" should have been when Jake looked up at the hair dresser, now armed with shiny new blades, and said "how'd you lose that tooth?"

She proceeded to cut and it appeared to me she was acknowledging my request to "keep it long" " just trim it up."

It took about 3 steps out of the door, before the waterworks started. These weren't "pregnant, drama queen" tears, these were "MY BOY HAS A MULLET" tears. As Matt said, "he looks like he should be driving a 76' Camero....those words did not really help the situation.

Luckily, I was able to get an appointment with Jake's regular hair stylist bright and early Saturday morning. Good thing, because I was sure glad to quit walking him around with a bag over his head.

His stylist, literally did not even recognize him. She tried to give "that boy" away to another hair dresser.

She did do a great job of cleaning up the diaster, that was Thursday's hair massacre, but now all his white blonde has disappeared, as did his lovely locks of curls.

He certainly looks handsome (pic coming this evening) and is very proud of his new ability to lift his hair into a faux hawk, but I am still completely heart broken.

Is it wrong that I seriously considered dying his hair this weekend, or can't wait until he can get into the pool so I can pour lemon juice all over his head to bleach his hair back to "surfer boy blonde?"

Some of the worst mistakes of my life have been haircuts.
Jim Morrison

Strollin'

2010-04-16T20:52:00.002-05:00

Wow! The stroll has already come and gone. I feel as if we have been preparing for the big day for months and now it is over...until next year... so for now we can only plan how to make it bigger and better.

Once again, it was an amazing day filled with great friends, new friends, many supporters, and many amazing people.

Not only did our team grow to close to 100 this year, I believe the stroll was a much bigger event as well.

Again, driving up brought a whirlwind of emotions. Not knowing what exactly to expect, who will would see, and simply seeing all the masses of people together for a common cause was so overwhelming.

Again, flashes of last year danced around in my head. As I tried to chat with friends I had not seen in literally years, introduce myself to new friends this beast has blessed me with, and try to pay attention to close friends and family, I could not help but picture last year.

Last year, we had Diastat out and ready, Jake was strapped into a stroller and he was wearing the lovely blue helmet. Now, here he was , just a year later, running, climbing and chatting with friends, family, and teachers.

I could not help but praise God for every minute he has given us with this little boy. Praise him for how much he has helped Jake heal. Praise him for helping our family get through this and Praise him for the support we have been given.

Walking around the grand Dallas zoo last week, you could not walk very far without spotting an "All 4 Jake" tshirt. We were everywhere! We had invaded the zoo! It was so very touching knowing people had come out of the woodworks for our little guy and our family.

What had we done to deserve such a overflow of kindness? Why were all these people there for us?

I still can't wrap my head around the magnitude of support and blessings that have been given to us throughout this ordeal. Witnessing this support first hand, through the wearing of t-shirts, selling of cupcakes, making of ribbons, gathering of donations, prayers, and words of kindness, is simply surreal to me. What have we done to deserve such support?

On top of all this support. ASI gymnastics has graciously offered to host a birthday party for Jake next week. This will be Jake's first "real" party! David Holley, with the Epilepsy foundation and ASI gymnastics, whom I met last year, took it upon himself to provide Jake with his first party in a very padded enviroment! (this very much eases mommy's anxiety!:)) Donations can still be made in Jake's name to the Epilepsy foundation. We would love to raise at least 200 more dollars, the cost of the party.

Thanks you all for all your support! Your presence, whether physical or emotional, meant the World to us!

At times our own light goes out and is rekindled by a spark from another person.
Each of us has cause to think with deep gratitude of those who have lighted the flame within us.

How far he has come

2010-04-09T10:38:00.001-05:00

I have been reflecting upon where Jake was a year ago and can not believe how far he has come! He is my hero!

April 2009

I simply pray that this "good run" continues!

Faith isn't the ability to believe long and far into the misty future.
It's simply taking God at His Word and taking the next step.
- Joni Erickson Tada

Stroll for Epilepsy!

2010-04-07T10:57:00.003-05:00

The Dallas stroll for Epilepsy is just days away! If you are in the area, please Join Team All 4 Jake and come with us for a fun day at the zoo, raising Epilepsy awareness.

If you can't make it but would like to donate to the awesome cause visit Jake's page

There is also another great way to donate, but also get somthing in return. PLease visit ASI's silent auction!

ASI SILENT AUCTION
You have until the 9th!
Birthday Parties
One Year of Gymnastics
Private Lessons
and three great sports packages
NNS O’Reilly Auto Parts 300
Friday April 16
2 Tickets to the Novacopy Luxury Suite
Garage and Pit Pass
Includes access to events all day with food and beverage
Value $300
NNS O’Reilly Auto Parts 300
Saturday Package April 17
2 Tickets to Novacopy Luxury Suite
Garage and Pit Pass
Includes Food and Beverage all day!
Value $400
Texas Ranger vs. Detroit Tigers
Friday Night, April 23rd.
4 Tickets to Luxury Suite
Includes food and beverage, food value $200!
Value $400 - 5 Packages available.
Stop by any ASI location today to bid!

let's go strollin'

"Nate's walk"

2010-04-03T20:06:00.007-05:00

During Spring Break the kids and I have taken to going on a walk after dinner. The Texas Spring evenings are absolutely beautiful and it is a wonderful way for all of us to let our dinner settle, as well as shake off any extra energy that may be hindering us from settling down for bed.
The other night they decided to make it a "Nate's walk",or as most would call it a nature walk.

Jake and I have been talking about Easter, The Resurrection and "Punches Pirate," Pontius Pilate.

He is enamored by learning the crucifixion of Christ.

So this particular evening on our "Nate's walk" Jake dressed himself to go "seize Punches Pirate." He was armed with head gear and even a sword.

Every tree he spotted become the cross Jesus was nailed to, every, any sort of sharp object, became the throns that adorned Jesus's head. And every moving object became "Punches Pirate," so Jake would chase down the "Pirate," to "capture and seize the bad guy." (his words not mine)

All this chasing and seizing and blood talk, made me realize maybe I should keep the bible lesson teaching to the pros at church. Apparently all my son got out of my Easter, resurrection bible study, was blood, guts and the enemy!:-) (/j/k he actually learned a lot from our little talks, and I even think he gets the TRUE reason fo rthe day)

Meanwhile, as we chased the villians, Addison collected "things from nature."

Can you tell whose pile is whose?

I love our after dinner walks and very much look forward to them every evening. Each one is certainly a new adventure.

I am so very fortunate to have this time with my children and discuss the things that really matter and make us who we are, like the Death and Resurrection of our Savior, Jesus Christ.

Wishing you and yours a very blessed and Happy Easter.

"He is not here: for he is risen, as he said. Come, see the place where the Lord lay. And go quickly, and tell his disciples that he is risen from the dead; and, behold, he goeth before you into Galilee; there shall ye see him: lo, I have told you. And they departed quickly from the sepulchre with fear and great joy; and did run to bring his disciples word. And as they went to tell his disciples, behold, Jesus met them, saying, All hail. And they came and held him by the feet, and worshipped him. Then said Jesus unto them, Be not afraid: go tell my brethren that they go into Galilee, and there shall they see me."
-- Matthew 28: 6-10 KJV

Race for wishes

2010-03-31T20:56:00.000-05:00

ON Saturday we got up bright and early for some family fun running!
We participated in our first 5k as a family, the Make a Wish Race for Wishes.

It was a blast!

Jake was so excited he even got up and dressed himself.

Being almost 8 months pregnant, Matt never having run a race, 2 small kids and a grandpa, we were very unsure how long we would last on this cool, windy morning. We even threw around the idea of ditching the 3.2 miles and runnig the 1 mile Fun Run instead.

However, the momentum and energy of the event got the best of us and we all finished the 5K!

Before the race Jake got to meet up and superhug one of his wish givers Christine!

Addison did a super job and ran the entire time, except when she had to stop and walk to wait on her pacers, Matt and Papa.

She can't wait to run another race.

Jake and I alternated running and walking. He did a great job and I was so very proud of him. As he approached the finish line his adrenaline got pumping, he picked up his speed, and he was grinning from ear to ear.

The crowd energetically cheered for the "little wish kid wearing the green shirt." Jake followed, and also cheered for himself. This kid never stops smiling, but I don't know if I have EVER seen him be so proud of himself.

As I parent, as I watched him cheer, run and smile across that finish line, the past year flashed in front of me.

Was this the same kid that a year ago, almost to the day, couldn't even hold his head up, much less walk?

Last year at this time, we spoon fed him all his meals in a highchair or on the floor surrounded by pillows.

Last year at this time, he would go through a couple shirts a day, as they were quickly soaked from his excessive drooling.

Was this the same child, who had sat in the ER far too many times in 9 months, waiting to be sewn back together?

Was this really my son running toward me, who was basically in a drug and seizure induced coma for 9 months of his life....just a year ago?

All these thoughts swirled inside my head in the brief moment as I saw the complete elation in his little face as he crossed the finish with a cheering crowd backing his every step.

That moment, with my daughter as happy as a lark from completeing one of her first milestones, my husband and family by my side, and my little hero dashing toward me, I am quite sure I have never been so thankful, nor proud to be a mommy in my life!
My kids are fighters!
They sure as heck can conquer any darned obstacle thrown at them.

The Make a Wish Foundation is so much more than I ever thought it was! For them we are Thankful! They truly make wishes and dreams come true!

Let us rise up and be thankful,
for if we didn't learn a lot today, at least we learned a little,
and if we didn't learn a little,
at least we didn't get sick,
and if we got sick, at least we didn't die;
so, let us all be thankful.
- The Buddha

Purple Day!

2010-03-29T15:57:00.006-05:00

Friday was Purple day for Epilepsy awareness. This is an international event gaining more and more speed every year. This year my coworkers supported the efforts and they all donned purple for Epilepsy Awareness.

This Friday was "birthday breakfast" and my department was hosting this month. We all get together and bake and cook breakfast to honor all thebirthdays in that month. I got there early to set up, but soon become overwhelmed emotionally and had to duck out for a second.

As more and more faculty and staff took their place in line for the great buffet, I could not believe my eyes. The lounge was overflowing with purple!

People were even metioning they had heard radios discuss this special "Purple Day."

I am not a huge fan of purple, but to see everyone backing us and showing their support was so, very touching and I could not get enough of that color I once despised.

