Miralax, infomercials, blankies

My ,oh so productive, morning of drinking coffee, googling, and breaking up fights was interrupted bright and early.

I get a phone call.

Through the static all I can hear is someone mumble:

"Miralax."

I question the caller:

"what?"

caller:

"Miralax"

I respond:

"not today,I am actually feeling pretty good."

I pause and think about it. Oh this is Lisa, my sister in law. I soon decipher, Miralax is actually "mailbox."

See she watched Jake yesterday, so I could go to a funeral of a student mine.

Diastat is my copilot. It goes with me everywhere. I took it to her house yesterday and at about 3:00am I broke out in a sweat, realizing, I had no diastat in the house. So from this point on I was certain Jake was gong to have a tc and I would have no way to save him.

Her call this morning was to tell me that the diastat would be in her mailbox, so I could go get it.
She was not a random caller reminding me to take my Miralax.
Phew, because that would have been awkward.

Infomercials

The other day, Addison sat on the family room watching some cartoons. I walk in to sit by her and states, in an oh so definite manner

" You need that so you can finally get this house clean."

"What?" She points to the tv and proceeds to tell me why I indeed need the steam shark, or some similar gadget.

I had forgotten about that incident, until last night and again this morning.

Last night, Addi is again watching the tube. She calls me in to catch a glimpse of the "greatest thing that I really need!"

I am certain, now that after the cleaning remark she is going to suggest some cellulite thigh cream. See when I am wearing shorts she shakes my thighs or smacks my booty and tells me "Momma, you're getting old." I asked "why do you say that?" She matter of factly states "because your butt and legs are jiggly and have holes."

Nothing like a 5 year old to boost your self confidence.

To my surprise, she was not telling me I needed cellulite cream, she was telling me I needed the Ultimate Snuggle Blanket. This is the blanket that your basically get inside of, but you have still have mobility to do things such as :

answer the phone

read

pet the dog

Apparently Addison thinks it is best suited for me in a different way.

She tells me" If you get that you can still clean and be warm."

So not only am I getting old and fat, but my house is also a mess.

She apparently saw the look of anguish on my face because she then tells me, "It's better than a blanket, because it won't slip off." "That's why you need it. It's also for parents, brothersand sisters."

This morning, as I am accomplishing much of nothing on the computer, with Jake on my lap, he starts saying "Yummmmy, ummmm, that looks good."

I turn to see what he is watching and it is the one and only Big City Slider. Some device that makes "food better than mine." (as Jake informed me)

Infomercials have quickly become dreaded around this house. I am terrified to find out what other flaw in my life the kids can point out!

The Blankie

Just a tad bit of randomness, that really confuses, the personal at the many hospitals, clinics, and EMTS.

See this summer Jake's cousin, Chad, left his blankie over here. this is blankie is just like the 4-5 blankies Jake has, except it has Chad monogrammed in the corner.

Jake soon took upon himself to claim this blankie as his own. Going so faras to hide the "Chad blankie" when Chad was visiting us, so Chad would not take it back.

We made the mistake the first hospital stay, by not bringing "Chad's blankie." Jake cried, and cried and cried for Chad's blankie. Matt finally went home late one night to fetch the blankie. Jake got t in his hands and instantly wen tto sleep.

The next trip we were bright enough to bring the coveted blankie, however it caused much confusion. See as nurses and dr.s walk in to examine Jake they quickly would apologize, "that they have the wrong room." All they could see was a little boy, with iv's, that was supposed to be Jake, covered in a blue blanket bearing the name "Chad." Obviously they had the wrong room.

Now, it is Jake's obsession to find the monogrammed name and rub it on his face.

Many nights, very late, we will hear Jake stir,and then scream out, in such an awful whining voice "I can't find Chad's name." One of us, usually me, will go in Jake's room, to find him, turning the blankie to every corner looking for the name.

God Bless this "Chad's blankie" because it has surely saved us many tears, as we now keep it very close by, especially on trips to the er.

I am concerned, though, as this blankie has been through so much. It has been thrown up on, peed on, bleed on numerous times, and "Chad's" monogrammed name is now becoming unraveled.

I can't stomach the thought of what is going to happen when this blankie dies. It has been through so much. I guess I could always take one of Jake's identical blankie and monogram Chad's name on it!?

Laughter rises out of tragedy, when you need it the most, and rewards you for your courage.

GodBless~Christine

Addison's Birthday party...take I

Addi's party from Saturday night.

All she asked for was for her cousins, aunts, and uncles to be there...well, and "her Mimi and Papa."

The party, and the season, have really snuck up on me, so I realized like 2 days before the big bash, "I have done nothing." By this I mean literally nothing.

No theme, No cake, No presents, I don't even know if invited people yet. However, the ole' saying "If you build it, they will come," rang in my ears, so I set forth on this birthday party mission.

I start this adventure by asking Addison what kind of cake she wants. She states, "Hello Kitty," as we threw her a hello kitty bash a couple years ago. I try to convince her to go with another theme. She suggests soccer. Cool, soccer is good and it's different than the typical princess theme most 5 year olds want. Then she adds the dreaded words that are still echoing in my ears...."and I want you to make the cake. "I don't want t from the store."

So here I am 2 days before the party, with nothing, including not a clue on how to make a soccer cake.

I then remember the garage sale pan!

A month or two ago my mom bought a Wilton ball pan at a garage sale.

Could I really pull it off?! A round cake? I am terrified!
I set out with a will...b/c where there is a will there is a way, right? At least, that's what is getting me through this horrid process.

I make lists for Matt, hit the party store and sit down to try and conquer "The Cake!"

Now it is by no means perfect, but for my lack of cake decorating skills, I was pleased with my self. Pleased, even if Matt kept walking by it and laughing!

We sang, ate, laughed, cried, shared strores from ole', and dreamed about stories to come.