I think to the majority of the purple wearers, it was simply an excuse to get to wear something other than ther Apollo spirit wear to school with their jeans. However, it was soo much more to me. To see soooo many wearing this color was so amazing. I can not Thank them enough for their great support! When I announced that our bossman had ok'd the purple wearing instead of our usual Friday spirit wear I was certain we would have a few supporting me, but never almost the entire school. I am the Special education dept. dept head and I know sometimes when I am chasing teachers down about IEP's, or students needs, of questioning them about TAKS, I am not their favorite person. So seeing this sea of purple was extra special.

One of my coworkers whom is an avid baker, cupcakes being her speciality, even went as far as to offer to bake purple cupcakes for this special day. Apparently, Mrs. Harper in her endless search for the perfect cupcake, had run across the Great Purple Cupcake project

She made several dozen cupcakes for the day to be sold benefitting the stroll for Epilepsy, Team All 4 Jake, and the Epilepsy foundation.
Dallas stroll for Epilepsy,
>
Needless to say I was blown away about the efforts of my fellow Panther's and Mrs. Harper.

Thanks fellow Panthers! You make each day a little easier!
I am sure proud to be a Panther!

"Love and kindness are never wasted. They always make a difference. They bless the one who receives them, and they bless you, the giver."

What was that?

2010-03-26T09:34:00.001-05:00

I got a great email from Jake's teacher the other day. I hound those ladies at his school, on a daily basis, to try and keep up with his accomplishments, areas in need of improvement, and for the daily seizure count. I am certain, they are ready for this school year to be over, so the crazy lady with the ADHD boy can move on to someone elses room!:-)

Mrs. McVay, or Ms. Vay, as Jake calls her, was reporting that Jake was having a great day! However, she also added some extra details that had me in tears with laughter.

Jake is very spolied, to say the least, by these amazing group of teachers in his class. During nap time, in order to keep him quiet, and to closely monitor his tc's, Jake's sleep cot is positioned very near these girls. He LOVES it! Well, apparently, on this particular day, Jake decided to conjur up some conversation berfore he drifted off. His conversation went as follows:

"He did tell me as I was sitting there with him trying to get him to go to sleep that I “needed to wear more clothes to cover up my boobies” hahahahahaha! So I covered up with my cardigan and he was like, “I can still seeeee themmmm!!” He was dying laughing. It was pretty funny. "

This statement came on the tails of another similar incident at the grocery store just a couple days earlier. Therefore, I was hysterical with laughter.

On Sunday , Jake and I went to the grocery store. As I picked out some flowers in the floral dept., the florist asked Jake if he would like a balloon. He , of course, said yes. She gave him a bright blue balloon, which he quickly popped. She then went and got him a new one. This one, however, was complete with a little clip, to weigh the balloon down, so it wouldn't float away. The clip could also, obviously be used to clip the balloon onto his clothes so he won't have to mess with hit. The florist then proceeded to clip the balloon on Jake's jean pocket.

Before I have a chance to take my precious son, by the hand and turn to leave, he turns to her and asks:

"Can I clip it on my penis?"

I almost asked him "what was that?" as I was certain my little angel did not just say that, but then it clicked...yes he did. I am not sure I have ever moved so fast away from one particular scenerio in my life.

Where does he come up with this stuff?

"Kids say the darndest things!"

The white stuff

2010-03-24T09:35:00.001-05:00

Only in Texas! This is what our second day of Spring looked like. I could barely believe my eyes, as I peered out the window this past Sunday morning. Of course , I heard the forecast of snow, but never imagined the magnitude we would be impacted.

Addison thought it was great. The minute her feet hit the floor out of bed, she was already grabbing coats, scarves, mittens and hats! The rest of us were not so excited. The warm coffee, while wrapped in a cozy blanket on the couch, reading the Sunday paper was far more inviting, than the cold, wet snow.

Jake tried to brave the blustery wind and wet for a little bit, but much rather preferred to observe the action from indoors....smart kid!;-)

and to think just a few days prior, we spent our days of Spring Break riding bikes, taking walks, having picnics, and playing at the Dallas Arboretum.

You have to love Texas weather!

We had a BLAST at the arboretum this year...as always! But for the first time, we were able to get the twerps faces painted. usually, the line is literaly a wait of a hour or more. However, for some reason this year, we were one of the first families to snag a spot. They were so proud of their new creations. It was so much fun.

In Jake news....he has been improving or rather, we have had some improvement, after the steroid treatment. However, unfortunately, he still is fighting off nightly nocturnal tc's. They are much shorter, than even noted on video a couple posts ago, but they are still present.

Damn Beast!

For the LORD your God is the one who goes with you to fight for you against your enemies to give you victory."
Deuteronomy 20:3-5

The wedding

2010-03-17T19:45:00.000-05:00

ON the day Jake got home from the hospital, Matt wanted to take us all to dinner. Jake took a shower and was urged to go get dressed, while Matt and I got ourselves ready.

When I finally emerged from the bathroom after my primping, this is how I found our son.

He informed me he was ready to go to dinner. I told him he couldn't go like that. He then responded "well, when I go to a wedding this is what I am going to wear!"

Nocturnal tc's

2010-03-10T17:59:00.003-06:00

Damn these darn things!

They are back.

So is my disappointment.

I REALLY thought "this was it!" I knew it was a long shot, but I simply just had "that feeling!"

Jake, aside from the tc's, has been doing AWESOME, though! His critical thinking, memory, talking, and coordination are just amazing to me. I had thought he had been so much better for a while, so it is such an astonishment to see how much he can continue to improve and how resilant kids are!

I truly believe his attention is TONS better too. For the first time, maybe ever, he sat and we played a good 45 minutes worth of board games Sunday night. Usually, board games, would last maybe 5 minutes, and that was on a good day. For him to sit 45 minutes and stay on task, was nothing short of a miracle to me.

His teachers have been reporting similar stories at school.

He still has much room for improvement, but for now I will rejoice these baby steps.

Although, I am very pleased with the positive side effects of Jake's steroid treatment, unfortunately the seizures are back.
For the past two nights his seizure activity has been quite active. Last night he had at least 4 nocturnal tc's.

Nocturnal seizures are usually tonic-clonic. They might occur just after a person has fallen asleep, just before waking, during daytime sleep, or while in a state of drowsiness. People who experience nocturnal seizures may find it difficult to wake up or to stay awake. Although unaware of having had a seizure while asleep, they may arise with a headache, have temper tantrums, or other destructive behavior throughout the day.

Eventhough, he has had seizure activity and maybe even increased seizure activity, we are going to try and follow through with the rest of the 9 day wean of his oral steroid, prednisone.

Last night, as Addison and I watched meanigless tv and Jake fell into a slumber beside us, his seizures started. We were able to capture a couple on video. This is what we see several times on most nights.
(As this one seeems longer than many, you will see me swipe the "bump" on his chest. I used the magnet to activate the VNS, vegal nerve stimulator)
(

I see these in person quite often. But witnessing them on a screen, is pretty disturbing. I absolutely can NOT believe that I am watching my little baby boy. His contorted face and body, the weird noises, the helplessness....how is that my precious son?!

He has been battling this beast for about 18 months and I simply can't believe this is my son. I have watched him fall, bleed, cry, slur, drool, seize, and completely regress. I have accepted it all, but seeing it on a screen is absoutely unbelievable. There is no way I am watching my baby boy!

No matter how steep the mountain - the Lord is going to climb
it with you.
- Helen Steiner Rice

Normal , at least for now

2010-03-07T19:34:00.005-06:00

We are out of the hospital!

Matt was with Jake , as he was admitted Wednesday for the BIG steroid treatment. While it was absolutely killing me, being away from him and not being able to be the one to interrogate the doctor and nurses with questions, I needed to stay at work for in the infamous TAKS test.

I arrived Thursday morning with Addison. We relieved Daddy of his duties. Addison also met and talked with the child life specialist. She has been a having a tremendously difficult time watching Jake continuously seize and be shuttled to and from appointments and hospitals.

The meeting , along with weekly counseling sessions at school, have had a very positive effect on her. She still gets very weepy and sad watching Jake and his everyday struggles, but also understands it a bit more now.

It is so heartbreaking watching both my babies struggle so much emotionally and physically. I want to just yank It from both of them and protect them from all of this.

As we arrived Thursday morning, I was disappointed to learn that Dr. H had already met with Matt, therefore I probably wouldn't be able to bombard him with questions!

Matt however reported that Jake's last seizure was the previous night. That was great news.

Dr. H ended up coming back around Thursday evening and informed me that Jake was doing great! Not only did he look a lot better, so did his eeg!

It turns out by the time we left Saturday morning, Dr. H used the words 'normal" and eeg in the same sentence!! This has not happened in at least 18 months!

You can only imagine our elation right now! I realize things could make a turn for the worse, as they did August 2008, but for now I am praising God!

Not only does his eeg, look very much improved, but so does Jake.

He is definitely swollen from the treatment already, however he is doing so well!

His mind and his conversations seem so real, normal, and clear. I find myself just staring at him while he talks, wondering how things can turn upside down so quickly.

He laughs, he remembers, he jokes, he speaks so clearly the past two days. I am beside myself with glee! I have said it before, but I guess I didn't realize how much he could truly improve. Even his drooling and his gait appear so much better to me!

I honestly can't quit staring at the kid and waiting to hear what comes out of his pretty, little mouth next.

I am , however, cautiously optimistic. We will take one day at a time, but for now we will live and love in this moment! Because here in this moment, with my family all in own house, and healthy for now, I am elated and could absolutely not ask for anything more. I have all I have ever wanted! I could not ask for more!

"I remember my affliction and my wandering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for his compassions never fail." ~Lamentations 3:19-21

Darn it man!!!

2010-02-27T08:06:00.003-06:00

Well DARN IT!!!

Since Monday morning Jake had not had a seizure!! I read from some very wise Doose mommy's on an online support group that giving OMega 3 vitamins might help with seizures, clarity, and/or overall general health. What the heck, I thought and gave it a try, it certainly can't hurt! So since I had started giving it to him, Jake has not had a seizure! Not at nap , nor during the night......until yesterday.

At school, his awesome teachers, Ms. McVay and Mrs. Chavez, reported that Jake had a pretty active nap, regarding seizures!

Damn it! that's what I get for opening my big mouth. About the same time my little guy was seizing, I was telling this same support group about our suspected success with Omega 3.

Unfortunately, Jake was a seizing machine last night as well. I think he had at least 4 maybe 5. A couple of these a considerable amount longer than usual. usually these nocturnal tc's will stop as quickly as they started, in a couple of seconds. However, last night a few of these damn things were between 10-20 seconds.