The others can take Chuck E Cheese, I will stick to our intimate family parties where I can usaully hear my self think, we don't spend a fortune, and I don't have to worry about losing one or both of my children.

Never underestimate the importance of having fun. I’m dying and I’m having fun. And I’m going to keep having fun every day because there’s no other way to play it.

~Randy Pausch

God Bless~ Christine

BIRTHDAYS, seizures, ers, stitches, ear rings, dolls, oh my!

Addi's birthday started with a bang...literally!

I was lying in bed all night watching the darn video monitor, as I "had a feeling."

Finally at about 5:00am, I was planning the day in my head and wishing Jake would make his morning journey to our bed, so I could log a couple hours sleep, as opposed to watching the dreaded, light, buzzing machine that stations it self on my bed side table.

At about 5:45, as Matt was showering, I hear Jake, get up and about to make that trip. I try, like usual to run to him, to carry him to our room, so he won't fall.

This birthday morning, as I turn the corner to the hall, I watch him, bite it, and lay screaming bloody murder.

I hesitate.

I finally, after a couple seconds, gain the confidence to make that, 10 foot journey to where he lays.

I pick him up. Look down...and there lays a puddle of blood.

Happy Birthday Addison. (under my breathe of course)

I lay him on the, soon bloody, counter and peer into his chin, to see bone.

Crap!

I meet Matt as he is getting dressed, and announce, "I have to go."

I get somewhat dressed, and try to stop the bleeding, as Addi gets out of bed and crys..."why, Why does this keep happening?" "I hate when this happens to him."

We load Jake up, after an, what seems, endless, search for my keys and head out.

I head out, straight into the front of Matt's car.

Damn it!

He never parks there, and I should have been looking!

Luckily, nothing, or at least, not much, is wrong with either car, but I still have an awful back ache and neck ache from the jarring.
We sit, and sit some more in the er with 2 black eyes and a huge opening in his chin only to emerge, 21 stitches, and 3 hours later, just in time to hit Addi's birthday party at American Girl.

My mom and Addison relieved Matt so he could go to work and they could get to her 9 :00 am brunch reservations at the store.

They meet us at the hospital with fresh clothes for themselves and Jake, leaving me to hit the doll wonderland, with yesterday's makeup, dirty and bloody clothes, and no bill of confidence!

BUT, this is my precious daugthers, much anticipated 5th birthday!

The day was planned with Aunt Tiffany, cousin Wes and Austin. Brunch with cousins, aunt, Babi and dolls, ear piercing and whatever may transpire.

Breakfast was great and we did meet the 9:00 am reservation. "Sally", the doll, ate, and got her ears pierced.

Aunt Tiffany spoiled Addi too much at the store and we eventually made our way to get Addison's ears pierced.

We get to good ole' Sweet and Sassy" and Addison, goes kind of blank, but still manages to run around, until the "moment!"

She sits on the big pink throne and waits as we analyze the black dots, soon to be holes in her ears. She gets a quivering lip and says "she doesn't want them."

I remember how long she has talked about these ear rings, that I have forbidden for so long, and think about what Jake has been through, and eventually nod at the teens, as if to say "lets do this," putting permanent holes in my daughters ears.

She was fine with the initial piercing, until the "other girl, obviously unexperienced" gets the ear ring gun stuck in Addi's ear.

Geez make all these "pokes" stop!

They finally get the gun lodged in her ear away, however Addison is terrified to even look in the mirror.

I thought this was supposed to be fun?!

The princess finally comes around, as Jake is begging for bed and Addson is now begging to go to Aunt Tiffany's and Uncle Chad's house.

Tiffany, graciously, takes Addi for more fun at Chuck E Cheese, as Jake and I go home for some slumber.

The kids wake and I realize I still need to hit the grocery store for her "family birthday party."

However, grocery store shopping can never be, quick trip easy, can it?

Sally, the doll, has to go along, in her stroller, straight from playing "soccer."

So we head out, Jake in his blue helmet and Addison pushing her stroller.

We got stares, laughs, and questionable glances, but over all what an awesome experience!

Stitches suck, ers suck, tired kids suck, but I have them and they our ours!

They were spoiled by loving family this week, today, and always....what more can I ask for?! I have kids with me, whom are loved by so many!

flowers from Granny and Poppi

Three grand essentials to happiness in this life are something to do, something to love, and something to hope for.



God Bless~ Christine

Needless to say, my long day ended like this:

Merry Christmas!

The season is kicked off by the annual Christmas Pageant.

Waiting patiently in line for Santa.

It snows inside All Aboard, The Polar Express!!

S'Mores!!


Quality time with Poppi!

Brother and Sister.

Making Christmas cookies!



I love my brother!

Sprinkling "reindeer food" on the lawn.

Carefully leaving Santa's cookies

Striking a pose with Santa's cookies

My Motorcycle rocks!

Rock Star!

The gangs all here!

"When we remember a special Christmas, it is not the presents that made it special, but the laughter, the feeling of love, and the togetherness of friends and family that made that Christmas special." Catherine Pulsifer

God Bless~ Christine

O' Holy Night

The kids, my mom and I head out to the annual, Hickman Christmas party. I won't even try to describe, as no one would understand the Christmas monstrosity that are the Hickman parties. It is so amazing, that there are actual tours that run through the house and Wednesday's child has even aired from this house on a local tv station.

Beautiful house, amazing food, never ending drinks, friends that we have not seen in forever, family..what else could any one ask for.

Yada, yada, yada, we know where all this is going don't we?!

Well before I get to the "good stuff," Addison was also planning on her first slumber party this evening! My best friend came in from Houston with her daughters and invited Addi to stay with them at her mom's house. Addison was a little apprehensive, but once she saw Emma, she was FIRED up to say the least. If wanting to strip at the Hickman's party in front of at least 100 people, or talking to bananas, or screaming "zippity doo daa," has any inflection on how excited she was, I think she was just a tad happy to go stay with Emma and Julie, even if Duke didn't make the trip.

The party is a come and go party. I let Matt get a kitchen pass, as much as he wanted to go, I could tell he was worn out from the Peter's Christmas, we just hosted at our house, endless traveling for work, and starting another work week the next day.



So Jake, Addison and my mom stop by for a moment and plan to do "the switch" with Julie, that is leaving my first and only girl for her first sleepover.

As my mom and I are heading out, we take Jake's new helmet off. Jake plays around my mom on the pristine, white ceramic tile. He figures he is bored over there, 10 feet from me, and makes his way to me. I am watching him make that 10-12 foot journey to me...I am talking to Julie's sister about Jake and greater aspirations for all, I watch him, in slow motion, fall face forward into the gorgeous white tile. I look at my mom and she is too watching him, but not moving...this is probably over a 2-3 second time period , but I feel as if it is 10 minutes. I go get Jake, and finally, that awful, gut wrenching, head cracking, sound rings in my ears. The sound that literally made the room stand still. I remember looking around and trying to see if everyone was looking at us, but they weren't, however the noise, that I could barely hear myself think over, was now silent.

I pick up my son and am sooo happy to see NO BLOOD!!!! I hold him, as my mother and Rosie cry. I then start to cry, not for Jake per say, but because of the anguish I saw in their eyes. The hope and the desperation they want for Jake.



Andrea runs and gets an ice pack, I blow her off, as I don't need it. He only has a blood blister. A couple minutes pass as we plan on Addi's big night. I look back at Jakerdoodle and the blood blister now has a friend. A golf ball right in between his eyes. I then start to panic.

I have never seen a welt on the head that big. After much over analyzing and contemplation, Matt and I take Jake to an after hours pediatric care by our ouse. The dr. does a thorough exam and we don't have to go get a cscan, as previously recommended by another pediatric after care clinic.



The kid looks like "Rocky" from Mask, starring Cher, and will surely have 2 black eyes to greet Santa's presents, but he is fine.

It is better to light one candle than to curse the darkness.

God Bless~ Christine

I am unsure if "the crack" and fall was a seizure or not...assuming it wasn't yesterdays count was 1-2, if that.

today we have had none until I started typing as he has had 2.

It's never as good as you want it to be, but it's never as bad as it could be.

God Bless ~ Christine

Just a quick check in, as I am cooking dinner, and "blogging", from the kitchen , via the newly installed wireless Internet. What a luxury this is!

I believe I left off on seizures counts on Thursday....:
Thursday= 1!!!!
Friday= 3 (per Matt, I didn't see any, nor did my mom. Unfortunately, this convinces Matt he is bad karma for Jake, as the one he had Thursday was when Matt came to tuck Jake in.)

I try to remember all the funny things the kids say throughout the day, but can never remember them, nor my name sometimes. However, just now Addi said something I found HILARIOUS, so I decided to run and "blog" it.

She asked for more ketchup. I said "Only if you say I love you Mommy." She responds..." I love you Ms. Hannigan." (in perfect inflection and intonation)

Then as I tell her she can grab a drink from the garage...she salutes me!

Maybe watching Annie wasn't such a great idea after all!:-)

God Bless~ Christine

Seizure count for Wed= around 15

Jake has been complaining that his ears hurt. I was thinking he may have an ear infection, as his ears are red. Therefore causing more seizures. However, I forgot he is currently on antibiotics.

He has been sleeping a hour for his morning nap, and then I have been waking him up after 2 hours for his afternoon nap. This is strange for the tornado, we call Jake.

Maybe a growing spurt?

The nuero called back and said continue with the new meds and he doesn't think his "behaviors" have anything to do with the addition of the new drug.

I so just want to take Jake's med cocktail one day and see what he may be feeling.
It is so depressing thinking that he doesn't know and can't tell me what he feels on all these drugs.


God Bless~ Christine

We have been very busy the past couple days and only going to get busier. Matt's out of town, we had Addison's Christmas program last night, ice and snow, teachers to bake for, Santa to see, and parties to cook for.

It seems like it is always "rush, rush, rush", and then nothing. Why can't it be spread out a bit? In all seriousness, though, I love it. I love baking and cooking and planning, even if it means I am up way past my 8:30 bedtime.

Since Jake's nuero. appt. Monday and adding the new drug to his "cocktail", we have had a dramatic increase in seizures.

That kind of stinks.
I have a call in with the neuro, though, and am waiting to see what his insight is on all this.

Tuesday seizures = close to 10 (or more)

He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. - Isaiah 40:29-31


God Bless~ Christine

We went to the neurologist today and now we have to wait 7 more weeks until we go again. the next appointment is on Matt's birthday...hope fully a very good SIGN!!!

The Dr. looked at Jake's face,head and chin, shook his head and mentioned "vns" (vegas nerve stimulation.) This is before I officially "reported"our seizure activity. I tried to "change his mind and convince him that many of these scars, scabs and bruises were simply that of a three year old. He then informed "the trembling" and loss of coordination is not normal.

I guess the magic med number in the neurological word is four. Once you get to 4 drugs and have tried four drugs, it is doubtful that any other drug will work. So you are then labeled as "drug resistant."

For Epilepsy that narrows your remediation choices to the ketogenic diet and vegas nerve stimulation.

We are to start our "fourth drug" this evening and after 7 weeks if it has not controlled the seizures, we need to be prepared to tell him what our "choice" is...the keto, or vns.

I will not lose hope that this fourth drug will not work yet though....Feb. 19th is Matt's birthday and 4, as in the 4th med., is our favorite number! I can't say that is our lucky number, as I have nothing to judge that on, but it is our favorite. My friends know what a number freak I am, so hopefully these are good signs.