I am very glad we have an appointment to be admitted this Wednesday.
We are praying that Jake will receive as great of birthday present, as he did last year!

After last April's steroid treatment, his last drop was on his 4th birthday, April 29th.

Although, I look back at his birthday pictures and can't believe how big and swollen he was from the treatment, and still can't imagine and barely believe the life we were living last year, I am soo very thankful for how far we have come!

I pray the same gains for this year!

Leaving that blue helmet behind!

Our dreams must be stronger than our memories. We must be pulled by our dreams, rather than pushed by our memories. - Jesse Jackson

TAKS time

2010-02-24T15:35:00.002-06:00

It's TAKS testing time here in Texas, which means little time for me to post , as I try to get tests in order for all my students and meanwhile try to prepare for the test itself. Novel thought, being a teacher and actually teaching.

Because, it is such a busy time of year, it is difficult for me to keep up with blogging. So here goes a quick update.

Jake will be going back to Cook's next Wed. He will be admitted for 3-4 days for another round of steroids. The hope is to once again try and kick some Epilepsy butt, and make these darn nocturnal tc's away!

While I am comfortable with where we are and our daily living. There is certainly room for improvement. Jake is still having 2-5 nocturnal tc's a day. Just when I think things are great and he won't have ANY for a couple days, they will come back longer and more intense.

Therefore, we are going to try and beat this beast down, so he and his little friends will not come back!

Wish us luck!
We have our game face on and will show no mercy!

Never give in.. never, never, never, never, in nothing great or small, large or petty, never give in except to convictions of honour and good sense. Never yield to force.. never yield to the apparently overwhelming might of the enemy.
Winston Churchill

Happy Valentine's Day!

2010-02-14T16:17:00.003-06:00

Hugs and Kisses from Addison and Jake!

And an out take. Jake was still recovering from a bout with a virus and did not appreciate being outside in the cold. His big sister had more sympathy than I did apparently. I was working for the shot!:-)

Since last week a bunch has changed. We tweaked Jake's meds a couple a weeks ago and it started out great. We even had a 3 day stint with NO SEIZURES!!!

However the minute I bragged about this feat, i got a call from his school and he had , had two seizures during nap.

Damn it!

That's what I get for opening my BIG , Fat mouth.

So, since Monday, we are back to having 1-3 seizures a night and 1-3 during naps at school.

Six seizures max sounds great to me for some reason; and I don't even blink an eye. I assume coming from where we have been the past year and a half so much has changed for the better, that the only way to go was up.

When Jake seizes, for the most part, he is safe in a soft bed and peacefully sleeping for the most part. Although these tc's still scare the crap out of me and I find my heart skipping several beats when I witness them, I am sooo damn thankful, we have not seen myoclonics or drops since Jake's birthday last year!

You can't have a better tomorrow if you are thinking about yesterday all the time
C. Kettering

Geaux Saints!

2010-02-07T08:44:00.004-06:00

I know, I know. We are typically a Dallas Cowboy loving family. However, while Jake was staying at Cook Children's for a week, the week before Christmas, a little transformation was going on!

One of Jake's favorite nurses/EMT's conducted a little brain warping. (it's very hard to say "favorite" ,as Jake adores everyone at Cook Children's, but Richard is pretty close to the top) Nurse Richard taught Jake to chant Geaux Saints! Richard is a true Cajun' and has an awesome, distinct Cajun' accent to prove it. Jake loved to hear his nurse simply talk to him with his mesmerizing twang. To this day if you ask Jake who he wants to win a football game, any football game, he responds :

"The Saints!"

So, at least for today, this house will be cheering for the New Orleans Saints!

Good news for the day!

Jake has been seizure free since Friday morning!!! No nocturnal tc's!!! I surely hope this 2 day streak lasts! (KNOCK ON WOOD)

Geaux Jake!
Geaux Saints!

Some people are always grumbling
because roses have thorns;
I am thankful
that thorns have roses.
Alphonse Karr

Surprise!

2010-01-28T13:38:00.003-06:00

The kids have something to tell you!

Jake and Addison are going to have a baby brother!
They are beside themselves, to say the least! They read to him every night, have named him, and are constantly touching and kissing the sweet boy.

I have been waiting for the "right" moment to announce this surprise and figured today is as good of time as any.

Yesterday we had our 20 week sonogram. It is always such fun seeing the miracle inside of you grow, wiggle, and develop.

the good news:
The baby looks great. he was a very active little one, putting on quite the show for us on the monitor. It is truly amazing and breathtaking how little he can be inside my belly and how much you can actually see from a simply sonogram...just astonishing.

I went into the appointment thinking I was 19 weeks and a couple days. However, after a very long and intense sonogram, it looks like I am 21 weeks and a couple days. So, little man should be expected to make his arrival in early June!

The bad news:
I thought the sonogram tech was simply trying to give me tons of pics of the little guy, therefore having the sonogram last about a hour. However, I soon realized that something may be wrong.

Apparently my umbilical cord only has one vein and one artery, a condition sometimes called SUA. A healthy umbilical cord should have a vein, supplying the baby with the food, nutrients and oxygen he needs, and 2 arteries taking the junk out from the placenta that the baby doesn't need. I only have one "junk drain." This can cause many problems and birth defects with the baby. Although, this is a VERY scary diagnosis, especially if you are stupid enough, like me to google it, I am optimistic that "Miracle , Oops baby" will be just perfect!

The course of action right now, is simply for more frequent trips to the doctor to measure the baby and take some pictures.

Please say a prayer for Baby Peters! We are so blessed to be given another chance to be parents!

Jake news:
Jakey boy went through an awesome seizure free patch about 2 weeks ago. He had no nocturnal tc's we caught, and besides some battered and bruised limbs, the boy has been great.

Then...we went to the doctor last week and bragged about his period without seizures. Call it a Jinx, but now he is having 3-5 tc's a night.
I called today just to inform the dr. that from my last status report things have changed. i expected nothing to happen form it, but just for it to be journaled.

I recently heard from the nurse and she said Dr. H was taken back by this news and 3-5 was DEFINITELY too many to be having every night.

Therefore, I am to tweak some medicine. If the tweaking does not bring positive results, we are back at Cook Children's for another round of steroids and oral steroids once we are released.

Seriously, does this roller coaster ever slow down? because I want to get off!:-)

Please say a prayer for Jakerdoodle as well.

A dear friend and coworker sent me a couple verses today. Although I have read and heard this one many times, it really stood out to me on this day.

11 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call upon me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart.
Jeremiah 29:11-13 (New International Version)

(picture to be added later today)

Help for Haiti

2010-01-25T14:14:00.003-06:00

We had a very fun and busy weekend. I skipped almost all of the much needed work that needed to get done around the house to hang with the kids, run errands, and go to parties. On Sunday, before Addison was to attend another party, the kids had a lemonade stand.

This wasn't any regular lemonade stand. All the funds raised are going to a Haiti relief fund.

The kids have been watching the news and, of course, the coverage from Haiti is all they have been seeing. They also caught glimpses of the huge telethon on Friday. When little minds see things like this, it is obviously very difficult for them to comprehend the magnitude of the disaster that is actually taking place.

After, what seemed like hundreds of questions about the earthquake and the effects it had on the country and its people, they, or Addison finally seemed to get it.

She explained to me what the children over there don't have, including a St. Jude!:-)
She was beside herself and wanted to help.

Not knowing how, I was reminded of a High school who posted on Face book that her kids had a lemonade stand to raise money for Haiti and to help her kids understand the magnitude of devastation.

Therefore, this is what Addison and Jake decided to do as well. Within less than 2 hours of "work" they raised 60$! I was so proud of them! They explained to all the customers where the money was going and why they felt they had to give. I have to admit watching them work so hard to to explain and sell their product certainly brought a tear, or several, to my eyes! If I said a tear, I would be lying, as it can only be described by that big lump you get in your throat caused by such pride for your little ones, and emotion because of their actions.

To learn more about what you and your children can do together to help others around the world please visit:

www.kidswithcourage.eventbrite.com

"You must love and help your neighbors just as much as you love and take care of yourself." (James 2:8)

seriously?!

2010-01-21T10:33:00.004-06:00

I seriously need to get better about popping in and blogging. I am getting so far behind updating on the craziness that is , "The Peters household."

This weekend was certainly no exception to the crazy rule!

Matt was out of town fishing, so I enlisted some help from Babi and Papa in shuttling the twerps to and from their many activities. The kids and I grocery shopped and ran errands.

On our last errand of the day, Addi and I were unpacking goods from the kitchen, waiting for Jake to come in from the garage, as he is always the last one in, because he finds it necessary to explore the garage for hidden treasures EVERYTIME we park. It is even more fun to him now, as Matt has done an excellent job reorganizing, the pit, we call a garage.

It had been a couple minutes so Addi and I start to holler for Jake to come in. We finally hear him, and then the door slam, and then an "ouch!"

I advise the booger bear to come to me in the kitchen so I can kiss his boo-boo. he doesn't come. I then, more harshly tell Jake to come here, as it is pretty quiet now. He then yells to me..."Someone open the door!"

I am dumbfounded, as he knows exactly how to open the door and he is inside now, where he is supposed to be.

after a few seconds, i go to help him.
There he is, looking up at me with a worried look and says "puh-lease, open the door."

I look again, and his hand is completely shut in the door on the hinge side.
We open the door and get his hand out, and thankfully all parts are still attached! PHEW!

However, I couldn't get the tip of his fingers to get circulation....so I wait, and wait for the tiny tips to get pink again.

After much chaos, and many phone calls, Jake and I head off to the er once again because circulation is not coming back
.
The hand , after being xrayed, was not broken and circulation was now fine. He did however have a nail that was about to fall off, and most likely a sprain. So we are sent home with a hefty little splint and a smile.

the following day Jake had his first bowling birthday party. I urge hm to bowl with his left hand , as his right is still in a splint. Not 30 minutes into the party it happens...he hurt another finger on the other hand.

I refuse to run to any Dr. after the previous nights expeditions, so I kiss it and assure him it will be fine.

As the hours and days go by the newly injured bowling hand, gets more and more swollen, and more and more purple.

I tell myself that I will ask Dr. H about it at his routine neuro appt.on Tuesday.

The neuro appt. was great! I felt as if it was a very positive one.
When I finish rattling off a trillion questions, I nonchalantly ask Dr. H, if he thinks Jake needs an xray or if he feels it is just a sprain. He plays it safe , of course, and sends us upstairs for an xray. About ten minutes later, I was told that we need to head back down to orthopedics, as it did look like he broke his hand/finger!

so we returned downstairs to orthopedics and it is confirmed that Jake has a fracture and needs another "cast" on his other hand!