The keto diet is a diet very high in fat and low in carbs. This is probably my first choice, after not researching either choice very much, but all my kid eats is carbs! Jake used to love chicken, meat, veggies etc...but now he won't eat unless it's carbs....or ranch dressing.

I don't know what will we do. Hopefully we won't have to make this decision. I will, however, read all the books, pamphlets and videos that were given to me today and make Matt do the same when he gets back.

I just thought of something else..."7" was my volleyball number and 19 is the number of some of my friends anniversaries, as well as being special to them in other ways (Go Broncs!). So we have "7" for seven weeks, "19" for Feb. 19th, and "4" for the fourth med!:-)
Who wants to play the lottery?!



When it is dark enough, you can see the stars.

~Charles A Beard

God Bless~ Christine

around 5 seizures today.

I got a piece of mail this weekend that was certainly an "eye opener" to me. Well, besides the millions of doctor, hospital, and er bills, that is.

We received a copy of the magazine "Neurology Now." I can't describe the feeling I got when I flipped through the mail and saw it. I am uncertain why now, after months of battling the demon, was it just now "hitting me."

I held the magazine for , what seemed like forever, just staring. I then decided it wasn't really ours and I needed to check the address and put it back in the mailbox. However, right there on the label it read :

matt peters
xxxx xxxxx
xxxx, Tx.

Wow! it was ours. I couldn't simply stuff it back in the mailbox labeled "return to sender"
thinking about this, this magazine is holding so much symbolism in our lives right now.
As much as I want to believe this isn't really happening to us, I can't simply "return to sender" this episode in our life.

When I finally got the courage, I focused on the headlines and the pictures. The front cover had a big picture of Greg Grunberg. it said "Epilepsy Heros" "son Jake raise awareness about epilesy." Wow again, a little more irony. I felt as if the magazine was "talking to me!"

I sat down and actually read all the articles. When I got to Greg's, from Heros, story I secretly wanted to hear word for word about my Jake and his son was a difficult case too, but now is completely fine. However, this is not how the article read. It was a great article though, and listed several sites in regards to epilepsy awareness.

epilepsyadvocate.com
epilepsy.com
talkaboutit.org
bandfromtv.org

All of these are wonderful sites and I hope you can take a moment and visit them to research epilepsy and educate yourself about many of the facts and myths of epilepsy.

We venture to the neurologist tomorrow. I compare this feeling to the much anticipated monthly doctor visits for a newborn. I literally count down the days.

I am unsure what to expect or what i will hear, but I am ready for anything.

Jake is certainly battered and bruised. I took him to the clinic Friday night after his bath, as his chin looked awfully red and pussy. It was confirmed that he had an infection, and it could possibly staph. S o we are now on antibiotics and creams to fight the infection.

Saturday morning we weer not shocked, unfortunately, to witness another gashing of the chin.

Saturday evening, my sister in law was sitting on the couch, teaching Jake how to play the Leapster. Right at this moment, Jake has a seizure, fell forward towards her, and then sprang backward.

backward onto what? a part to his Thomas train set. he fell precisely on the corner of it. As I lift him up, blood literally "spurts" from the back of his head. We BOTH mutter something and rush him to the kitchen for paper towels, as Addison gets big towels. The blood doesn't seem to let up, so we are certain we are going back to the clinic. Lisa begins packing Addison and getting things together.

Finally the blood stopped.

I assessed the damage, and luckily, thankfully, it was merely a little dot. Geez, for as much blood as we saw, i thought for certain he would have a big cut. nope, just a little, tiny, dot looking, blood mark.

Things are looking up!:-)


"To have faith is to be sure of the things we hope for, to be certain of the things we cannot see. It was by their faith that people of ancient times won God's approval." [HEBREWS 11:1-2 BIBLE]

God Bless~ Christine

Seizures:
Thursday- about 5
Friday- about 3
Saturday- about 8
Sunday- 2!!

We are very busy prepping for Cocktails, cookies and chaos Peter's style, so I won't write much, just an update in our comedy.

Let's see first off i missed a faculty meeting today. I was at school. I even asked "Where is everybody?" While they were all being informed of school procedures, I was upstairs...wondering.

next, I sent Jake to school in his pajamas for pajama day a week early! Luckily, according to his aide, I wasn't t the only one. I still don't know if she was trying to make me feel good or not. At least he was comfortable all day! right?

On a serious note, I am pretty sure we are going to have to try a new medicine cocktail for Jake. we journey to the neurologist next Monday and the days go can not quick enough until that 8:30 appointment. Jake had a blood test yesterday to check his lamictal level to determine if there is room to , once again, up the dose. I try to be optimistic, but even yesterday he had 10 drops. I find it hard to believe we would have enough room to increase that much.

I am not opposed to changing meds, however I get terrified of the side effects. More seizures? change of personality? lethargy? loss of motor skills? loss of speech? loss of cognitive skills?

Do we really have to start the whole process over again?
The goal is seizure free. So I guess I am willing to try anything to get him to that day!

Faithless is he that says farewell when the road darkens.
J. R. R. Tolkien

God Bless~Christine

ps- I have decided to do a seizure count each day...today's= around 6, yesterday around 10

We had a very eventful weekend to say the least.

We started the weekend Friday evening with getting Jakes stitches out (YEAH!), having family over Friday night and my niece spending the night. That sure was a lot of fun. The girls went to bed way too late,

but finally hit the sack in anticipation of the annual Christmas parade and Brett's birthday the next day!

Jake and his cousin rise around 7:30, as Addison sleeps in. After many attempts, begging Jake to go to the playroom (carpetted area), he finally abides and climbs into his recliner. I look in on him, as I am cleaning, at precisely the exact moment I see him dive into the arm of the chair. As I run to him, he looks at me with a full face, or chin, of blood. Again, I mumble something under breath, and look at his chin to see a gapping hole. I refuse to go to the er, so we take the kids to the parade and wait for the clinic, that I love, and knows Jake by name, to open at noon.