Needless to say, Jake LOVED the attention and is very proud of his "new hands!"

Tuesday was a very busy day for us, but the "one stop shopping" while at Cooks was great. Like always we were treated fantastically and I can only imagine how much worse all the dr.s and waiting could have been.

Here is a pic of the little trooper. Unfortunately I only have a fuzzy one from my phone right now.

I am soooo very thankful for everyone that helped us this weekend in the ongoing drama, that is Jake's life and to the many nurses and dr.s that helped us at Cook's. I also praise the Lord that Jake's injuries were as minor as they were. Although, he will be out of gymnastics for a couple weeks, I think he will be just fine!:-)

I can't help but look at the past couple days and how things transpired and not laugh. I grin, chuckle and sometimes even belly laugh thinking about it. Seriously?! who does this kind of stuff actually happen to?

He is so Brave! I am soo proud of him!
And Joshua said unto them, Fear not, nor be dismayed, be strong and of good courage: for thus shall the Lord do to all your enemies against whom ye fight.

Joshua 10:25

sleeping is more dangerous than it sounds

2010-01-11T19:00:00.004-06:00

Last night I had just fallen asleep, after hours of tossing and turning, and heard a humongous THUD!!

I have heard it before, so I hesitated, braced myself and then made my way to the side of the bed where the obnoxious noise rose from.

I see Jake's pretty, little, now bloody, head, wedged in between the nightstand and our bed.

His face was already a bloody mess, but I was worried about his head. After much searching, and thorough checking the head had no wounds! I now was able to work on the source of the blood.

It seems , as Jake tumbled off the bed, not only did his teeth make it almost all the way through his lip, but on the way down, I am assuming the nightstand, tore away his top layer of skin from the bottom lip.

It was a very nasty sight, BUT was not caused by a seizure. I have said it before and will say it again, Blood is sooo much easier to handle when it is not stemmed from a seizure!

The boy looks like he has been in the ring with Tyson!

Much to my surprise, because of the salt, the kid was still able to eat almost an entire jar of pickles for dinner, hence the pickle seed on the bridge of his nose.

still catching up- ICE at the Gaylord

2010-01-11T14:06:00.010-06:00

A couple weeks before Christmas we took my dad to the Gaylord Texan for his birthday. Every year they have an amazing ICE display. This year it happened to be based on The Grinch, one of Addison and Jake's most favorite movies.

When buying tickets we were warned that the exhibit reaches a blustery temperature of only 9 degrees! Needless to say I wrapped the kids up in as many layers as I thought would fit under the provided, lovely, blue parkas!

Because with extreme changes, we may see more seizures, I was allowed to roll Jake around the exhibit in his stroller for "medical neccesity." Good thing I did, because the child did not like the cold one bit. After participating in some fun that the display had to offer,
he then retreated to the comfort of his limo, the stroller, and only seemed to show signs of life after a much needed cup of hot chocolate. Addi on the other hand could have slept in the Grinch's bed, as she thought it was fabulous and the icy temps never appeared to phase her.

This was truly such an amazing work of art it was breathtaking. I was so excited to be able to share it with the kids. They had a great time and were in awe of the wonder that is ICE.

Last Christmas, this kind of venue would have been my worst nightmare and an anxiety attack waiting to happen, as all the surfaces are rock hard. I can just picture Jake busting his chin or his head, after falling from a seizure.

Although we still have some mountains to climb, in regards to seizure control, Jake is doing a million times better. For this we are blessed.

Blessed be childhood, which brings down something of heaven into the midst of our rough earthliness.
Henri Frederic Amiel

Catch up!

2010-01-03T18:47:00.009-06:00

It has been a long time since I have posted and you have missed out on some great events we have been involved in during this Christmas Season.
This is going to be a picture post of our many outings( changed my mind last minute...one outing at a time), so I won't feel so far behind.

Make a Wish gingerbread house making

The weekend before Christmas Make a Wish invited Jake to attend a gingerbread house making event. I never now what exactly to expect when fun things like this come up, but when it comes to MAW, I certainly, almost always underestimate the level of fun, planning and dedication that will be given to these kiddos.

The kids were given chef aprons, breakfast, gingerbread houses, and special appearences were made by some very special figures here in the Dallas area.

Rowdy, the Dallas Cowboy's mascot, calling Tony Romo, Jake's hero!

Addison was made to feel not like "the sister of a wish boy," but rather as an immediate part of the group. We had a great time! It was certainly a great way to get the Holiday season underway!

Jake loved looking at the lobsters maybe even more than he loves to eat them

I think the kids could have possibly eaten more candy than actually went on their masterpieces.

The final products!

They were so proud and had a great time! I am definitely going to make gingerbread house making a tradition in our house for Christmas time. We rae so blessed to have been surrounded by amazing people willing to give up their time for our special kids. Thank you Make a Wish! Thanks for everything.

Make a wish, have a ball, dream a dream, be it all... If you want it, you can get it, But to get it, you've got to want it. Anything you want to try, Just let go, fly high... and Make a Wish. Tom Chapin

Merry Christmas!

2009-12-25T12:47:00.006-06:00

Merry Christmas!

On this very special day, I only want to take a small moment away from my family at the computer (tons of pictures and stories to come , however).

I came across an article this morning in The Dallas Morning News, that was not only eye opening, but also heart opening as well.

As I was throwing the paper in the recycling bin, along with the hundreds of boxes and wrapping paper littering the floor of our adobe, I hesitated. I was certain I would have no time to read the news and just was going to throw it away. However, after a moments hesitation, I decide I would make time to read the periodical.

This article stood out to me, for obvious reasons.
http://www.msnbc.msn.com/id/34584053/ns/health-kids_and_parenting/

As I read it I could only think of how much my family reminded me of the family I was reading about. So normal, so loving, parents to a young crew. However, there are some very obvious differences.

As I finished the article on this Christmas Day with Jake playing only feet away from me, it hit me! Not only am I blessed a million times over, but I am also probably not even near as grateful for this life as I should be (are any of us?).

I have anxiety because our baby has seizures, sometimes hundreds a day. I stress over the hurt it causes Addi, watching her little brother take drugs every day, struggle with everyday activities, and being shuttled around herself. I worry that they will never go away and that people look at him differently because of them. I struggle with making the right decisions medically for my child and his brain. and most of all I want to badly to make them go away.

But when it comes down to it, I have him.

I may have to put a diaper on him, have him sleep with us, watch him struggle with numerous educational tests to ensure he is getting the best education possible for his special needs, and alter our daily lives to accommodate him, but we have him. I can hold him, help him to the restroom, dry his tears,wipe his drool, and guide him through life's obstacles.

It was a joy watching our two kids light up with the joy and excitement , that is Christmas and the birth of our Savior.

For this I am blessed.

I have them!

For this I am Blessed, indeed!

"When the star in the sky is gone, When the Kings and Princes are home. When the sheperds are back with ther flocks, The work of Christmas begins: To find the lost, To hel the broken, To feed the hugry, To release the prisoner, To teach the nations, To bring Christ to all, To make music n the heart."
~Howard Thurman, The Work of Christmas

Great news!

2009-12-17T20:53:00.006-06:00

Dr. H came in this morning. I was still dumbfounded and shocked by yesterdays news that I did not want to say anything or ask any questions, because I was simply afraid of the answers!

So , he walked in and I stood.
I stood waiting for news, before I could ask and get answers I didn't like to hear.

However, I did notice that as he walked in he had a slight smirk. This was huge on his excitement scale, as he is always very stoic and professional. The grin was a bit of foreshadowing for me.

Because I stood, for what seemed like hours to hear something, he started to inform me of the findings from the previous nights veeg.

He stated plain as day:
It looks so much better! He saw about 50% improvement from the veeg just the night before!

50%?!! to me that is huge!!

Obviously, I was very pleased with that news and have been on a high ever since those fantastic words entered my ears. A high, that even Jake's awful moodiness and temperament from lack of sleep, side effects of steroids and missing home, could not bring me down from.

Our boy is a fighter! I pray that tomorrow will bring such sweet words as well.

Jake had a fun day today.

He had some music therapy

decorated a Christmas tree for his room:

and even saw some sites around the hospital:

We usually take a couple walks around the hospital each day to see what is going on, get our legs moving, and simply to get out. Tonight was extra cool....
Tonight we were decorating Jake's Christmas tree that Leslie brought over for him. She added some candy canes to add a little extra pizazz to the tree's limbs. Jake put a few canes on the tree then said to me matter of factly:

"I want to go give these to the other sick kids."
So as we walked tonight, Jake took his box of candy canes and passed them out to people he saw wishing them a Merry Christmas!

This was definitely a touching moment, as not only I teared up by his actions, but so did some of the receivers of his candy canes. I am unsure if they were weepy at the sight of a sick looking boy, being wheeled around in a wagon with "things" stuck to his head, or if his actions were simply that touching. But none the less, I think the kid captured the true spirit of Christmas.

He never ceases to amaze me.

"Let us remember that the Christmas heart is a giving heart, a wide open heart that thinks of others first. The birth of the baby Jesus stands as the most significant event in all history, because it has meant the pouring into a sick world the healing medicine of love which has transformed all manner of hearts for almost two thousand years... Underneath all the bulging bundles is this beating Christmas heart."
-- George Matthew Adams (The Christmas Heart)

update from Cook Children's

2009-12-16T21:19:00.004-06:00

We are ending our second day here at Cook Children's in Fort Worth. The doctors, nurses and staff are simply amazing and really know how to take care of us. No wonder Jake LOVES coming here.

Yesterday Jake was hooked up to the leads for a veeg, video eeg. The purpose was determine if Jake really needed another dose of steroids.

We did the timeline and made a connection to the nocturnal seizures starting back up in September to the time we were given generic Depokote. The math added up and we all had our suspicions that the generic was the reason for the mass return of the beast!

The night after the cluster of seizures on Monday morning, Tuesday. I did not see any seizures for Jake. This was also the first night I started back with the "real Depokote." The neurologist wanted to make sure the switch back would not "solve the nocturnal tc problem." I was very hopeful.

However , last night Jake had 7 tc's. This morning Dr. H reported to us his findings of the veeg that night. They were not at all what I expected. I don't know if they were what anyone expected for that matter!

The eeg was worse than it was when we were released last April after a 10 day hospital stay. Continuous spiking was present almost constantly and Jake's background slowing had not improved either.

This was a shock, because Jake appears SOOOOO much better than where we were last Spring. He has not had a drop or jerk since then. He has not had to wear the helmet and his cognition has improved tremendously!

The neuro compared Jake's brain activity to a tv that has constant static. Almost as if Jake is trying to break through the static constantly, as if walking around in a fog. He was greatly impressed that he functions as high as he does with these readings. I wanted to say "that's right , Jake is our fighter! nothing is going to hold him back!"

Because of the veeg results, we started another round of steroids today. I pray that this is our Christmas miracle and we will be able to See the boy that we love at his FULL potential. Who would ever have known that he is not anywhere near his "a" game. I can't wait for the day that we see him at his best and he is able to "bring it!"

I know he will get there, for this we pray. Until then I will continue to learn and grow every day from watching my little man conquer the many obstacles set before him! He truly is my hero.

The Lord will give strength to His people; the Lord will bless his people with peace. Psalm 29:11

We went down to the atrium today to hear a band play. Jake LOVES bands, so he was mesmerized by the musicians and their art.

After the production, he swore he heard Santa coming.

ON the eve ....

2009-12-14T20:40:00.002-06:00

of Jake's hospital stay, things got real bad.
At about 3:30 am, I heard a gasp over the baby monitor (apparently I conked out before I could get him and bring him to our bed). I ran to get Jake and , as I suspected, he was seizing.

No biggie, this happens.

about 20 minutes later, he seizes again.
I fumble around in the dark to find his magnet, but it stops before I can actually swipe his chest to stop the seizure.

About 15 minutes later, another seizure.

This pattern goes on for about a hour and half. Jake seizes, I swipe and turn to go back to sleep.

However, there was not much sleep being had last night.

Between 3:30 and 5:00 Jake had 7 or 8 tc's. Each one with growing intensity and length.

At about 5 after 5 when another one started, I made the executive decision to dust of the ole' Diastat box. I had no choice but to give Jake a good dose of the Valium like medicine to stop these damned seizures!

The Diastat did work and Jake drifted off to sleep like baby. He slept several hours past his normal rising time of 5:45 or 6:00.

There was no way I was leaving him today, so we both took a day off, if you can call it that.

The hospital stay tomorrow can NOT come soon enough.

I am so looking forward to getting up and making the drive, however TERRIFIED of what the night before then may bring.

If you have faith as a grain of mustard seed, you will say to your
mountain, "MOVE!" and it WILL move... and NOTHING will be
impossible for YOU!
- Matthew 17:20

The Good and the Bad and the NASTY beast!

2009-12-11T09:47:00.005-06:00

Let's start with the bad, as it's always fun to cover it up with good!

Jake has been having a really difficult time with nocturnal tc's, night time grand mal seizures. He has been having anywhere from 2-6 a night, mostly every night. So gone are the days of even dropping him off in his room and me picking him back up when he is sleeping. He now just starts in our bed and stays there until the first crack of morning light and then the Energizer bunny is up and going!

I was ok with just the night time seizures, however, on Wednesday I picked the kids up from school to go see Santa. I was changing Jake's shirt in his classroom. I took off his filthy sweatshirt, turned to reach for his crisp,clean, Santa approved shirt and heard it!

The sound of his head cracking on the tile floor.

There he was convulsing right there in the middle of his preschool room. The place of peace, fun and learning for him.

He convulses and I feel like I just stare down at him, unable to help. It was heart breaking to me, to see his classmates, be so compassionate and innocent, as they watched their peer do "strange things" right in front of them. They of course, thought nothing of it. They were inquisitive, but when asked to go play somewhere else, they obliged and went on about their business.

I so wish , Jake was able to just move on and go about his business. He does in his own way, but for adults who witness such events, he is never the same kid in their eyes.

As I finally, got on the floor to hold my baby, he tried to come out of it. The sweet boy tried his hardest to tell me "he had a good day, and took a good nap." His words were barely audible and were made understandable only by a mommy. He then proceeded to try to speak, with a fat, slurred tongue "that he was ready to go see Santa!"

So that's just what we did!
I took my little guys to see Santa! Santa makes everything better!:-)

Although, Jake appeared alright, I couldn't muster up enough bravery to let him walk on his own, or even stand in line by him self. I guess that anxiety will never go away!

I feel like the nasty beast knows that we are trying our best to kill him with another hospital stay and steroid treatment on Tuesday. That's why he is fighting my poor little man. We will kill you beast with whatever measures it takes! You will not continue to control our lives forever!

The good!

Tuesday night we were invited by Jake's heart filled wish givers to join them for a cookie decorating party! It was a blast! The kids had so much fun. We were joined by another MAW family. The kids all got along great and had a wonderful time playing together. The kindness that comes from these girls hearts , never ceases to amaze me! We are so thankful for all they have done for our family and for wearing my little ones out(see picture below)!

Yes, he is dipping sausage in frosting, and going back for more!

straight tuckered out!

"With your eyes full of tears you see clearer;
And with the weight of the world you find strength."
-Zara Rullman

Happy Thanksgiving!

2009-11-26T09:44:00.005-06:00

Happy Thanksgiving! We are so thankful to be where we are today in our new life with Doose Syndrome. Jake has come so far and we have been educated on so much the past year. Thank you to everyone who continues to keep us in your prayers. The power of prayer is truly amazing. Check out where we were with this darn Epilepsy stuff last November. and where we are now! I can't believe that he was able to walk on stage by himself. Sit on stage and I did not fret about him falling face first onto the floor! God Is good! Remember God's bounty in the year. String the pearls of His favor. Hide the dark parts, except so far as they are breaking out in light! Give this one day to thanks, to joy, to gratitude!” Henry Ward

quick update

2009-11-21T19:54:00.002-06:00

Matt took Jake to the Neurologist in Fort Worth on Wednesday. I had called a day before with questions and concerns and gave Matt a big list of things to ask.

Dr. Hernandez was more worried about Jake's nocturnal tc's , than apparently we had been. He scheduled an appointment for December 17th. If Jake is still having seizures at night we are to be admitted to the hospital. We had inquired about another IV steroid treatment , as it seemed to be our saving grace last April, when Jake was averaging 100-200 seizures a day. The child was having more seizures than he wasn't. We were admitted to the hospital for about 8 days and given the iv treatment. Since that day Jake emerged from the 9 month "walking coma" he had been in for so long.

The seizures lessened, the drooling let up, and the little man's personality returned to us! After a couple weeks we even were brave enough to take of the darned blue helmet!

So I am very torn about the thought of another iv treatment. I saw firsthand how this sort of treatment can help and am very anxious about how it may improve even his current condition. However, this will entail a 4-5 day hospital stay. Which will release us a day or two before Christmas. I am nervous for the side effects, the aggression, and the swollen appearance that comes with steroids.

I want him to be able to remember this Christmas as a very Merry one. Last years was riddled with knots on the head, stitches and seizures.

We do trust the Doctors at Cook's very much and know that they truly have the best interest of our little man at heart. So whatever decision they make, we believe it will be the best for our Jake.

"The first time you're broken, you don't know you'll be healed again, better than before."
Sharon Olds

Staples and seizures!

2009-11-13T10:42:00.006-06:00

This has been a wild and crazy week! Jake got to bring home Mo, the class pet. It was great fun watching the kids interact with Mo. Jake even got to show what a great role model he could be. We ventured into Gap one afternoon. This sort of errand is usually nothing less than a MAJOR beating. Kids running, shoes flying, clothes falling....major beating to say the least! This particular afternoon, I gave Jake the job of showing Mo how to act. That had to have been the best Mommy -Idea I have ever had! Shopping was actually peaceful, as Mo and Jake sat by a wall and counted bananas, or whatever it is that monkeys and boys do together. I didn't actually care what they were doing, because I knew I didn't see them running or hear them yelling!

Mo went to the park with us,

and even got to take a trip to the ER.

Jake once again found himself with a laceration. He apparently go into a fight with a wall, while trying to wash his hands at school. However, this time it was not in the usual spot, the chin. Now it was the side of his head. So stitches wouldn't do the job, we had to call in the big guns...Staples! I think he is trying to make sure we are always on our toes!

Jake and Mo were troopers. neither of them shed one tear or even flinched as the staple gun pierced into his head. I can't say the same thing for me.:-)

;

Jake apparently loved the experience so much that he was most upset when I told him we were done and it was time to go. The twerp wanted to spend the night!

The good news?! I am assured that he fell, simply from the grace his mommy gave him and this was not a seizure!

The bad news? Jake has been having many seizures during the night, Or nocturnal tc's. They are not lon genough to even use rescue meds, but long enough and plentiful enough, that I once again drag him into our bed late at night, as to get a better nights rest. As opposed to running down to his room, when the monitor emits even the faintest of sounds.

Please pray that these seizures stay hidden at night and that this is not the sign of the damn beast trying to rob our house again.

Be content with what you have, for God has said, "Never
will I leave you; never will I forsake you." So say with
confidence, "The Lord is my helper; I will not be afraid."

- Hebrews 13:5,6

a week late- oops

2009-11-08T18:27:00.006-06:00

Geez, I notice the trend on all the blogs recently....I promise to get better about keeping up! I must do it. Life is just whizzing by and you're missing too many great things!

Lets go back a week and let me introduce you to Sir Jake and Lady Addison!

Halloween, as always, was an awesome adventure! The kids, and Matt and I, had a fabulous time!
So completely different from last year.
Last year we did have a great time, don't get me wrong, however circumstances were completely different.
Last year at this time Jake was having multiple seizures a day. He was drunk on drugs, and needless to say the anxiety level was quite high! Jake cruised the streets last Halloween in a stroller. When we allowed him to get out, one of us was right there either holding him, or close enough to him to catch him when he fell. We worried about drops, about crowds, about excitement, about strobe lights, and mostly about him getting over tired.

Although, there was a little anxiety this year, in regards to his stability. Halloween 2009 was much more relaxing than the year past.

We headed out quite early to a street a couple blocks away that is notorious for their extreme decor. The area is riddled with police officers controlling traffic and crowds, kids running to and fro, and ghosts and ghouls a plenty.

Jake was so enamored by the the look

of everything he wouldn't even carry his own treat bag. I overheard once even telling a candy giver, "No Thank You!"
The kid was so excited to be able to run without too many restrictions he could care less about the candy.

He slayed dragons.

and even fought Kings.

My heart fluttered as I watched him run, laugh, sing and play! My little man has come so far and I am so proud of him!