The doctor sees him, but decides he is missing a big chunk of skin and doesn't want to "sew infection in." I ask if a plastic chin implant would be a good idea, however he didn't appreciate my humor. I then ask at what point we should consult with a plastic surgeon. I don't know if he thought I was kidding again or not, but also advised that this would not be necessary. So we walk out with sterile strips glued on and a bandage that is supposed to last, per the doctor, 5-7 days and should be "just as good as stitches."

We get home feed the twerps anad put them down for a nap. When they awake, we try to get organized and cleaned up to go to the bithday party. About a hour before the she-bang is to begin, Addison barges into the bathroom as I am showering yelling "he did it again and it's bad!" I mumble something under my breath, cover up and slowly approach "the scene." As I make my way to daddy and Jake crying in the kitchen I notice markers and blood on the floor...obviously "the scene" of the accident.

I am not quite sure why , even after so many accidents, but I was not prepared for the sight. Jake had blood coming from both nostrils, a loose tooth, scraped gums, a huge fat lip, a red and swollen check, and......a gash in the chin!

"C'mon, give the kid a break!"

I call the clinic, they remember Jake and advise not to bother coming in, but rather to try and rebandage him using butterfly closures.

We do just that and hit Brett's 10th birthday! Happy Birthday Big Boy! It was a lot of fun, but Jake and I headed out early, because he was definitely acting very wobbly and not quite himself.

We are just about 48 hours from the last bloody event and holding strong! Wish us luck!

At least the kid will never have a double chin!

“There is nothing that wastes the body like worry, and one who has any faith in God should be ashamed to worry about anything whatsoever”

God Bless~ Christine

Apollo Junior High teacher Christine Peters holds a special place in her heart for those affected by Epilepsy. Her three-year-old son suffers from unexplained seizures and after many tests, hospital stays, ambulance rides, stitches and medicines, has become very knowledgeable on the subject. Christine shared her story and what she had learned with her colleagues. In support of Christine and in recognition of Epilepsy Awareness Month, the Apollo staff wore purple. Below are some of the facts Christine gave her fellow staffers.

Epilepsy Facts:

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.

In two-thirds of patients diagnosed with epilepsy, the cause is unknown.

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 is the second leading cause of disability and death in children under the age of 14 - second only to automobile accidents

Research on epilepsy has historically been underfunded. Federal dollars spent on epilepsy pale by comparison to those spent on other neurological diseases, many of which affect fewer people than epilepsy.

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

The above was posted in our district newsletter. To say the least I was BLOWN away by the support of my amazing coworkers!! They have taken up slack while I was away and continue to "accomodate" me , as we try to get to a seizure free day, or rather 30 days at that.

The kind words of the newsletter editor were also amazing.

Again, another reason why we, The Peters, are so deeply blessed.

A friend is someone who reaches for your hand and touches your heart.

God Bless~ Christine

I had planned to blog the comedy of our life that was getting ready for Thanksgiving traveling and it just keeps getting better.

In the Thanksgiving preparations, that consisted of healing head wounds of Jake's, parties at the school, wrapping up my classroom, picking up the millions of socks left in the dining room from the dog, interrupting games of kitchen hockey using tomatoes and avocados, finding babysitters for Bogey, Jasmine and slugbug, and trying to bring at least something, as to not show up empty handed at the host's house, their has been much humor.

I swear with each waking moment of our life it just gets more interesting, and all one can do is laugh.

Upon leaving, already late, we already had a fish rescue. Taking bags out to the car I hear Addison scream bloody murder, once again from her room. "jasmine, jasmine!" Jake is with me, so I am put a little at ease, however I hear the all too familiar cry "She's sucked up!" We run to find jasmine stuck to the filter of the newly cleaned fish tank. I call fishy 911 and after a little net finesse, Jasmine is saved.

We get on the road and I realize we have to turn back because I forgot the store bought food "I baked" for the host.

On the way to drop Bogey at Babi and Papas the 10 lb crate of dog food spills in the car, while Bogey had an amazing meal, it was not on Matt's priority list to clean his truck of dog food on the way to a trip we are already late for.

Finally, we are on the road, for the 5 hour road trip, late. The kids are starving and tired but we wanted to hold off lunch until after we passed fort Worth at about 11:30. At about 11:00 Addison is really complaining she is hungry and she honestly doesn't look all too good. I have seen those deep purple eyes and pale white skin before. We reassure her we will be at "Old MacDonalds" in about 10 minutes. I turn around to settle in to the scenery on the highway only to hear a waterfall coming from the backseat. I spin to see Addi spewing what ever it is she may have eaten that morning, not once but three or four times. She then proceeds to repeat "No one ever feeds me around here." After a quick clothes change in a crowded parking lot, we are once again on the road.

She eats her "Old MacDonalds" and is fine.

We arrive in San Angelo to the home of Granny and Poppy, after 5 long hours of "are we there yet? How much longer?"

We are here and have a great Thanksgiving with the wonderful family we see too little of.

We wake to a search of lost wedding rings and "Someone stole it." Please, it was right where you left it!:-)

The guys hit the golf course.

We, the kids, Granny and I, head out late for a little shopping. We pick up "Old MacDonalds" for a backyard picnic, so to defer Jake away from playing in the McDonalds play park, that is surely accident ridden.

I strap Jake's helmet on after the peaceful lunch and shout "30 more minutes until naps!" Granny and I sit on the driveway and watch the kids plant flowers, or rather dig up Granny and Poppy's pretty garden, ride bikes and run.

Jake runs from "planting" to show us something....second base slides on the driveway....and lays....

I mumble something under my breath, run to pick him up, and tell Granny I can't look, she has to.

Oh it's only a bloody lip she exclaims! (Granny now runs in to get rags) Phew! Because I didn't want to see a bloody face. The way he fell, 3 feet in front of me, and how hard he was running, I just knew it would be worse.

I turn him off my shoulder to take a glimpse. Geez, bloody lip? I wish! The kid's face is covered in blood.

I remove the chin strap, from the helmet he WAS wearing, and there is the biggest gash I have seen!

It is kind of humorous to me, because we defer from "Old MacDonalds" as to avoid accidents in their play area, have a picnic on nice soft grass, strap the helmet on, and are never more than 10 feet away from the kid, and "bloody gashes" still happen.

Soooo a couple hours, 12 stitches, and a face full of road rash later, Jake and I once again emerge from the all too frequented er.

Jake's as pleased as the piped piper, as he scored a new Thomas track and a few new trains. However I am still wondering "what else?"

If knowing answers to life's questions is absolutely necessary to you, then forget the journey. You will never make it, for this is a journey of unknowables -- of unanswered questions, enigmas, incomprehensibles, and, most of all, things unfair.-- Jeanne Guyon

God Bless~ Christine

I am so Thankful on this day of Thanksgiving.

So thankful to be so extremely blessed. We are blessed by amazing friends and family who have shown amazing, unwavering support as we have been traveling along this roller coaster. Blessed by amazing doctors who relentlessly continue to try and give us a seizure free day.

I know watching little Jake continue to have seizures is very frustrating and discouraging to many who knew the young man who never met an obstacle he couldn't conquer. What is evident and so visible to me, is that little man is still here. He has challenges now, but his challenges are harder for us to watch, than they are for him to defeat. This is why Our Lord made children so resilient. And our Jake has shown the most amazing resilience I have ever seen. For this we are blessed.

I feel there are two paths and I was given a choice of which one to follow. The one where I feel pity, sorrow, anguish and fear for the bump in the road that was given to us, OR I can accept it, learn from it, and grow from it.

I choose the second!

Jake has chosen the second.

This is a learning experience and were chosen by God to be strong enough to learn, grow and scream out about our experience. I am unsure as to why exactly we were chosen, but the fact of the matter is we were "chosen." Now it is my turn to do something with this unfortunate circumstance, because it will get better and it could be MUCH worse.

We often think of great faith as something that happens spontaneously so that we can be used for a miracle of healing.
However, the greatest Faith of all, and the most effective,is to live day by day trusting Him. It is trusting Him so much that we look at every problem as an opportunity to see his work on our life.

~Rick Joyner

Happy Thanksgiving!

God Bless~ Christine

I feel I spoke too soon. On the eve of returning back to work, Jake just had a "tc." Although this is the only seizure he has had since Friday, and although this is only a little setback, it does not make it any easier returning to long days away from my baby boy.

"When life turns upside down, remember that we have a loving Creator who will give us strength if we will give Him the eyes of our soul with faith in His restoring power."

God Bless~ Christine

We had a seizure free day yesterday!! Our first since August 1st!!

Without faith, nothing is possible. With it, nothing is impossible.

~Mary Mcleod Bethune

We have our first black eye!

As we are sitting at dinner last night Jake had a seizure which resulted in a cut and a black eye.

As awful as it might seem, all Matt and I could do was look at each other and laugh, while repeating, again..."Are you kidding me?!"

You see, and some of you may remember, the gash on his check that has now left a nice "v shaped" scar. He got that gash, sitting on the floor, while wearing his helmet. In an effort to prevent injuries, a while back we started having picnics on towels in the family room, as to avoid falls from the table. one afternoon, for snack, we gave Jake a small plastic bowl full of grapes and sat him on the "picnic table", donned with the helmet. he had a seizure, his face fell forward, the helmet broke the bowl, his check followed the path of the helmet, hit the exact point of the where the bowl had split, resulting in the "v shaped gash."

We thought we had taken every precaution to prevent injuries, but apparently not.

The black eye and eye gash is a similar experience.

We graduated Jake to a booster seat strapped to a chair, so we can again eat dinner as a family. I made sure to strap Jake in,move his chair away from the table, in the case he did have a seizure, his head would not hit the table. Jake did have a head drop seizure last night. usually he snaps right back with us, and in a matter of 2 seconds he is on his way. Last night he continued to cry. We could not figure out what he was crying for. Taking a closer look, I observed a bloody circle just under his eye. The circle was approximately the size of a straw opening.

yes, you got it! His face fell right onto his straw, in his cup, on his tray.

Resulting in.....a gash and a black eye.

We are VERY thankful this is the worst we have to report and continue to appreciate all the prayers of support and thoughts.

Meanwhile, the comedy, that is The Peters' house, continues.

God Bless~ Christine

Since the malicious murder of Spot Alvarez Peters, more fish have come and gone in the Peters household.

We were convinced to buy 3 tiny tetra fish by the pet store employee, who probably wasn't a day over 16. He assured me, Jasmine, Ariel and Prince Eric, are very hearty and would be hard to kill. I believe Prince Eric lasted 4 hours, Ariel and Jasmine, however made it through to the next morning. It was late morning when we checked on the last remaining prince and princess, only to find them sucked into the aquariums filter. It was not a pretty sight.

This time I made Matt and Addison make the trek to the pet store to pick out yet another fish. They came back with another beta, Jasmine II, and a hermit crab, SlugBug, who we have yet to see, as he has hidden in his pyramid, or under the dirt the duration of his stay at the Peter's household. Word must have hit the pet store about the Peters murders and Slugbug was not going to show his face in fear of meeting his fate.

Jake went up in his meds Friday. This leaves only one more week of the long wean before we need to check blood levels and evaluate seizure activity.

I have been told since day one, that we wean so slowly onto his Lamictal because in combination with his Depokote a "deadly rash" can occur. So since day one we have been on the lookout for this deadly rash, that basically burns the skin off of the patient.