We had an awesome Halloween 2009!

Every day I look at something different around the house that "takes me back." Whether its the overflowing bowl in the cupboard with the numerous failed drugs that only made my son sicker, or the calendar noting the seizures and the timeline to wean on and off a new drug.

Many times it is his pull ups that he still loves to wear. I can't believe my 4 year old went back to diapers after not wearing them for so long.

The highchairs that kept him confined to his seat to eat so he wouldn't fall over and the baby monitor that sits on my bed side table, so I will be able to hear even the faintest sound.

Our little man has come so far! I am so proud of him! Many days I can't believe where we have been and I can only imagine where we will go. I can only pray that we Will never go back to where we were before!

"God moves in a mysterious way
His wonders to perform;
He plants his footsteps in the sea,
And rides upon the storm."

God Bless~ Christine

"I am not brave today"

2009-10-28T11:30:00.008-05:00

Most of you know that Jake is one brave boy! Much braver than I could ever be. The kid adores shots, getting blood drawn, and getting challenged.

One night during our vacation we visited an awesome little community, Baytown Wharf. It was so fun and family friendly! As we walked into the central portion of the town, Jake noticed people flying overhead, across a small lake on a zip line.

he immediately declared to us,he too was going to fly across the sky, like the others he saw. There was no stopping him! he ran to the tower and started to climb it before I could even pay to witness my kid fly above a lake.

I have to admit seeing the tower we had to climb, sent my stomach fluttering! The young men in charge of my sons fate, kept reassuring me that Jake could climb the long, spiral staircase on his own. Jake still has a hard time walking on his own, much less climbing, a 6 story, metal spiral staircase.

So I made the long voyage with him It took about two steps for me to realize that there is no way this kid is coordinated enough to make it all the way to the top. So me, wearing tall wedges and a dress, pick the child up and lug him up the staircase, all while Addison tugs at me and cries incessantly that Jake should not do this because, she is afraid! Somehow we finally made it to the top an d I tell the man that I can't walk him out because I too, am frightened of the great distance below.

So Jake turns to me with the biggest grin ever and is led to his plank!

He walks all the way to the end.

stares out for a second.

Gives me a thumbs up.

Looks like he is about to go.....

then turns and declares matter of factly...."I am not brave today!"

In my mind he is ALWAYS brave, He is my hero!
Let me tell you how relieved I was to hear those words! I was not prepared to watch him zip across a lake!

He then opted to do "virtual bungee." he LOVED it to say the least! he kept crying "Higher, higher!" The attendee was belly laughing watching this little boy, wanting to touch the sky!
>

Addi had a great time too. However seeing how high Jake was willing to go, terrified her, so her feet barely left the trampoline. That's my girl!:-)

Next we found a great little spot to watch the sunset.

Finally, it was time for dinner!

We had a great time at Baytowne Wharf! It will definitely bee a "must see" adventure next time we have the opportunity to get back to "The Beach!"

"How fine has the day been! how bright was the sun, How lovely and joyful the course that he run! Though he rose in a mist when his race he begun, And there followed some droppings of rain: But now the fair traveller's come to the west, His rays are all gold, and his beauties are best; He paints the skies gay as he sinks to his rest, And foretells a bright rising again."

God Bless~Christine

Surf's up!

2009-10-21T10:37:00.011-05:00

Wowzers! It has been a long time since I have blogged. Although I have many things to share about our awesome trip to Florida, today's post is going to be mostly pictures documenting the wonderful experience. Our life has been crazy busy lately, so I rarely find time to get on the computer for "fun" now days.

Our week in Florida was over way too quickly and we are constantly talking about the good times we had and the thought of our next trip.

The kids and I got up every morning, while Matt fished, and had breakfast and then went for a jog. We would usually stop along the way to search for some sea shells, do a little shopping, or simply walk the beach.

We then headed back to the house and grabbed the rented bike! We then would do the same thing, just with a different mode of transportation.

Days were spent basking in the glorious sun and waves of the amazing ocean. Playing football, riding waves, or simply sitting

The rats learned to boogie board and we could barely get them to come up for air long enough to feed them.

After long mornings at the beach, sometimes the sun and the waves were a bit too much, so a afternoon siesta was needed.

Needless to say we had a blast! I will share more about the greatness of the vacation, the next time I am able to find a couple minutes. I don't want to ruin in all at once!:-)

"We rest here while we can, but we hear the ocean calling in our dreams, And we know by the morning, the wind will fill our sails to test the seams, The calm is on the water and part of us would linger by the shore, For ships are safe in harbor, but t”

God Bless~ Christine

WISH 100- Ink Party

2009-10-11T19:51:00.010-05:00

Last Friday before we headed for the beach, we attended the Make a Wish event, WISH 100.

It is a fundraiser to raise money to send kids on their wish. The benefit kicks off with the Ink Party. This is a time of dinner and fun, meeting wish kids, meeting sponsors, eating, drinking and having basically having a good time . The best part? It is called the ink party for a specific reason. the wish kids get to "ink" their their team's legs for the bike ride the following day!

Ink their legs with Sharpies! Jake and Addison had a blast being able to actually write on something besides paper.

Jake still doesn't believe it in this picture. he is asking the victim, if it is really ok!

However, he soon got the hang of it and could not be stopped!Here is Addison getting in on the fun. This picture is Jake's team captain's leg in the beginning stages.Jake's team actaully was the top money raiser! He got to go up on stage while they were acknowledged for their hard work, raising so much money for such a great cause! He, of course, thought he was a rock star! He hammed it up and certainly won the hearts of the crowd. I am surprised I was able to even get a shot of this touching moment, as I couldn't stop wiping the tears away. How did we get here? To qualify for a wish? never in my wildest dreams, or worst nightmares rather, did I ever think this would "happen to us." However, we are here and doing soo much better than we have been. I pray that this good streak continues! Jake is still a bit toxic, as his Depokote levels are still on the high side. Therefore, I have so much fear in lowering the medicine again. I do love the fact he is a bit less clumsy and seems to be able to think clearer, after lowering it the last two times. Jake's heart was stolen by these two lovely ladies! He is certainly smitten by them. Not only because they are as pretty as they are, but I think he may know they are the ones helping him make his wish come true!;) Christine and Kristen are Jake's volunteers for Make a Wish. He met with them back in July to tell them his special wish of surfing like Scooby Doo and swimming with dolphins. He has yet to quit talking about them!

Jake was able to meet other wish kids. This is the group that attended the event. Notice Jake is the only one wearing his t-shirt? He wants to wear it EVERYDAY! He loves it and calls it his special wish shirt!
Unfortunately, we were unable to make it to the actual ride and after party the next day, as we left super early the next day to start our beach vacation.

It is so amazing to me, the efforts people will give to make another happy.

We are so blessed to have a team sponsor Jake's wish.

So blessed to meet the kind hearted people that give their time to make Jake's wish special.

And so blessed, that the Beast has decided to back off , at least for now.

Jake is a fighter and is hopefully kicking his butt so hard that he won't want to show his stinkin' face again!

"For today and it's blessings, I owe the world an attitude of gratitude."

God Bless~ Christine

VOTE for Jake!!! please go to http://family.go.com/gapcastingcall/?cmp=OTC-Gap-Gapcom-HPBanner-Entry

search for my kiddos using the name peters528. You can vote once a day!

We are back!

2009-10-03T21:52:00.004-05:00

We are here in Santa Rosa beach!

we are tired, cranky, and ready for bed!

But we are here and so far seizure free!!

last year when we entered the house , Jake had a tc! It was a long one. One probably requiring Diastat.

so far, however we have had none and we are just loving life!

we walked in,changed, daddy got his fishing poles ready for tomorrow, and we left for Stinkys! After stinkys we sat at the beach and watched the tide roll in, swam, laughed, and looked for crabs. In 1 hour our lives were transformed!

the kids have been bribed stinkeys since last year. Stinkys and red bar are two of our favorite places to visit while here. so , check, we got our Stinky's fix, now on to the Red Bar!
http://www.stinkysfishcamp.com/stinkysfishcamp/

I am off to bed, but you can bet that more pictures and updates will come daily. Especially the much anticipated Make a wish "ink party" and the first moments seeing the water pictures.

(I am aware tehse are awful pictures. I have yet to break out the decent camera)

I can't wait to tell you guys how much fun we are having.
and more importantly how therapeutic this is for us.

Watching or troubles go to the sea.

"The sea possess a power over everyones moods that has an effect of a will. The sea can hypnotize."

God Bless~ Christine

OINK, OINK

2009-09-24T21:23:00.005-05:00

Saturday night at the Pegasus Ball for Autism, the Arkansas football game was on. I was forced to "call the hogs" for the first time ever.....well, apparently I do a pretty mean PIGSOOIE because it worked!

I called the Hogs alright.

The pig has entered the house! We are now living with the swine and the BEAST!
The Peters' have been quite busy lately. Between doctors appts., a week full of in services, a sick little girl, and a boy that had a long weekend of seizures.

God is good, and a break is in the near future.

Next week we will head back to beloved Florida for a week away "from it all!"

The beast, the swine, and others may follow, but we will all be together, at our most favorite place on earth!

I have some pictures of the photo shoot, for the make a wish national campaign and some videos as well. Jake was a ROCKSTAR! He had way more patience than me, and really played the part , as the actor! I am soo proud of him!

Stay tuned for the takes of the shoot!

We, Brandy and I, are looking to change the blog up a bit, if yo have any suggestions, please let s know!

God Bless~ Christine

where do we begin?

2009-09-20T20:07:00.006-05:00

Had an awesome week or so since the last blog update. Stinks I am not blogging more, but work is work, and in between work and the rats, it's all I can do to remember to breath, much less blog.

I will start with the freshest tears on my mind.

We had the amazing opportunity to go to the Roundup for Autism last night. What a spectacular event. What an amazing cause!!! Silent auction, good food ,good wine, good friends, good date night night, and amazing emotions!

I sat there and cried at the event. Cried? I am unsure why. But yes, cried. I assume, because I was dumbfounded by the event and the awareness that an event like this can lead to.

No Jake is not autistic, or on the spectrum, but hearing, watching and respecting the cause, did bring tears.

I have said it before and will continue to say it...Jake "was given this " for some reason. I am still unsure why and what our calling truly is, but i know we have some sort of part in God's plan for this damn Doose syndrome!

Pictures from the awesome event! Thanks Anna and Joanna!

Hmmmm, how do I even start this portion?!

We have been going to Oktoberfest in Addison since our Addison was in my belly and even before that. However, as she walked the sidewalks of Addison today and saw her name etched in the concrete, she was amazed! We told her that the town was named after her! So we went to our annual, beer drinking, fat eating, money spending event. This time with both kiddos old enough and seizure free enough, to recognize the true fun of it all.

Long story short...we played, drank, and ate some brats and pretzels.

We made sure to hydrate the rats.

They rode some rides.(I have edited this a million times, but dont know why it is not showing.)

and they danced the polka.

We had the twerps in the double stroller, on grass, or seated at an event table all day. We finally made our way to the face painter, as Addison BEGS to get her face painted. I swipe the rats out of the stroller to pick their poison, that is, the ink that will transform their cheeks.

Just as I do this, I hear the most God awful THUD! Like a sledge hammer hitting concrete! I am sick! The pit of my stomach still aches from that sound. I assume I was getting tickets or money to pay for the monstrosity that will take over my kids faces. I didn't actually see him hit the ground, but was right beside him.

He lay there, I throw my beer at someone, or something, and grab little Jake. As I scoop him up , I somehow grab the magnet to swipe over his vns on his chest. He continues to convulse in my arms.

I hear people screaming, talking, "ahhing", and see them staring.

I cry.

I really don't know what happened exactly after that, except, Jake I were sitting on an air conditioned floor, out of the heat, surrounded by "onlookers" and EMS.

I remember trying to assure people he is fine! He has epilepsy! Get over it and quit staring! Quit following! and quit freaking out!!

I continue to cry!

At this point I am sooo not concerned about the effing seizure, but about the hit his head took.

His head, thankfully is NOT bleeding, but has a knot and blood blisters or "blood dots" all over ,the size of a golf ball.

I cry.

Not sure why I cry and cried...not really sure. Maybe I was embarrassed? maybe I am pmsing? maybe I am sad he has not had these "day time " seizures in a while? I don't know, but I cried and I continue to cry as I type.

Lord please don't let this "break through seizure" be a sign or what we may see in the near future.

Do not fear , neither let your heart lose courage; our christ invisible helps you with a hidden hand; He tests you in order to give you HIS grace. As much as the earth is cultivated; and as much as the farmer pushes his plow, so much more will the world give fruit in his time. Even so does the great farmer, God, do with our souls. He allows trials, afflictions, suffering and distress to come to us and enter deeply into our heart, and many times we find ourselves at an impass, not knowing how to handle that or this trial, and we suffer and feel great pain. But for those who love God, He works together with them , that these things turn out for the good.

God Bless~ Christine

big news and showers!

2009-09-09T20:47:00.003-05:00

It has been a awesomly long week. Ending in Matt and both getting an upper respitory infection and sinus infections. Good Times!

Better us than the twerps, though!

We had a couple of big phone calls this week.

The first being:

Jake has a sponsor for his wish!

The North Texas Chapter is hosting Wish 100. This is a bicycle event here in Plano that we had planned on attending, because Jake is a " wish kid."

A couple days ago, however, I received a call at work stating that UBS raised $6,000 or more and is sponsoring Jake and his wish!

Wow! Words don't explain the way I am feeling.

Because Jake has a sponsor, we now were invited to join in on the "Ink Party." This is a pre-race party where the wish kids get to "decorate" their team's legs!

Oh the tornado will love being able to wreck some havoc on others ..."legally!"
,
Go here to check out the event details:
wish100.org

I also received a call that Make a Wish wanted Jake to do a photo shoot!

I sent them some of our pictures from the Dallas Cowboy game and they apparently thought Jake was cute, who wouldn't?!:-)

Therefore, they asked if I would be willing to get him involved in a photo shoot for the National campaign.

Hello?! Of course we would!

We went last night to the photographers casting call. She took a few pictures of Jake and now we wait to see if he "made the cut."

Such amazing opportunities!

I HATE the fact that he can even qualify to receive a wish, but since he can I am glad we are able to have the opportunity to touch others lives.

In Jake news:

His Depokote levels turned out high again. Therefore,we had to cut back on, yet, another dose of the medicine. As much as I hate side effects, seizures pretty much suck and scare the crap out of me.

Last night was his first night without his afternoon dose and it didn't go to well.

Jake was up all night long.

Not only was he up, I suspect some or several seizures.

I woke to "the sound" on the monitor. I ran in after waiting awhile, as I was sleeping and kind of forgot the
"sound" only to find him very postitcal. He was "clucking" like a or clicking his tongue for several minutes as I lay with him. This tells me that the seizure was a lot longer than the ones we have been seeing that are under 20 seconds. I suspect this one was at least 1-2 minutes. Hopefully, that was all it was. I am riddled with guilt for not running in there sooner and not knowing how long "it" really was.

I then picked him up at school, lifted him up and felt major arm twitching. This certainly scares me sooo much!! I hope we don't regress and that this is all just with drawl symptoms, as I have read to expect much like a heroin addict or alcoholic coming down from their high.

In good Jake news.....It is UNBELIEVABLE to me that he now, once again, takes showers by himself!

He was doing this before the beast entered our house,but has not in over a year.

Jake now takes showers by himself.

God Bless~ Christine

Better than swimming...

2009-09-01T20:00:00.010-05:00

Addison stated "This is the best day of my life, better than swimming," after we were able to attend a Dallas Cowboy game, compliments of Make a Wish!

While at school Friday, I got a call from Make a Wish. My heart stopped! Was this the wish? Jake had wished to go surfing back in July, but nothing has been set in stone about the trip. On the other side of the line was a coordinator from Make a Wish, not necessarily granting Jake "his wish", but inviting us to an awesome outing!

They had tickets to the Dallas Cowboy's game at the brand new stadium! I couldn't pass them up, even knowing Matt had already made plans during game time.

The kids and I would go and ask my parents to join us. needless to say, it was an awesome experience! The kids have grown up routing for Da'Boys. They donned their Romo jerseys and we headed out! The stadium is ridiculously cool. It was no stadium, in my opinion, but a 5 star hotel. There were "napkins" with the Dallas Cowboy star in the restroom, as opposed to a blower or paper towels!

The kids had hot dogs, nachos, cotton candy, and bought hats as souvenirs! It was GREAT fun!

I was very worried about the game starting at 7:00, Jake's bedtime, and what that change in sleep pattern may do for seizures.

So as expected, Jake asked to go home at halftime, I am surprised he made it that long.

We were driving maybe 20 minutes when he sacked out.
We were driving about 40 when the seizure hit.
It did scare me, as I had not seen one like that in quite a while, but bless my parents, they were speechless in fright.

We soon got home and I put Jake in bed with me. He had been sleeping in his own bed, but I was a little worried "I might miss something" if he wasn't with me.

As I lay next to him feeling his breath on my cheek, I prayed.

I prayed harder than usual. I prayed for healing, for strength, and for understanding, if he may "relapse."

I lay there and prayed.

Eventually I fell asleep, but was awakened by Jake.
His face was over me.
he looked at me and said "Mommy don't worry the angels are here. They're taking care of me."

I asked where Jake, where Jake" show me!"
He pointed and said everywhere, especially my head.

I still get chills recalling this event. I still don't know if I was dreaming. Al lI know is I feel peace again.

The following morning the kids and I went on our walk.
What did we see?
The Hawk!
Addison pointed him out as he flew in the street next to us. She said, " Mommy is that Jake's hawk?"

I said, It is indeed, it is indeed.

Have I not commanded you? be stroong and courageous. Do not be terrified, do not be discouraged, for the LORD your God will be with youwherever you go.

Joshua 1:19

God Bless~ Christine

( for the hawk story go to Sept 27, 2008)

School days!

2009-08-30T19:43:00.004-05:00

Wow! What a fun, exciting and exhausting week. I can't believe it has been a week since the last post. I have many things to "blog" about, however will save tonight for the "back to school post."

The kids LOVE school!

Don't get me wrong, there were days of many tears, both from the kids and me. Many long meetings, including ARD's, planning and informing about sweet Jake, and of course many a penny spent on all the back to school supplies, gear, and extras mommy just knew they "couldn't survive without!"

Unfortunately, I have been having huge camera problems, so these are the best pictures I could come up with to capture the all important milestone, that is "the first day of school."

I can't believe, and am sooooooo grateful, that I was able to be there with my little kindergartner, as she walked through the halls of her first "real school."

I can't believe, and am so grateful that Jake was able to be there with us, and also walk into his own classroom.

The keyword here being WALK!

It was just this last May, when he was not "allowed" to walk. Allowed, because, as soon as I would let his precious feet hit the ground, his head would soon follow in a seizure. Si I didn't let him walk, infear that we would land ourselves back in the er for more stitches, as we have done so many times before in the past year.

Jake walked, skipped, ran into his brand new school!

We are blessed!

Dear Lord, it's such a hectic day
With little time to stop and pray
For life's been anything but calm
Since You called on me to be a mom
Running errands, matching socks
Building dreams with building blocks
Cooking, cleaning, and finding shoes
And other stuff that children lose
Gitting lids on bottled bugs
Wiping tears and giving hugs
A stack of last week's mail to read
So where's the quiet time I need?
Yet when I steal a minute, Lord
Just at the sink or ironing board
To ask the blessings of Your grace
I seen then, in my small one's face
That you have blessed me
All the while
And I stop to kiss
that precious smile

God Bless~ Christine

summers over?

2009-08-23T21:05:00.006-05:00

Tomorrow starts the first day of school for my babies. The first day of kindergarten for our dear Addison Mary, and the first day of full day preschool for little Jake, since the seizures started.

We had tons of fun this summer. We went to the Dallas museum of Science and natural history, soccer camp, swam many a day, hit the library, visited spray parks, and went on many walks including picnics. The following are just some of the examples we had an awesome summer!

We had so much fun! I will definitely miss my sweet angels. I would probably rather stay at home with them all year, HOWEVER, being able to go back to work this year, knowing where we were at last year is an amazing blessing! I pray that we can keep up this "awesome run" that we have had!

I am blessed and thankful for each day!

"Some people are always grumbling that roses have thorns; I am thankful that thorns have roses!"

God Bless~ Christine

Poster boy?

2009-08-20T19:39:00.005-05:00

Back in April, when Jake was going through a very difficult time and seizing 100-200 times a day, we had to stay in the hospital for a week and 1/2.

It started out as simply an overnight stay so I thought.

A day grew into 3 more days, which turned into a week, which turned into more days.

I will not complain, as that week, seemed to "fix" Jake.

"Fix," totally, no.