Well Saturday afternoon, a day after the "upping" of the meds....I notice a rash. I am thinking "are you kidding me?" The "deadly rash" starts on the tummy,check, is mottled or lacey, check, and can look like a burn or have a burning sensation, check...I didn't notice the rash until jake complained that his belly burned.

I immediately call the nuero on call who informs me to stop his Lamictal...again I am thinking "Are you kidding?" We have come so far and I know that you also have to "wean off" of the drug. I fear a reaction from not weaning off and even more so, fear a seizureful night!

I decide to take him to an after hours clinic. They get in touch with the nuero and they both decide this is not the "deadly rash" and my son will indeed make it through the night, as opposed to having all his skin burn off.

Phew, because we were not looking forward to picking up the layers of skin that may be left from this "deadly rash."

We are unsure what caused the rash. It was obviously an allergic reaction to something,as his eczema was extremely inflamed as well.

All is well now. We are just anxiously awaiting the day when we can count less than 5 seizures a day. We are over 6 weeks stitches free though! (knock on wood)

It is Epilepsy awareness month. Research the 36 different types and the related syndromes. It truly is not what you think. Wear Purple!

God Bless~ Christine

It's a sad day in the Peters' household.

Over the last couple days we gained two new additions to the family.

The first a green, turtle sandbox to help keep Jake busy during, what appear to be getting longer days. There are only so many activities we can find to do all day long. However, the sandbox has beena wonderful addition to our daily schedule. I have to high five you stay at home moms!:-)

The second, a bright blue, with red feathery fins, beta fish. Addison picked her "Spot Alvarez Peters" out, carried him home, fed him, and even made sure he had a nightlight. She ran to see him every day after school and checked on him several times throughout the evening. She had earned her first pet and couldn't be prouder.

It was about 4:30pm when I heard a terrible, gut wrenching scream. As I run to see the cause of the commotion. Addison comes runing from her room, unable to talk or even mutter a sound over her heavy bawling. She is slowly followed by her brother, holding a blue fish net, and bearing an evil grin.

Her , oh so loving brother, found the fish net, scooped Spot out of the pristine fish tank, neatly set on Addison's window sil, and threw him down the drain, all while the little princess watched her beloved pet meet his fate down the long and winding drian pipe.

After much anguish in trying to rescue the poor beta, we surrendered our efforts. Spot could now be swimming under the endless streets of Plano, Texas, as Nemo once did, searching for his long lost family.

It is with a sad heart that I tell you, Spot Alvarez Peters lost his battle to the little brother Jake Peters at approximately 4:45 central time.

Rest in peace Spot.

God Bless~ Christine

I sit here tonight in much strife, uncertainty and confusion.

I really can't believe I log on ever so often to blog about my boy. I read blogs that people attach to emails to me. I don't blog about my own life.

I can't believe, looking back at the past 3 months where our life has taken us. I reread the blog that I have written and can't believe it. What the heck happened? What did I do wrong? Why can we not live a normal life right now?

I remember about 6 weeks into this I looked at Matt and said "I am soo glad I didn't drink or even take a sip of alcohol when I was pregnant, because I would be feeling so guilty right now." I know I said that. and, no I didn't take even the littlest sip of anything,but I still feel like I did this to my son.

Was it all the milk I drank? He did end up not being able to take breast milk or formula, he had to drink lactose free, as a baby. He has eczema...did I give that to him? I started with bad outbreaks, just like Jake, in 2000. Was it the darn vaccines that I questioned a trillions times to my doctors?

I seriously don't know how we got here and , again, looking back, I can't believe we are where we are.

We had just gotten to the "good part." Both kids potty trained, sleeping through the night, they play together, get up and watch Saturday morning cartoons together, eat dinner together...yada, yada , yada...you parents out there know what I am talking about. It was seriously getting easy again! W e could honestly appreciate the twerps without stressing about what they needed next!

Then BOOM August 1st happens.

Looking at the last 3 months I can't believe we seriously restrict the kids to the playroom or family room, we walk him to the restroom and hold him to pee, we have to explain ourselves because he can't hold his drink at a restaurant, or his head hit the table and he starts to cry, that I am not working, and Jake is not at school. When we were at Children's Hospital I remember saying to matt nonchalantly, and not even thinking I needed it, "Maybe I should hold off going to work for a couple weeks." Here I am almost at the end of the 2nd 6 weeks and still not at school!

I have a rowdy, rambunctious 3year old who knows nothing of this rather than "no pokes" from getting iv's, stitches, more iv's and more stitches. At one time, or rather several times I wished God would give it to me and take it from him. But if I had this damn disease, syndrome, whatever, I would not be able to care for my kids the way I should. Jake doesn't truly get what he has. he knows mommy gets angry at him for not staying on the carpet, or sitting down, or he has to sit in a highchair again. he gets pissed when he has a seizure, he knows when he needs his meds, but to him , this is his life.

This is MUCH harder on Matt, Addison and me than it is on him.

Frankly it just sucks. It sucks mostly because we still don't know anything! The doctors and nurses that I love still don't now anything. We can treat him with all these drugs, that are not supposed to change his disposition or personality, but do, but we still know nothing about this darn disease!

here we are November, epilepsy awareness month and has anyone heard anything about an Epilepsy event in your hometown?! I bet not. I am in Dallas and search and try to find something and I can't!

Not just because of Jake, or our family, but because of millions of others out there battling this demon, please go out and hug a friend with "E" and try to find out what we can do to try and "fix" this disaster that no one appears to know anything about.

God Bless~Christine

I apologize, for Babi:-), for "cussing" in this blog and in another blog...emotions get the best o fme sometimes.

Well we had another tc yesterday.