But "fix" from seizing more than he wasn't, YES!!!

While we were there, I tried to keep Jake busy, so he wouldn't go crazy and most importantly so I , nor the nurses, would murder him.

10 days in a hospital with a 4 year old on drugs is not pleasant.

Jake and I took many wagon rides round the hospital, to different floors, the lobby and the prayer garden.

On one trip, Jake was asked to be allowed to be photographed. I obliged, as it is the very least we could do for the compassion, kindness, warmth, and knowledge Cook Children's has given us.

Last week while at our regular scheduled appt., Dr. Hernandez informed me that the Marketing team was outside and wanted to do a video and more pictures with Jake!

I am unsure, how that really went down, but I like to say that they knew Jake was there and wanted him for the pictures. So they took a video of Jake getting a "fake" immunization. They also took several still photos as well.

Ironically, The always active and never sit still boy, was dumbfounded. He did not say a word, which was alright as it will be recorded over, but appeared to be almost shy!

Turns out, the child was disappointed, yes disappointed and upset, that he received a fake shot and not the real deal!

The kid LOVES shots!

The other day I told Jake he had to go get blood dawn and he shot the BIGGEST smile and exclaimed "DaDAY?!" (today) I said yes, if he went to bed and napped real good! he immediately went to sleep, and the first thing he said upon waking was, "Can we go?!"

The lab techs, didn't believe me that he would be ok getting blood drawn. Therefore, they brought in the masses to try and hold him down.

The child extended his arm, asked to tie the rubber band to make the veins appear, and even "slapped" at his arm to make the veins appear.

They inserted the needle to draw the blood and the kid laughed! The techs were amazed! or maybe even appalled!:-)

Here are some photos from the first marketing event!

" in the end it's not the years in your life that count, but the life you put into those years."

Abraham Lincoln

God Bless~ Christine

Hope!

2009-08-16T20:52:00.004-05:00

So after all the bad.

Not saying that it instantly got better, and I did leave out many of the daily details.

For instance, having to hold Jake up and spoon feed him while we have family dinner, propping him up with pillows so he could sit to watch tv., translating my 4 year olds language to others, even family, carrying burp clothes around because he drools so much and he needed to be wiped as much as a baby, and even transitioning from being potty trained to wearing diapers, to name a few. We are now at a much better place.

A better place thanks to Dr. Hernandez and the other absolutely wonderful and caring people at Cooks Children's.

We still are dealing with many issues.

For example Jake's hair is falling out. The boy that was almost known for his thick white locks, is losing his hair.

He is very impulsive, to say the least. At any time, any object may be hurled at our head.

He stills stumbles around, and his speech is still slurred.

I have a very difficult time noticing it, as I think we have come soooo far. However, when we go to get an eval. at Our Children's House, an awesome organization. They tell me our son not only qualifies for occupational therapy, but also speech therapy and physical therapy.

When did this happen? When did the tables get turned?!

I am the one usually conducting the ARD meetings. Now I am on the other side of the table and instead of me suggesting how I can help other peoples children. They are telling me what they can do for my child!

It is strange. It is hard. And is is even heartbreaking. Let's face it, who thinks they'll ever have a "special ed" child? However, it has made our family so strong, so forgiving, and so open.

For this I am thankful.

Jake is still having seizures. Thankfully, not atonic, or drop seizures, and not myoclonic seizures.
These seizures greatly impacted his quality of day to day life.

But, he is still having the tc's. The seizures I was TERRIFIED of, to say the least. The seizures that I made Matt stay home with me every morning until 10 or 11, because I was petrified of him having them with me. I did not want to stick medicine up his butt, I did not want to see his eyes roll back in his head, and I did not want to pray to God from them to stop before I had to call 911.

I left that to Matt.

Jake is having tc's. I don't know exactly how frequently, as we have been trying to give him space, as well as live a normal married life sleeping in our own bed without little feet and hands.

We still use the monitor, but I simply can't stay awake all night, so I may be missing something.

The past several days, though,Jake has been having a couple tc's a morning.

The doctor. Not the nurse, but the doctor , called Friday evening, as we were on the way out to a Hibachi grill with Matt's parents.

He asked me how things were going? I immediately said the same thing back to him.

How often does the neurologist call you personally? NOT OFTEN!! I was taken back and assumed and was certain he was going to tell me something I did not want to hear and did not have the strength to handle. He did not tell me all this bad news. It was not great news, but not as awful as I expected when I sat myself on the floor and braced myself against the kitchen counter.

He informed me Jake's "levels" were pretty high. His Depokote level should be 50-100., and Jake's were 143. He suggested that maybe this is why I am still witnessing incoordination in Jake and even maybe why his hair is falling out.

The solution? Drop some meds. As scary as this is, I am ready for it. I hate the side effects almost as much as I hate the seizures.

I can deal with the tc's in bed, but I would hate for the drops to comeback. Please pray for this change to be a great one for us.

We are two days going on our decreased med, and so far all is great.

I pray that this stays the same, as school starts tomorrow

Handsome boy, even with black teeth from all the falls.

He can eat by himself, we didn't know if we would ever see that again!

He can sit by himself! (he usually sits with one hand propped behind him to stablilize himself so he doesn't fall.

To keep a lamp burning , we have to keep putting oil in it.

Mother Teresa

God Bless~ Christine

You're Fired!!

2009-08-11T08:14:00.008-05:00

I am going to try and update as best as I can and as quickly as I can where we were last year at this time.

It is about to get hairy, as the school year is getting underway. Besides me resuming my responsibilities as a special eduction teacher, Addison will be starting Kindergarten and Jake will be starting prek full time as well.

August 5th, 2008

We had Jake transferred to Children's Medical in Dallas.

Jake loved the atmosphere much more and was much more willing to cooperate with the nurses and doctors in this kid friendly atmosphere.

Jake LOVED the fish tank

The first smile I saw in over a week...needless to say I was a blubbering mess

They ran more tests and promised "tomorrow" we would go home.

However, tomorrow kept turning into another day, as his seizure types kept changing and/or increasing.

Finally, after 4 or 5 days taking up residence in downtown Dallas we got the ok to leave, but not without telling us:

"Jake's a very complicated case."

This did not make me feel much better, when taking this new child home with no nurses, iv's, doctors, and emergency care always on hand.

But, they did give us Diastat, the emergency medicine. I did feel MUCH better armed with this little weapon.

Right before we were walking out the door, Jake starts throwing up.

The nurse came in and advised us to wait a couple hours, let the doc check him out again and then we can go.

On the way home, Jake throws up in the car 2-3 more times.

We get him inside , cleaned up, give him his meds and the boy starts losing it again. He can't hold anything down, most importantly, he can't hold his medicine down.

So, Matt and I load him back up in the car and head to the nearest ER. Apparently Jake had picked up a virus at Children's.

The doc at the er gave Jake anti nausea medicine and another iv of his Depokote, so his little body can actually absorb it and we may be able to get some sleep.

( jakes littlehand says it all, in the er hooked up to the iv)
The next morning, we wake up tool around for a little, and Jake needs to go potty. I take him potty, not yet knowing what the heck a "drop seizure" was.

As I watch him going pee-pee, I witness him lose all muscle tone.

He falls straight down, chin hitting the edge of the commode and his little head flinging backward onto the tile floor.

Yep, here goes another ER run.

8 stitches and a cscan later we are able to go home.

Little did we know this would be the first of 12 sets of stitches in the same place in the next year.
FIRED!

LOng story short...hopefully.

Our pediatrician is adamant that we need to get back in with our neurologist a follow up appt.

Our peds. office even sets up the appt.

The day of the much anticipated nuero visit, I get a call 3 hours before.

They tell me I can't come in today.

We set up another appt. for the following day, however at their other location 1 hour away.

I load Jake up, who at this time is having HORRIBLE side effects of the new meds taking over his body, in Dallas rush hour traffic and head out.

We get to the appt. and are surprised to be the only ones in the office.

After waiting nearly a hour, our nuero walks in.

The first question she asks is:

"Why are you here?"

Dumbfounded, I respond that, as if she needed to be reminded, that our pediatrician recommended, we see her right away, as Jake is still seizing uncontrollably and it is pretty scary, and it may make us feel better, if we could control them.

She then informs me, she can't see us anymore.

I am absolutely dumbfounded!

I muddle up, trying to fight back, tears, rage and that growing lump on my throat, Why?

She tells me that there are "too many people involved!"

I tell her " too many people? this is my sons brain, his life!"

She informs me she knows and that's why she can't see us, BUT she will see us for 30 more days and order blood tests for tomorrow because Jake is still having so many seizures we need to see if there is room to increase his meds.

I walk out, feeling like a lost puppy, carrying home my dying cub, with now hope in the world.

I cried, bawled, and screamed the whole hour home.

However, I was a little encouraged that she would be our doc for a couple more days so we can get these meds figured out.

I drag the kids out of bed early, early the next morning, so we can be the first people in line for the blood work.

We were not the first, or even close to it.

However the other patients saw how much Jake was seizing, and it probably freaked the out a bit, so they us go ahead of them

I was supposed to hear back by 12:00 about the results, so I knew if I could Jake more of his afternoon dose or not.

I waited, and waited, however the call never came.

I called and left message after message to the neurologist office and never ever heard from them.

So here I am , with a seizing boy, no neurologist, no new meds. and no where to go.

I tought I would never make it past this point in my life, however through the support of family and friends and the great Lord above we are here today. This is an example of the unwavering support that has been shown to us during this very trying time! A letter from a friend:

I just wanted to take the time to point out to you and Matt how far you have come. It is soon to be the anniversary of the beast's appearance...that's 365 days that you've made it through. 365 breakfast's, lunch's and dinner's... 8,766 hours...52 weekends. Amazing and remarkable. You have still eaten ice cream, you have fished, swam, rode bikes, got up on ski's, tubed, strolled for Epilepsy, raised money for charity, gone to the beach, hung out with friends, birthday parties, girl's nights and have shown me and countless others... what Epilepsy is. We are all more aware. We are smarter. We are passionate and we all realize the tremendous need for more research and awareness. It is contagious, this desire we all have... to get Jake better and all of those that suffer.

You should be proud of your marriage, proud of your families and proud of yourselves, for I bet you none of you thought you were going to make it through ONE day. Now you can say you've almost knocked out 365 of them.

I love you both and your sweet family and I am glad that I am on the "list" of friends you turn to when you need something. Don't ever cross me off...etch it in stone, if you can.
Love, Brandy

God Bless~ Christine