I took the kids on a walk to my sister in laws house, about a mile away, to show off their 2nd Halloween costumes. We all chatted outside for awhile, the kids ran, and apparently had ripped into the candy already. I joked with my niece "hey quit giving seizure boy all that sugar that's the last thing he needs." We make plans to walk back home, get our pumpkins and return for dinner and a pumpkin carving party. We walk to the end of the block and Addison shouts over the tunes playing on my IPod "Mom, look at Jake!" I say "yes, Addi, I know," as she always informs of any strange look that Jake may give in an effort to warn me of a seizure. Thankfully, I did take a closer look.

Jake was having a full seizure and was unresponsive. I quickly snatch him out of the double jogger and put him in the grass, I start taking off shoes, and clothes. I actually don't know why I am stripping the kid and why I moved him to the grass. At this moment a caring teenager on a bike was stopping and trying to help. He kept insisting to let him do something. What? I am unsure. I moved him along, as if to say "move along folks, nothing to see here." I am still very impressed with this young man. To see a stranger on the street and her son in full convulsions and offer to help was very admirable to me.

Apparently somewhere during all this I called my sister in law, and about the time the seizure was dissipating, The Alvarez van pulls up and kids and my sister in law start pouring out. She's handing me diastat, that luckily we don't need , as the seizure stopped somewhere in between the 2-3 minute mark. I don't know if I have ever been so thankful to get a ride home.

Tomorrow's Halloween and it could bring the scariest one yet.

I am so scared as to what the excitement of the day and evening may bring to a boy who suffers from seizures. The day will be filled with much over excitement causing:
exhaustion= trigger
too much sugar= trigger
flashing lights or strobe lights= trigger

and all at the same time!

I am praying that we will have a very UN eventful seizure day and the kids can enjoy it the way all kids should, sans stress, anxiety, and seizures.

We start the day bright and early with a Halloween party at their school. They will be wearing costumes number 2 to the school; Princess Jasmine and Peter Pan. Then will head out early for trick-or-treating, as a cheerleader and football player, in an attempt to avoid at least some of the over stimulation, and crowds on the streets of Plano.

Wish us luck as we try to conquer a very frightful Halloween, that is, trying to stay seizure free.

God Bless~ Christine

Addison and I got a "girls night out!"

We went to my best friends daughter's birthday party and had the best time! I didn't take Jake, as I didn't want to follow him around all night like a new walker. I wanted to sit with friends and family, sans anxiety, and enjoy my daughter.

About a hour into the party I hear Addison start to cry, or scream, rather and emerge from the huge Sponge Bob jump house with her mouth covered in blood. Isn't this why I didn't bring Jake?! She bonked heads with another partier and got a big ole' gash in her lip. As scary and tense as it was, she is fine and was herself in a matter of minutes. Just my luck, though, I leave the "walking accident to happen" at home and the other angel gets hurt. Blood and all, though, I wouldn't have traded that time with Addi in a million years...we really needed that get away.

I wake up Sunday to Jake having a fever,which means seizures, which apparently concludes to bloody and loose teeth. Just when I thought this was really,truly getting better, he has a seizure and knocks a tooth loose.

"A tooth" is what I thought, until we went to the dentist today...no not one but three teeth are on the verge on falling out! Good news is besides the "mobility" of the teeth, they are real healthy and if they fall out now, early, it should cause no problems.

I was getting used to this 1-2 seizure a day thing and now that we are back to 4-5, I can't believe how that brings back the anxiety. The sound of the seizure, literally stops my heart. It sounds like a big gasp or fake hiccup, and is followed by a limp child falling, hopefully on nothing hard. He had one today as the nurse was examining him at the dentist and I thought she was about to start crying, because he had the gasp, a tremor and then shot up and was very disoriented. I have to say, that was a strange one and kind of threw me for a loop.

I wonder what I was like 3 weeks ago when we were at 10-20 seizures a day?!

The kids are starting to enjoy the Halloween week though. Yesterday we hit the "trunk or treat " at their school and had a great time....maybe that's , sugar, heat and exhaustion, what's causing more seizures?











God Bless~ Christine

Last night Addison had soccer practice at 6:00 and then the school had their annual hot dog dinner starting at 6:30. At the dinner they kiddos eat hot dogs with their friends and families and then each class does a short little recital. Usually consisting of fun little songs and dances.

Since Addi missed soccer last week when we were out of town, I just made up my mind she would miss the hot dog dinner this year. However, she shed many tears over missing the event. I decided she would go to half of soccer and she could talk to her coach about leaving early.

This is what we did. We arrive at the dinner in enough time to scarf down a dog and a cupcake and settle in for the recital.

I don't know if subconsciously I knew how hard it was going to be, or if it even crossed my mind, but waiting for Addison to perform, was extremely hard.

The youngest classes perform first and then they work up to the older kids.

In years past we watch Jake perform and then wait for Addison to perform.

It was gut wrenching, sitting in the pew, watching Jake's precious classmates perform songs that he should be singing with them.

I guess I didn't realize it would have that big of an effect on me, but it was truly one of the hardest events for me to witness in a long time.

Jake has been "with" his class for the past 3 years. Some kids have come and gone, but the bulk of them have stuck together. I couldn't believe I was watching them do their thing without our Jaker-Doodle.

This is the class, that when I drop Addison off in the mornings and pick her up in the afternoons, run to smuggle him in hugs and kisses, show them what they are doing in class, and scream in delight when they see his face.

These kids, at three, know a part of their family is missing.

We are so blessed to have found this school. The teachers show amazing support for our kids, teach them wonderful things, how to walk in Jesus's footsteps and most of all love them with all their hearts. This is truly evident everyday in the looks of concern and compassion on their faces when I take my angels into this place. It is going to be one of the hardest things at the end of this year as Addison"graduates" to a public kindergarten.

I wish I could be a fly on the wall in their classrooms one day and see how these amazing role models are teaching our kids such amazing things, that are not only academics, but also, God's love, compassion, empathy and support of one another.

We are blessed to have found them and pray for the day Jake can rejoin his other family.

God Bless~ Christine